tag:blogger.com,1999:blog-82658616133126829092024-03-19T02:30:26.181-07:00Loving Naomi KathleenAnne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.comBlogger90125tag:blogger.com,1999:blog-8265861613312682909.post-29263379089738909762015-07-22T17:24:00.001-07:002015-07-22T17:24:23.527-07:00Charlie! and Other Wonderful and Not-So-Wonderful ThingsHm. Looks like we are going to accomplish four whole posts in a 12 month period. Not good. I think about writing here nearly every day. The time escapes me and by the time evening rolls around I am so tired my body aches and my brain is fried. Things have gotten even busier and more hectic since the last blog installment. Obviously March has come and gone and we now have Naomi's baby brother. Charlie! Or Charles Robert Caughey. Wonderful. His arrival was...not smooth. He was born a month early, during a big ice storm, while Rob was supposed to be on call (Thank you Dr. Howells for covering call for Rob AGAIN. Wonderful), as a result of Fun Times With Preeclampsia, the Sequel. Not so wonderful. I had it with Naomi too. He got to spend several days in the toaster oven, came home for two days, then spent three more days in the hospital with a nasty case of jaundice. Not so wonderful. Sigh. It never is easy. Naomi has adjusted really well to having Charlie in her life. Wonderful. Much better than with Lydia, which was kind the typical slow moving disaster common around here. Lots of screaming that first year with Lydia. By Naomi. Pretty much no screaming with Charlie. Wonderful! Lydia has had a tougher time, this being her first experience with a new sibling. Lots of jealousy. Just as she was getting better with that, Naomi started on summer vacation, so Lydia then had to adjust to Naomi being home all day too, as well as Charlie being here. Not. So. Wonderful. We had a hitting stage, a biting stage, a kicking stage and a screaming stage. Directed at all of her adult caregivers and not Charlie and Naomi, thankfully. She did potty train quickly and easily a few months ago. Very Wonderful to have one of the three out of diapers. This whole three kids thing was going pretty well as long as Naomi was in school. It's really oh-my-what-was-I-thinking hard with her not in school. Irrationally, I still want another baby. Probably not going to happen to due opposition from Rob, me turning 40 in May (Not So Wonderful) and my lousy obstetric history. As my niece Grace used to say, that is all "stupid and nasty." Keep in mind I have A LOT of help. Wonderful. I have a weekly housekeeper, my Aunt Mary and cousin Gail were helping me every morning from the time Charlie was two weeks old until Mary fell on my (stupid and nasty) steps and severely broke her wrist, requiring surgery (Not so wonderful), our long time nanny Jenn, or Friend Jenn as Lydia calls her, and my cousin Hannah, home from college on summer break. Friend Jenn and Hannah graciously took over for Mary and Gail after the accident. Wonderful. I think what is so hard is that I have three children, all of whom need affection, attention, socializing and playing with, and none of whom can really play, socialize or give attention with/to the others. I keep thinking, if Naomi were a typical 6.5 year old child this would be so freaking easy. I can care of any two of them at a time with ease and can do all three for a few hours occasionally, but cannot do all three for any length of time or with any frequency and have all four of us be at all happy and content. Lydia has, with direction, begun playing with both Naomi and Charlie some. Naomi actually likes it. Lydia loves roughhousing so I've taught her to play some of the roughhouse type games I play with Naomi too. I also help Charlie play with Naomi. Naomi actually really likes this and laughs and smiles. Sometimes Lydia will try to snuggle with Naomi while she watches her shows. These attempts are met with mixed feelings from Naomi but I see potential there. Wonderful.<br />
One of Naomi's favorite summer activities is swimming. There has not been much good swimming weather this summer. Very rainy and very overcast and not all that warm. Not so wonderful. Hannah and I (mostly Hannah) have had the girls in the pool on many days when swimming was not particularly appealing to either of us. The children still enjoy it. Summer school started for Naomi in July for the entire month so that has been fun for her. She goes three days a week for a short day. Apparently in big cities they have magical school programs for children like Naomi that run year round. I can't tell you how much Naomi and we would like this. We did briefly consider relocating to Pittsburgh to take advantage of these magical programs but quickly decided to stay here, as Rob is very invested in his practice. It was tempting, though. There just isn't enough demand for those types of services here. The population is much smaller and so it is not really economically feasible. Not so wonderful. Naomi is still riding Dakota, still watching her shows and reading her books. She has been interested in more new books recently, which is very thrilling, and has been doing things she hasn't done in a while, like rolling on to her belly and trying to push her knees under her (she doesn't get very far as she is not very strong and now her legs are long and heavy) and playing with toys with her hands. All wonderful. Today during her stretch out time on the floor she rolled to her side and picked up the linking letters and played with them for a long time. If Naomi could learn to play by herself like that in any kind of significant way it would make things a lot easier for us and a lot nicer for her. As it is, she needs to be entertained/assisted all day long. Its hard for all of us. <br />
I am sure a lot more interesting, or maybe marginally interesting, things have happened since I posted last but my brain is like mush most of the time so I probably can't remember them. Rob asks me what my plans are every day as he leaves for work and every day I answer "Surviving." It's true. <br />
Now for the best part of any post, the pictures. There are a lot of pictures, especially of Charlie. I hope you enjoy many versions of the same picture wherein the pictured children are demonstrating slightly different facial expressions or slightly different positioning of their limbs. I'm not sure these are all in the right order, chronologically, as some are from the camera and some from my phone. <br />
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<tr><td class="tr-caption" style="text-align: center;">Just born. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Needed oxygen right away.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First time I got to hold him. He was allowed out of his toaster oven for just a few minutes. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Wearing his CPAP. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Finally visiting my room!</td></tr>
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These next two were from the two days he was at home before being readmitted. <br />
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Oops, back to the OR and just born.<br />
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Holding Charlie in the baby nursery after he was done with the CPAP and allowed to be out of his toaster oven a lot.<br />
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<tr><td class="tr-caption" style="text-align: center;">Daddy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ugh oh. The jaundice was starting. </td></tr>
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Getting dressed to come home. <br />
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His first home bath. <br />
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These were taken the afternoon before he was readmitted. Notice how yellow the whites of his eyes are. Don't know why we didn't see that. </div>
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I got to hold him for twenty minutes every three hours for the duration of his readmittance. I did not like that. I did like him being treated aggressively by his pediatricians and saved from brain damage, however. <br />
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Back home. So cute. So sweet.</div>
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Hm. These are from the night before he went back to the hospital. Yeah, he's really yellow.<br />
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Now this was when he was back home again.<br />
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Naomi got fancy new sneaks like the cool kids wear. <br />
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Lydia wearing her "bushka."<br />
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More Baby Charlie, or as we call him now Charlie Barlie Man, or just Barlie Man if you are Lydia.<br />
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My cute girls.<br />
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More Baby Charlie, still in his size Newborn clothes. <br />
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<tr><td class="tr-caption" style="text-align: center;">He looks like E.T. here. </td></tr>
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Lydia enjoyed the "choc-we-it" at Easter. Maybe a little too much. .<br />
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This is the first year Naomi wore a store bought dress for Easter. Too many children...<br />
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Charlie in his nerd suit, or his UVa suit, as I called it. Dad is an alumnus. <br />
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Naomi wore this dress too. Very Alice in Wonderland. It is fun seeing the things I made for Naomi on a little girl up and walking, I mean running, around. <br />
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Pretty sure this is an out of order newborn shot. <br />
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Yellow is still Naomi's favorite color. She hates the camera flash and always clothes her eyes. Also, sometimes she's just ornery when I try to take her picture. I know this because she laughs hysterically when I point out that she is not cooperating.<br />
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These next three are so Lydia. </div>
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My big girl and my little boy. <br />
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I love him.<br />
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Then I got bold and tried for some group shots. <br />
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Snuggling. The best.<br />
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Examples of Naomi's purposeful non-cooperation. <br />
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<tr><td class="tr-caption" style="text-align: center;">This is her laughing hysterically when I tell her I know she's being contrary. </td></tr>
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My favorite of his newborn outfits. I just went back to the store to try to buy it in a bigger size. No luck. <br />
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Naomi being silly. <br />
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Ready for school, waiting for her van. Naomi loves her van. The princess has a private van because she gets upset (screams) if she has to share with another child, or worse yet, wait for another child. Ridiculous. I am glad they school/van company let her get the best possible start to her day.<br />
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It never ceases to amaze me when my younger children meet developmental milestones.<br />
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Lydia loves, I mean loves, to roughhouse. She is relentless. The first thing she says to Rob when he gets home from work is "Daddy. Roughhouse."<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI0BWFC3NIj9GdKyEwe_cMW8hblXhEe2ln1x2KNxI7bpa-EfVUuFxO3vACBcAjnT2NWH5R9G7T01E7uNdJqNm-UWVzZuC08sJQx8LHNS99OJk2ux9FrTpq1vAMZYphnURgI6x8efuJQKIg/s1600/196.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI0BWFC3NIj9GdKyEwe_cMW8hblXhEe2ln1x2KNxI7bpa-EfVUuFxO3vACBcAjnT2NWH5R9G7T01E7uNdJqNm-UWVzZuC08sJQx8LHNS99OJk2ux9FrTpq1vAMZYphnURgI6x8efuJQKIg/s320/196.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Stand on Daddy's head."</td></tr>
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These next several are definitely from my phone. Very out of order.<br />
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<tr><td class="tr-caption" style="text-align: center;">Entertaining Lydia and Naomi and Charlie's joint appointments with the pediatrician. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Charlie and Lydia came with me to get new glasses and contacts. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghTB4njsxGWtGmwpVoX2bUfVD1-jnSDUaZtoW45OjyChyphenhyphenD4nbULTTgGneIvAsa1zGie18HbOcum2QfS0hGnrrCXCoWISUWRHKdD1TRiE_1o4Hl5UTxKHtB9hwHr8f0vXvCWINHf2Stq6JE/s1600/086.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghTB4njsxGWtGmwpVoX2bUfVD1-jnSDUaZtoW45OjyChyphenhyphenD4nbULTTgGneIvAsa1zGie18HbOcum2QfS0hGnrrCXCoWISUWRHKdD1TRiE_1o4Hl5UTxKHtB9hwHr8f0vXvCWINHf2Stq6JE/s320/086.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia loves seeing herself on camera. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLWbQ7Eme1Tg7vuTMhYhbl3yYtlgZWXHxEk0kqo_0sjn0lfNLBdIb6FToMJJqqDhAmGwiciip2gSFVU-FcDu69bDaaIDqgE7XnvJViCCay-5DKAF_-hQC56Eu6fDU4EBedtAI6PU7MKuyu/s1600/088.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLWbQ7Eme1Tg7vuTMhYhbl3yYtlgZWXHxEk0kqo_0sjn0lfNLBdIb6FToMJJqqDhAmGwiciip2gSFVU-FcDu69bDaaIDqgE7XnvJViCCay-5DKAF_-hQC56Eu6fDU4EBedtAI6PU7MKuyu/s320/088.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlie's boy bonnet. He already outgrew it! He needs a new one. ASAP.</td></tr>
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We took Lydia and Charlie to a playground while Naomi was off visiting her grandparents in Pittsburgh for one of her vacations. </div>
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<tr><td class="tr-caption" style="text-align: center;">We also went out to breakfast Sunday morning, something that is very hard to do with Naomi. She hates dining establishments. Boring, as she does not eat b y mouth, and loud, which she does not like. This can result in Naomi choosing to be louder than all of the other patrons in the restaurant combined. </td></tr>
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Our first swim of the season. <br />
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Naomi on her belly!<br />
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Lydia modeling various hats. And a bowl. <br />
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Lydia snuggled up with Naomi for shows so I was inspired to try to get a good picture of all three of them. The results are as follows:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8ah5tlr0QxcJQtPbNrqj48c5_PtLtjCZQqIHaI8HZmCUotCJ_hdEcqVYy_q0XbjPa_qekiv42NBw6vclYJknGQNmBGz2YR0vgXV6THf8x6L2aqNVlcgMVR6s-XRfdHgd2BbF1cxSTT4UG/s1600/057.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8ah5tlr0QxcJQtPbNrqj48c5_PtLtjCZQqIHaI8HZmCUotCJ_hdEcqVYy_q0XbjPa_qekiv42NBw6vclYJknGQNmBGz2YR0vgXV6THf8x6L2aqNVlcgMVR6s-XRfdHgd2BbF1cxSTT4UG/s320/057.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Many stop hands. Lydia is eating a stolen pop tart. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">We're done here. </td></tr>
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My lovely Naomi.<br />
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<tr><td class="tr-caption" style="text-align: center;">Lydia told me not to take her picture. Okay. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Trying to get Charlie to nap in his own bed. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo5chm6JrG3I6OosoyfElU5cHV1ldcUCRV-jwLI_xL_Vn31H1lO0Fvd9R30amR88VfPBg_m58mKQhK_FHTmAWQLfiyJhd7T10Hmu7CvJg0Hu8x2-pA4x4Rj62odgMebQA3Jrc_I6lpQBn5/s1600/IMG_2576.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo5chm6JrG3I6OosoyfElU5cHV1ldcUCRV-jwLI_xL_Vn31H1lO0Fvd9R30amR88VfPBg_m58mKQhK_FHTmAWQLfiyJhd7T10Hmu7CvJg0Hu8x2-pA4x4Rj62odgMebQA3Jrc_I6lpQBn5/s320/IMG_2576.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Reading. </td></tr>
</tbody></table>
Lydia does gymnastics. It's funny. <br />
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gtfr5<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgejr9HRokLk2WKlyFxQGmPOhyQwMOL7c7kPSw0I344Zhk31thNaoffTDu1F2-vseIQNCJjpHJxdEUM_797DAUgW6ZSDlgai45G1VJwIy8pw7qKHTY-Jak1He8i0sFYf9fXShfaGYzRLDkh/s1600/IMG_2619.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgejr9HRokLk2WKlyFxQGmPOhyQwMOL7c7kPSw0I344Zhk31thNaoffTDu1F2-vseIQNCJjpHJxdEUM_797DAUgW6ZSDlgai45G1VJwIy8pw7qKHTY-Jak1He8i0sFYf9fXShfaGYzRLDkh/s320/IMG_2619.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Roughhousing. </td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: center;">Naomi splashing in the pool. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia imitating Naomi's pool style. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Not napping. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The ducks needed a bath. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi still loves her swing. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">So happy. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4pJQxfmt5FO4S656GKFnMCTRApKtEehw8Lhr3pP_67kz-Plppe7y2iB_AEkiypyEuucHFDimiSvDPKOewRQxAogONSltB1st8pv319AkYie8_JS13uUps9Q2I6QQnqd4eXTo4KXAai_VF/s1600/IMG_2710.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4pJQxfmt5FO4S656GKFnMCTRApKtEehw8Lhr3pP_67kz-Plppe7y2iB_AEkiypyEuucHFDimiSvDPKOewRQxAogONSltB1st8pv319AkYie8_JS13uUps9Q2I6QQnqd4eXTo4KXAai_VF/s320/IMG_2710.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the playground at the park. Hannah and I took all three. It went well. We followed this with a swim. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBB8VAT4qPDHLy0IozBqbFBxqcGL6p16NyvfQkvek7tqR3cqIFKdF5Sj8ZS_ZKnqj6rNxb7VnACNnhI4TJ-3YoaVNq6B2Vp9zBLH1ej5bJD22PrKfacMQt_PYpZlo5WY0MQ9LVKTRiXPdC/s1600/IMG_2717.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBB8VAT4qPDHLy0IozBqbFBxqcGL6p16NyvfQkvek7tqR3cqIFKdF5Sj8ZS_ZKnqj6rNxb7VnACNnhI4TJ-3YoaVNq6B2Vp9zBLH1ej5bJD22PrKfacMQt_PYpZlo5WY0MQ9LVKTRiXPdC/s320/IMG_2717.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and her new look-a-like American girl doll Daddy brought her back from his trip to Chicago. Lydia requested a <br />
"Barlie Man" doll, so that is what she got. <br />
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Well, That's it for now. </td></tr>
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com1tag:blogger.com,1999:blog-8265861613312682909.post-36311103943487786062015-02-22T16:56:00.002-08:002015-02-22T18:42:45.732-08:00Love is a song that never endsWow. It's been over five months since we updated Naomi's blog! We do post more regular updates on Naomi's facebook page. Her facebook page name is Naomikathleen.blogspot.com. <br />
<br />
I started writing this post probably two months ago and never finished it. Things have been very hectic around here. We have had a lot of projects going...we took a big week long trip to Disney in November! Naomi absolutely LOVED it and was pretty much a perfect angel the entire trip. Lydia loved it too, and was up at 4am at one point saying "Daddy. Stroller. Walking. Little Mermaid." We realized that our current home does not meet Naomi's needs over the long term, and will be completely unsuitable within the next 18 months. So, we bought land and are working on building a house specifically tailored to her needs. We should move in the next year to 15 months. Lydia turned two in November and has become even more of a human tornado than she ever was. When she wakes up in the morning it is like she has been shot out of a cannon. And she doesn't stop until she goes to bed. Also, most days she does not nap. Lastly, we are awaiting the arrival of Naomi's baby brother in March. So between big trip, wild two year old sister, house project and new brother coming, we've been busy! Neither of us have much energy left for anything except the children.<br />
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On another note, Naomi has been absolutely delightful the past few months. Happy, sweet, rarely if ever screaming. So pleasant. Like our old Naomi that we missed so much over those many many many months of endless screaming. We realize it probably won't last forever, be we are oh so consciously enjoying every single moment of it now.<br />
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After that intro, here's the post I started working on in December. <br />
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<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
Love is a song that never ends<br />
Life may be swift and fleeting<br />
Hope may die yet love's beautiful music<br />
Comes each day like the dawn</div>
<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
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<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
Love is a song that never ends<br />
One simple theme repeating<br />
Like the voice of a heavenly choir<br />
Love's sweet music flows on</div>
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Lydia is really really really in to the movie Bambi these days. The lyrics above are to the opening and ending song of Bambi. They make me think so much of Naomi, and what life with her is like. In a lot of different ways. Naomi turned six years old at the end of October. It is hard to believe that she has been with us for six years. It is hard to believe how hard the past six years have been, for her, for us. It is hard to believe we remain married after these past incredibly hard six years. Naomi and her illness, and illnesses, and ups and downs, and behavior problems, particularly the refusal to eat and her at times unending screaming, have tested our vows more than I ever imagined they would be tested when we recited them to each other on that beautiful late spring day in Pittsburgh 12 years ago. To me, the fact that we are is both a testament to our commitment to the promises we make, and also to our stubbornness. There have been many, many many many, times that it would have been so much easier to permanently part ways that it was to continue on together. It would still be easier, really. Not that there is not love. There has been just so very much water under the bridge. So very very much. I don't know what it is like inside other marriages, but I do know that marriages that involve a profoundly disabled child fall apart at a much higher rate than marriages involving only healthy children. I follow many blogs and social media pages chronicling families with children like Naomi. And we are not unique. Many fathers, and a fair amount of mothers, choose to just walk away. Maybe something about this life has made us fairly cynical, but we often scoff and roll our eyes to each other when couples make what seem to us to be gratuitously self congratulatory posts about the strength and awesomeness of their love on social media sites. Not the "Happy Anniversary to my lovely wife! The past ten years together have been wonderful and I am more thankful every day that I met you" type, More the "Our love so special and so magical! Everything always comes up roses for us! We're the most greatest couple that ever was! Every day is like Christmas and every night is like the Fourth of July!" You know what I'm talking about. It comes across to us as, well, bragging. And yes, I get social media is about two things primarily. Okay three. 1. Bragging. 2. Complaining 3. Promotion. Heck we promote this blog on our facebook pages! It's not that we are not happy for other people's happiness and good fortune. We are. But if I am honest, and I try to be painfully and transparently honest on this blog about what life with Naomi is really like, I guess there is a bitterness there, and dose of jealously as well, that sometimes makes other people's apparent good fortune a tough pill to swallow. And I think these feelings of bitterness and jealousy have been magnified by some of the callously cruel treatment we have received from people who we thought loved us and supported us, but instead viciously turned on us because, um, we had the audacity to have a disabled child and that inconvenienced them and made them uncomfortable. And also, if Naomi had been healthy, well, that could be us, and that is how we thought things would be for us. We got along so easily and effortlessly prior to Naomi's devastating illness. And all of the other stresses in our lives seem like they would be so much more manageable if Naomi were a typical Kindergartner getting on the bus with all of the other kids every morning. I think it also comes across as a little naive and, well, lacking in self awareness. Part of what is so great about living in contemporary America is that bad stuff really truly usually does happen to other people and I wonder how many of my fellow Americans really get that. Okay, how many of my fellow middle class and above Americans really get that. No, it's not a contest of whose life is the best and whose life is the worst. Ours is certainly neither. In fact, there are many situations that I know of personally that I think are so much harder than ours with Naomi, and many situations that I don't know personally that are so much worse even than those. As I have often said, Naomi will never be a child soldier, or trafficked in the child sex trade or any of those just absolutely utterly awful awful things that happen to children. She is loved and coddled and pampered and spoiled in every possible way, and will continue to be forever and ever until the end of her days. So what is my point. I guess I would ask for a little humility from those who are riding a big wave of good fortune, and an awareness that but for the grace of God, and random genetic malfunction, you could be where we are and we where you are.<br />
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We have also learned a number of things since Lydia came in to our lives. We used to wonder which was harder, to have a child like Naomi who never developed much at all, or to have a child develop normally for a while and then sicken and pass away, or be taken in a tragedy. We now know the answer. It would be much harder to lose Lydia after two years of typical, wonderful, fascinating, amazing, mesmerizing development that it has been to have Naomi never develop at all. With Naomi, we have a finite loss. We have a loss of our expectations for how things would be. Losing Lydia would be an infinite loss. For all of those families who have lost a one time healthy child, my heart is torn out for you. You have suffered much more greatly than we have. And, yes, I believe suffering can be quantified. <br />
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Here's the other thing that Lydia has brought in to our lives, besides herself of course. Naomi no longer has to be anything except Naomi. Maybe that sounds odd, or wrong or sad or something. Of the many hard things about Naomi's profound level of disability, one of the most poignantly painful has been the grief over all of the things she and we have been missing. All of the typical things parents look forward to enjoying with their children...the big milestones...walking, talking, Hearing your child say your name, or say, as Lydia does, "I wuv you soooooo much." while wrapping her arms around you. Seeing them get excited about new things, enjoy holidays, interact with the children of your siblings and your friends. Enjoy eating food. Hearing them say funny things. The whole time I was pregnant with Naomi I kept saying "I can't wait to hear what she has to say." I'm still waiting. We can communicate with her flashcards, but it certainly isn't the same. We tried so very hard to fit Naomi's way of being in the world in to our way of wanting to enjoy her in this world. Truly it was not fair, for her or for us. Every holiday and party she hated. And we were despondent and disappointed. Now, Naomi doesn't have to like holidays. Lydia likes holidays. So Naomi is free to do what makes her happy, which is be in another room away from the noise and hubbub and change in routine that she so despises. Also, all of the things Naomi cannot do no longer hurt so acutely. Lydia fills that void, so Naomi is, again, free to just be Naomi. Somehow, with Lydia in our lives it is so much easier to just enjoy Naomi for who she is, free of any expectations to be anything else ever. I realize everything I have written in this paragraph is anathema to modern American parenting which is supposed to be based on self sacrificial martyrdom, especially for mothers. I don't care. I do now and I have always rejected all of that nonsense. Not only is it misogynistic, I also think it is unhealthy to raise children as the center of any universe. And, if we are being honest, we have children for many diverse reasons, most of them based on pleasing some need in ourselves. I don't think those reasons matter, as long as there is love and kindness in their home and in their upbringing. <br />
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I also think about love. Like in the song. When life goes on, generation after generation, it is a song that never ends. The love all our ancestors bestowed on their children has flowed down through the centuries to us and through us to our children, who will pass it to theirs and so on and forever as long as the human race continues to reproduce and parent children. I feel that so strongly now. See it blossoming in Lydia. And in Naomi. But what happens to the love in a marriage that dissolves. In a friendship that sours and ends. In a family that is fractured and estranged. In a child who passes too soon. I don't know. I can't know, Not yet. Naomi's life will most likely be swift and fleeting. I'll let you know if and when I come to any conclusions. <br />
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And now, some pictures. <br />
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The first two are Naomi all ready for school this past fall. Naomi has decided that she hates the camera and hates having her picture taken. I get a lot of side eyes, or grimacing, or looking away from the camera. She especially hates the flash. She used to love the flash and would smile, laugh and giggle every time it went off, which made for a lot of really great pictures. Oh well. The second picture is funny because you will notice that Naomi is sitting on the floor in front of a blanket covered mattress. Naomi has regular, what we like to term, Blow Outs. These are explosions of liquid feces that go everywhere. It's a terrible mess and she and we get very upset when they happen. It is very hard to keep the bowel habits of children like Naomi regulated, and so this is one of the issues that we deal with with Naomi. Naomi had an accident on the couch over the summer that was so bad that the couch could not be cleaned. So we had the mattress on the floor until we got around to getting a new and inexpensive couch. Naomi loved the mattress on the floor. She had more room to move around and more room for adults to snuggle with her. She doesn't like tight spaces. At all. So in Naomi's new house there will be a day bed in the living room for her to enjoy. <br />
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Naomi got new braces for her feet. Because she does not walk, her calf muscles shorten and need to be stretched. These are braces she can wear at night to help accomplish that. She only minds them when she is very tired. </div>
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The next three are a classic example of what I get when I try to take Naomi's picture now. Squinting at the camera, then hiding her face, then laughing when I tickle her and ask her if she's tricking Mommy. She knows she 's being uncooperative and she thinks she's hilarious for being so. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYW2dyt1hyphenhyphenrayQthNZevaiKs7dGAIgOnj7TrkuK47h9gezUs-ymQq_0LR9Dv11xb7j3Fgru5kGhZO3qFX1IPtDEo26w3abDLLs_kJftQMwge33dNeaHYhcEWCmND_f6UaL-xIz2H8gO5nA/s1600/015.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYW2dyt1hyphenhyphenrayQthNZevaiKs7dGAIgOnj7TrkuK47h9gezUs-ymQq_0LR9Dv11xb7j3Fgru5kGhZO3qFX1IPtDEo26w3abDLLs_kJftQMwge33dNeaHYhcEWCmND_f6UaL-xIz2H8gO5nA/s1600/015.JPG" height="212" width="320" /></a></div>
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That's Lydia.</div>
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More examples of Naomi's behaviors when it try to photograph her. Oh, and there's the super cheap basically disposable new couch. We love it. It's great.</div>
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Lydia in her matching outfit walking around in what she said were her shoes. </div>
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Another morning all ready and waiting to get on her van. Which she still loves. </div>
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Oh, this one. Naomi had croup again this fall. Right before we went to Disney. So close to when we went that we were afraid we would have to cancel the trip. Her pediatrician okayed her to go in the end and like I said above, she had a fabulously great time. She spent two days in the hospital and then another week recovering at home. She was really really really sick. Rob woke up in the middle of the night hearing her gasping for air and took her straight to the emergency room. It was really scary. It came on so suddenly. We put her to bed with the beginnings of what seemed like a little cold and a few hours later she was, well, unable to get enough air in to her lungs. We are so thankful Rob heard her. That's one of the very scary things about having a child like Naomi. She can't get out of bed or call to you to tell you that she is sick and if it happens in the middle of the night, well, you can find her when its already too late...</div>
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I can't stand the thought of that. When it's time to say goodbye I want to know it and do it purposefully and lovingly and I want her to be in our arms. We were there when she came to be and we want to be there when she passes on. I pray that is how it will be for her and for us, and not a horrible discovery we find on a morning we thought was going to be like any other, knowing she was alone when it happened. Our sweet baby girl, she loves to be with us. </div>
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Here's a picture from Disney. I couldn't find the rest of our pictures, but in this one she is meeting Princess Sophia. As it turns out, Naomi loves the princesses. We had no idea. So we make princesses a much bigger part of her experience now. </div>
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Naomi at the joint birthday party we had for her and Lydia. Their birthdays are only two weeks apart, and Naomi has hated just about every party we have ever had for her, so it just makes sense to celebrate them together. Also, because Lydia was quite happy to be the center of attention, Naomi was able to contentedly watch shows by herself in a quite room away from the commotion. She was not ignored, though. There was always a guest keeping her company, mostly her grandparents, which is just how she likes it. </div>
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Naomi lost her first two teeth, about a week apart. The first one at Disney, and the second one right after we got home. Her new teeth are already most of the way in. She's getting to be such a big girl. </div>
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Lydia on Christmas Eve at my parents house, which is the big celebration with my family. Like her big sister, she also hates the fancy dresses Mommy makes. This is the same dress Naomi wore for the Christmas when she was two. Lydia repeatedly demanded "DRESS OFF!" </div>
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And here is Naomi in hers. It's the same one she wore last year, as it still fits and with as busy and exhausted as we, especially me, have been, I did not have the time or more importantly the energy to make a new one. That made me a little sad, but really, she hates them anyway!</div>
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However, I have learned a few things over the years and one of those is to bring pajamas to change the children in to at the Christmas Eve party when they get fussy and are just done with their fancy dresses. Here is Naomi watching her shows in her wheelchair in the same room as the rest of the family, in her Christmas pajamas. Ah, that is another new development. We finally gave in and filled a prescription for what we call "fussy medicine" or in other words, klonopin. It's a drug used to treat acute anxiety and distress and it has been wonderful for Naomi. We use it very rarely, mostly in situations where she normally gets very upset and screams inconsolably. A side effect we have noticed is that she is less easily distressed and anxious in general. I think the drug is helping her learn that new situations are not to be feared. If you've ever taken something like xanax or ativan before a surgical procedure, you know how Naomi feels in this picture.. Like she's just relaxed with a good glass of wine or two. We wished we had embraced better living through pharmacology for Naomi much earlier. It was kind of like the feeding tube. We fought that for years too and then when we finally got it, it was like What have we been waiting for??? Our biggest goal has always been for Naomi to be happy. </div>
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And Lydia in her Christmas pajamas. I know they are ridiculous, but I could not resist and if you know Lydia you know just how very appropriate these pajamas are for her. </div>
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Lydia on Christmas morning. Note it is still black as night outside. Speaking of how Lydia makes things easier, I picked out this kitchen set to get for Naomi, eventually, when she was a newborn. Playing house was my absolute favorite as a child and I couldn't wait for her to play it too. Of course that never happened. With Naomi. But it happened with Lydia! And she loves it. Another demon exorcised. </div>
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And rather than trying to force Naomi to be in the same room as the rest of us, opening presents, which she always hates (see posts of Christmases past) and all of us being upset and crying, Naomi had a private Christmas the same place she spends every morning, on her couch in the TV room watching her shows. We put up a tree for her in there and Santa left her presents on her couch next to it. She was happy. And we were happy. </div>
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Lydia pretending to eat the fish that she got with her kitchen set. </div>
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Naomi and Mommy having "snugs and bubs" on Christmas morning. That bottle has some of the special fancy juice that Santa likes to leave in Naomi's stocking for her. </div>
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And here is Mommy opening Naomi's presents and showing them to her while she happily watches her shows. She did look over at every present, too. Which was nice. She got a lot of clothes and children's costume jewelry and hair accessories. She likes that kind of stuff, a lot. </div>
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Naomi likes to be snuggled up under this quilt my mother made in the morning. And Lydia is sitting on top of her playing. Naomi is not all that pleased, as you can see her stop hand is up. Lydia is affectionate with Naomi, she gives her hugs and kisses, and most of the time Naomi is nice enough to accept the affection without complaint. Most of the time. This was maybe a little over the top. </div>
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Naomi is her new fancy winter coat Santa brought her. </div>
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And all ready for school on a January morning. </div>
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That's it! I'll try to post again before another five months are up, but do check her facebook page if you use facebook. With our hectic, busy and exhausting lives sometimes it's just a lot easier to take a picture with my phone and post it with a little blurb. </div>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com1tag:blogger.com,1999:blog-8265861613312682909.post-58283505991931268902014-09-09T18:03:00.000-07:002014-09-09T18:03:20.510-07:00Late Summer 2014<div class="separator" style="clear: both; text-align: left;">
This post was written on August 23rd. Much has happened since then with Naomi and I will try to update the blog with the latest news and going-on soon. </div>
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We didn't have a lot of help this summer. That was by choice. I miss Naomi a lot during the school year and I wanted to have my afternoons while Lydia slept to spend time with Naomi. Up until late July, the summer went beautifully and Naomi and I were enjoying lots of Mommy and Bear time, as we call it. She is starting Kindergarten on Tuesday and she will eventually go full time. I will miss her a lot, as difficult as she is. The afternoons while Lydia napped worked out really well. Naomi and I spent lots of time together and really enjoyed each other's company. The rest of the summer did not work out so well. On the days we did not have a nanny coming we were going to go over to my parents' house for a big chunk of the day. The plan was to all swim (remember, Naomi LOVES swimming), then put Lydia down for her nap, and then Naomi and I were going to go out and about together. Naomi is an on the go girl and we like our Mommy and Naomi outings. Naomi prefers them without Lydia, and that's fine. Unfortunately, the weather did not cooperate. At all. July and August, except for the past week, were endlessly cold and rainy. Too cold and too rainy to swim most of the time. So we were stuck in the house at lot, and stuck at home a lot. We did torture Grandma and Poppa quite a few days, but without the pool to take up an hour to an hour and a half of the visit, it is a little tough. Plus, Grandma and Poppa are pretty much homesteaders on their acre of ground in the city and they are busy, busy, busy all summer gardening, and now canning and preserving. In all seriousness, I do think they like our visits, but I try to make sure they still have plenty of uninterrupted time to enjoy their summer too. </div>
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We also had a new nanny this summer. Naomi's long time nanny, Jenn, had family needs of her own to tend to and so did not have the time to help us. We missed Jenn, but we've also learned to roll with the punches. So we had two new helpers this summer. First we had my cousin Hannah, who was home from her freshman year of college. Hannah actually went to school with Naomi as her aide for quite a few days the last month of school. We had horrific staffing issues all spring. Hannah is great with Naomi and both she and Lydia really like her. Then we also had Laura (not my sister), a high school ceramics teacher off on summer break. She was also great with both girls. Lydia really really really likes to watch people draw things and Laura's artwork is much more satisfying than mine. She may never want to see another pack of crayola crayons again, though. Lydia is kind of relentless. So although change is always a little nerve wracking with Naomi, that part of the summer went really well. </div>
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Then came the nose dive part part of the summer. We were exposed to a horrific and virulent GI bug in late July. Lydia was the first to get sick, on a lovely rainy, Monday morning. We were snuggling on the recliner when all the sudden she start writhing and crying and then vomited her breakfast all over me. The diarrhea started a few hours later. The following Tuesday afternoon, after Naomi's best (as in least screaming) visit to the dentist yet, Naomi vomited all over me while I was getting her out of her wheelchair when we got home. She was like a vomit volcano for the next week, in addition to a few days of diarrhea. We knew Lydia was sick for a total of six days, but Naomi just was not getting better. The diarrhea stopped, followed by terrible constipation. And she couldn't keep anything down. Everything we fed her she projectile vomited back up. Her little belly was enormously bloated and rock hard, filled with gas. Because she has a feeding tube, we can open it to let excess gas out, which I did about every 20 minutes all day long, but nothing was giving her any relief. And she screamed. And screamed and screamed and screamed, in miserable pain for days on end. It was terrible to watch, along with her getting thinner and thinner because she couldn't eat anything. . She ended up losing at least 12% of her body weight. Which is a lot, because Naomi is on the skinny side anyway, and lacks muscle because of her disabilities. We took her to the doctor after she did not improve in the same time period that Lydia did. What happened was, the GI bug was so bad and Naomi's system is so sensitive, that it almost completely shut down her gastrointestinal system's ability to function, which made her unable to digest her food in any kind of timely fashion and unable to move her bowels, which is why she was vomiting all of her meals right back up. We had to use an enema to clear her out from the bottom (she did not enjoy that. Who would?) and then pump her full of laxatives to try to get things moving from the top. It took 3 days. I spent most of one whole day shifting Naomi from position to position to try to get her to pass the gas and move the stool through her system. It was terrible. She was in so much pain, and she hates to be manipulated like that anyway. I did not think it was possible for on small 5 year old girl to have so much gas in her system. No wonder she was screaming and crying non-stop. We also had to take her off of her good, healthy, blended diet of real food and put her on a pre-digested formula only, and we had to run it through her feeding pump nearly round the clock because of the damage the virus did to her stomach's ability to process food. She was on the formula and pump for about a week. We have been slowly weening her back to real food. In all, it's been about a month since she got sick. We are really struggling to get the weight back on her. She has gained back almost a pound of the over five pounds she lost. It is very frustrating. Naomi was very thin when we had her feeding tube placed because we were unable to get her to eat enough by mouth to maintain a healthy weight for her frame. It took a year and a half of careful feeding and thoughtful food preparation to get her to a healthy weight and all that effort and progress was all wiped out in a week. The other frustrating part is that, losing that much weight, Naomi lost a lot of her limited muscle mass. That happens to all of us when we get really sick, but when we get back to our regular activities we put the muscle right back on. It's not like that for Naomi. She has no independent ability to move and build muscle on her own. All of the muscle she lost was built up over years of work between me, Naomi and her physical therapists. Do you hate exercise and strength training? Well, Naomi does to and so she screams through a lot of her physical therapy session and activities. Her preschool physical therapist joked that Rob was going to have to give her free hearing aides because Naomi's screaming was going to cause her to lose her hearing. So that will be painful for all of us, trying to rebuild that muscle mass. </div>
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The good thing is the weather finally turned nice for the past week so we have been swimming nearly every day. And last weekend Lydia and I went to watch Naomi go horseback riding with Dakota the pony, which Naomi really loved. </div>
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Naomi starts Kindergarten on Tuesday! And she will be six on October. It is hard to believe it has been six years. Sometimes looking back, I wonder how we have survived it. One day at a time, I guess. </div>
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Here are some pictures from Naomi's summer. </div>
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<span style="text-align: center;">Silly, happy girl after a day at summer school. Naomi had two weeks of summer school, 3 days in June and 4 days in July. Starting next summer, she will go to school the whole month of July. That probably sounds terrible for most children, but Naomi has always loved school and it helps with her boredom. She struggles quite a bit with boredom because she can do so little, yet her mind is active and alert. There is a terrible mismatch between the abilities of her mind and the abilities of her body. </span><br />
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Naomi is modeling a silly headband she got as a prize at preschool for being very good and doing all of her work. She is very proud of it and smiles every time she wears it. <br />
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Lydia. <br />
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Naomi after a summer school session. She had her face painted. She looks grouchy because she is engrossed in a show, but she had a great day and was very proud of her face paintings. </div>
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Naomi and Lydia playing together on/in the jumper. </div>
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This is a picture of Naomi while she was so sick. She screamed and cried until she exhausted herself and fell asleep. That happened pretty much every day for a week. At least she was peaceful and at rest while she slept. Poor sick sweetie.</div>
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Naomi in her stander with her doll Clementine. You can see how thin her arms and shoulders got. </div>
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Lydia. </div>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-39829519134001993962014-06-28T18:25:00.000-07:002014-06-28T18:25:00.112-07:00Vacation 2014<div class="separator" style="clear: both; text-align: center;">
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Hello Blog Readers! This is Rob writing this time, first time in a while. Life has been so busy with Lydia! Playing man to man instead of zone is exhausting. Work has been busy too... So fortunately we were able to get away to Bethany Beach, DE for a week this June. </div>
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We had never been to Delaware before and decided to go there because it was closer than the Outer Banks. After the fiasco of the 11 hour pilgrimage last year, we tried everything to minimize travel time like going Friday to Friday to avoid a beach rush. Letting the van GPS pick the "preferred" route was not a great decision, however. It routed us around the DC beltway where we spent an hour in bumper to bumper dispite hitting the area at 1:00 pm. So the ~300 mile trip took seven long and harrowing hours and we arrived after the rental place was closed and had to get our keys out of the lock box. </div>
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We rented a house just off of the boardwalk that was rustic but had a nice layout. Usual beach stuff. House seemed to be built in the fifties. Here are some pictures:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUgKw4BR5X6e5132W_AZz4FrGpNBruEyPYogzsZfljBn_TRloTXiBdDLSbTwPBE5IvdUA6F-WL4Q4V1Sp1YHKXtbnr_ICzhyphenhyphenFj0ohmKTzNeNsWQpfi7RqpIbGvyLVKJKVcnHVDw3Tik4Og/s1600/vacation+bethany+2014+021.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUgKw4BR5X6e5132W_AZz4FrGpNBruEyPYogzsZfljBn_TRloTXiBdDLSbTwPBE5IvdUA6F-WL4Q4V1Sp1YHKXtbnr_ICzhyphenhyphenFj0ohmKTzNeNsWQpfi7RqpIbGvyLVKJKVcnHVDw3Tik4Og/s1600/vacation+bethany+2014+021.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">kitchen</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzF_6uj-tAlJMm6dLHAv-9-TbMM0KND2T-F3LTYoHCMQiTkU6Y9Rq-1EAefN1l6yAbjUM-mXAopY6uW8w21doe4kWPH9unduYLN944Th6K7JiP3HnfCCWcQjFmTfFj31jlCNDi34nX8kNO/s1600/vacation+bethany+2014+022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzF_6uj-tAlJMm6dLHAv-9-TbMM0KND2T-F3LTYoHCMQiTkU6Y9Rq-1EAefN1l6yAbjUM-mXAopY6uW8w21doe4kWPH9unduYLN944Th6K7JiP3HnfCCWcQjFmTfFj31jlCNDi34nX8kNO/s1600/vacation+bethany+2014+022.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">kitchen</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHxWSdfNK9XczC0VJYq4NZJRn6AfzOj2prXSewVCZsj4eN1R0ViUpIXlqWV58QSfDajV_3lBE1NhZf5lYQqBhXuDyJTK_-uvKwzbjrDIypMifQdsubpy4_vOsz4m3-Tj-Dj-aituXdhspE/s1600/vacation+bethany+2014+023.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHxWSdfNK9XczC0VJYq4NZJRn6AfzOj2prXSewVCZsj4eN1R0ViUpIXlqWV58QSfDajV_3lBE1NhZf5lYQqBhXuDyJTK_-uvKwzbjrDIypMifQdsubpy4_vOsz4m3-Tj-Dj-aituXdhspE/s1600/vacation+bethany+2014+023.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">den</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">dining room</td></tr>
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The one unusual feature was that the upstairs bathroom door was barred shut when we got there. Not locked, it just was stuck at the bottom and couldn't be opened. It was odd and a little concerning: did the cleaning person pull a Lane Pryce in our beach house? The next day a maintenance man had to climb through a window - it turns out the access panel to the tub fell off and wedged against the door. <br />
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We turned in early the first night. Which was good. Because the kids seem to think the eastern shore is in a different time zone and wake up every year at 5:30 a.m. Only there was no Aunt Jerry to rise with the roosters. </div>
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We like to settle into a routine. Take the kids for a walk to get coffee and then hit the beach early. Bethany was great for walking. A nice coffee shop was 3 blocks away. We hit the beach at about 10:00 the first day. Lydia added a new wrinkle: an aggressively mobile speed demon that could not be trusted. We also took sand toys to the beach for the first time. The solution was for her to be tethered to one of us at all times.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtyGlgF0Xr3MKs5HSDuflnQDIyhOK05X9bHXuIKC6H73h4sv-mP0ulUphjeEF3nccWjrX6gAW44pWDMqmz97BiIlvwU6eHXID_idu1uq-eX759PSpFPZTKjeDFaguNexiwyjbDyZqcYnwh/s1600/vacation+bethany+2014+066.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtyGlgF0Xr3MKs5HSDuflnQDIyhOK05X9bHXuIKC6H73h4sv-mP0ulUphjeEF3nccWjrX6gAW44pWDMqmz97BiIlvwU6eHXID_idu1uq-eX759PSpFPZTKjeDFaguNexiwyjbDyZqcYnwh/s1600/vacation+bethany+2014+066.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia with her tether and "tar" sand toy</td></tr>
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Naomi of course loves the beach and in vacations past we took the jumper:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj72GwpaRPISW89pydvtqiCFuOnldtIkJjnKhxOyJ8nCgJ67GhPW3SMJIQ2IpO_SwxnviuD3z3eQe_DTAKeEqFibYDshS6aqnUHwv0mTMuHkPydb1I6IcCM79wRcnpjBorY_sED2DVko1XI/s1600/vacation2012+073.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj72GwpaRPISW89pydvtqiCFuOnldtIkJjnKhxOyJ8nCgJ67GhPW3SMJIQ2IpO_SwxnviuD3z3eQe_DTAKeEqFibYDshS6aqnUHwv0mTMuHkPydb1I6IcCM79wRcnpjBorY_sED2DVko1XI/s1600/vacation2012+073.JPG" height="239" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stone Harbor 2012 </td></tr>
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But she is bigger and we didn't rent a monstrous van:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifxuMfUhyphenhyphenS_UytzhVLGnA1khbYNDzcZWt2-yM45jEpVwOMU7u8uSxIYd7KlDyivtiZrfhvspkGteADSdSnvN9Y1j6ZoVE0i24pgmJbj6SiQrXLqiAcW25pPsHHH0d-bVT0kE00Vm6L4tJA/s1600/vacation+2013+021.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifxuMfUhyphenhyphenS_UytzhVLGnA1khbYNDzcZWt2-yM45jEpVwOMU7u8uSxIYd7KlDyivtiZrfhvspkGteADSdSnvN9Y1j6ZoVE0i24pgmJbj6SiQrXLqiAcW25pPsHHH0d-bVT0kE00Vm6L4tJA/s1600/vacation+2013+021.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Method of transport Nags Head 2013</td></tr>
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She was very content to be on the beach laying on a towel<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSTE1LlWzHzVRzhai3hx80nPabuqFDjgS_UC_Km4c10wIYpFDPoNfNKB6JVgpx69gXuB5XHVx5MHBXG1GowQOdCgUUg84GU9qkcQfqSsGL15BH6GY50jB-51tRzsHetzoOWdMMhyphenhyphenFl-_ot/s1600/vacation+014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSTE1LlWzHzVRzhai3hx80nPabuqFDjgS_UC_Km4c10wIYpFDPoNfNKB6JVgpx69gXuB5XHVx5MHBXG1GowQOdCgUUg84GU9qkcQfqSsGL15BH6GY50jB-51tRzsHetzoOWdMMhyphenhyphenFl-_ot/s1600/vacation+014.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cheesy grin</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bear</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Wound up bear</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Still wound up</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWW-OrLklfWxeloJyMzvRoacD6QLGZ3j_xRs8btbwRKEnDlhau0o5MjyGzmVSnunjWSpxB1BXW8QZCKnFvrAJhlElRfDHucaJIc-xgkes0KStGdjPq6QGJ0ZbsD2Cf-OgXCtzbniALzNAd/s1600/vacation+051.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWW-OrLklfWxeloJyMzvRoacD6QLGZ3j_xRs8btbwRKEnDlhau0o5MjyGzmVSnunjWSpxB1BXW8QZCKnFvrAJhlElRfDHucaJIc-xgkes0KStGdjPq6QGJ0ZbsD2Cf-OgXCtzbniALzNAd/s1600/vacation+051.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not as wound up</td></tr>
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So most days we spent time at the beach from 10:00 until about 12:00 when Lydia went down for her nap. The first day our friends Bill and Sarah joined us. They have been on vacation with us almost every year for the last six: they are gluttons for punishment! This years special treat: Lydia running around at 7:00 am - dum dum dum dum dum, dum dum dum dum dum. Lydia did take a shine to "Uncle Biwl" They are great friends and very good with Naomi.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKfXi5H0cBEqx8N4J7cCvvmrSTB2MyWwRjNeYX6-4PF1mY8PBi5t0TsZs312sgyHQwo3dOIxdXPxs6o9fuB-GlIYyHxl9MEb77tk-uZ8px4Pn_5MR41-jMvxfPk_Ldw0DWMO7Aj_xXIMMY/s1600/vacation+bethany+2014+107.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKfXi5H0cBEqx8N4J7cCvvmrSTB2MyWwRjNeYX6-4PF1mY8PBi5t0TsZs312sgyHQwo3dOIxdXPxs6o9fuB-GlIYyHxl9MEb77tk-uZ8px4Pn_5MR41-jMvxfPk_Ldw0DWMO7Aj_xXIMMY/s1600/vacation+bethany+2014+107.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia with her new pal</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-ZMhzgwb_mg21-S_1MshpFb1CazfBDwcAWmJTpfDBb3Jr6ZAAvUZn2ucOflJifwnyBziGGdOn18HQxwlHy17qkh9QZRIlAwgf-QH8cWxC38LRH_vUfHoRJeFQ8pnV3D0Y-qr-grrX3I4H/s1600/vacation+bethany+2014+111.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-ZMhzgwb_mg21-S_1MshpFb1CazfBDwcAWmJTpfDBb3Jr6ZAAvUZn2ucOflJifwnyBziGGdOn18HQxwlHy17qkh9QZRIlAwgf-QH8cWxC38LRH_vUfHoRJeFQ8pnV3D0Y-qr-grrX3I4H/s1600/vacation+bethany+2014+111.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Sarah</td></tr>
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That was pretty much the routine. One morning we went to the park. They had a really nice swing for Naomi.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIO-ciC21W9LB1fe5YSLmWfbZfViFUpbW2GxLuNiEAKvJa7crjoc-2kiICiQE-PcxM5HVIOiqJ5z7fz9rIgn5aliq0N9a1mN6UEn52b7TsgSdeTwYJEqW_uJpPj2NDEm2UdcSWVrxVcUEl/s1600/vacation+bethany+2014+086.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIO-ciC21W9LB1fe5YSLmWfbZfViFUpbW2GxLuNiEAKvJa7crjoc-2kiICiQE-PcxM5HVIOiqJ5z7fz9rIgn5aliq0N9a1mN6UEn52b7TsgSdeTwYJEqW_uJpPj2NDEm2UdcSWVrxVcUEl/s1600/vacation+bethany+2014+086.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi in her swing.</td></tr>
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And Lydz got in on the action too<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW7kKz9930e7MbYm5yt-pjl8FKZ7SX51PZI3LRe_BWyQUNm3UyX1f1bXGtAflxUUy1IxfWB_0YhYD8s8OIYdDXod7izaM796CMiGGU_PkLv2Kbv_gTXp7sScvw2XXfowFl31mxHdc301GD/s1600/vacation+bethany+2014+096.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW7kKz9930e7MbYm5yt-pjl8FKZ7SX51PZI3LRe_BWyQUNm3UyX1f1bXGtAflxUUy1IxfWB_0YhYD8s8OIYdDXod7izaM796CMiGGU_PkLv2Kbv_gTXp7sScvw2XXfowFl31mxHdc301GD/s1600/vacation+bethany+2014+096.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"wing" ing with Dad</td></tr>
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<br /><br />There was stretch out time with shows - especially on the day it was nearly 100 degrees. That was the day we went on a road trip to Rehobeth. We didn't last long.<br /><div class="separator" style="clear: both; text-align: center;">
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There was lots of snuggling</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguj3rigd7Fx_LLr5401O7qvlgZIHbklRXjuTgOwubDKKHa5vca-mxT3tO6AtjcFd_TKwFn9PXTkpx5mXwS7P3wNaYKneSXuVyuKKFqniuTKikdtvn52b2ryLgnlkoAJUF9fSzVCpCj6dyl/s1600/vacation+bethany+2014+081.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguj3rigd7Fx_LLr5401O7qvlgZIHbklRXjuTgOwubDKKHa5vca-mxT3tO6AtjcFd_TKwFn9PXTkpx5mXwS7P3wNaYKneSXuVyuKKFqniuTKikdtvn52b2ryLgnlkoAJUF9fSzVCpCj6dyl/s1600/vacation+bethany+2014+081.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy and her girls</td></tr>
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Lydia tried on some accessories<br />
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And learned to drink from a straw</div>
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Naomi turned Bethany into a nearly nude beach</div>
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And of course Daddy and Naomi we sea lions for hours every day</div>
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<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/drPCFNwx6Jc?feature=player_embedded' frameborder='0'></iframe></div>
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Lydia chose to get up one morning at 5:15 and I took her to the parking lot across the street. She had a great time running around in her PJs and pointing and saying the letters. </div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipucj2BMcd48P1WKZmj1O_O4gOv-7DGWyoZuALbOuDtS9sEpg5gRhBq_FDiM69mqqStuJQ2xXkdgMY0MkwNU0oSvPyCO6g_XOCRrh-4PHCOwzrjxOjHdQ4-XI9FGT4radLSDlofJscIEwn/s1600/vacation+066.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipucj2BMcd48P1WKZmj1O_O4gOv-7DGWyoZuALbOuDtS9sEpg5gRhBq_FDiM69mqqStuJQ2xXkdgMY0MkwNU0oSvPyCO6g_XOCRrh-4PHCOwzrjxOjHdQ4-XI9FGT4radLSDlofJscIEwn/s1600/vacation+066.JPG" height="320" width="240" /></a><br />
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Naomi's hair got blonde and she got tanner than kids are supposed to</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguxX0ta_h19OPgL72baNhY8VbUBb_9VEFsUQPE3MxPXTDHFI6rDdKExzMdrjZK78ybfn99f-shCgF0yRVBZgXJ6-u_tHq1qlUGbikH3gVZQy2GocXOBU5UGbTO5DsYPryiFMrOXkNj5F4H/s1600/vacation+bethany+2014+044.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguxX0ta_h19OPgL72baNhY8VbUBb_9VEFsUQPE3MxPXTDHFI6rDdKExzMdrjZK78ybfn99f-shCgF0yRVBZgXJ6-u_tHq1qlUGbikH3gVZQy2GocXOBU5UGbTO5DsYPryiFMrOXkNj5F4H/s1600/vacation+bethany+2014+044.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goldilocks</td></tr>
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Lydia got tan too- she climbed on the furniture</div>
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The week went fast like everything does. Finally, Lydia was tired on the way home.</div>
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Another vacation in the books. Here is the family picture. Total chaos just like you would expect.<br />
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-36269127618238044262014-06-12T19:58:00.002-07:002014-06-12T21:23:39.552-07:00Late Spring UpdateWhere has the time gone? We've been busy doing some big things for Naomi and not so busy just loving living with our two girls. There have been many, many, many long afternoon walks with Mommy and the girls. And many evenings spent wandering around the yard. Naomi and Lydia both love being outside. After all those months of that especially long, especially cold, especially snowed-in winter we had, we all just want to be outside in the sunshine and the fresh air. We've been so busy having fun that we've barely taken any pictures of the girls. Which I feel a little disappointed about because they will never again be the girls we didn't photograph so much these last two months, but sometimes it is nice to be fully in the moment and not behind the lens of a camera. Oh well. There are "disappointments" in life like not taking enough pictures and there are DISAPPOINTMENTS in life like your first born child never reaching any developmental milestones past the 4 month mark. And we very well understand the difference. <br />
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Lydia has become wild and silly and affectionate and oh so playful and full of herself recently. She loves to give us hugs, running toward us at full speed, arms out stretched and then taking a last flying leap in to our arms. It's intoxicating to be loved so fully and unabashedly. We soak it up, knowing that this season with her, like all seasons, won't last forever. <br />
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Naomi has been pretty good recently. We have had her usual runs of 5something am wake up times for a week or so at a time, but she has been doing very little screaming recently, and for that we are thankful. So very thankful. The screaming grates against our compassion in a way that is very painful and difficult to endure. She finished up her last year at preschool last Friday. She has 6 days of summer school in late June and July, but her time there is essentially over. It is hard to say good bye to that season in her life. She has been so very happy there and so very loved and understood. She has grown so much socially and emotionally. Such a big girl these days. And her teachers and staff were beyond wonderful in every way. She had her end of the year performance last week too. It's when the class gets together and performs a few songs and routines from their school day. I always love it. I went to school with Naomi one day the week before and was able to help her practice. I am so glad I got to do that. She was smiling and laughing the whole day. Her teaches said she was that way for every practice. Unfortunately, she got very upset for the actual performance and was ramping up to her fire drill sire scream. I had to intervene to settle her and keep her calm. I think she was unsettled by all of the people in the audience. Naomi does not deal well with sudden change and the environment was different than what she practice. We felt bad. We can't help but wish she had been her silly cute fun self for everyone to see, rather than her upset, screaming, unsettled self. She did get to hold the flag at the beginning and was happy doing that part, but it was during the songs which she enjoyed so much every other time that she got upset. Poor Naomi. We so often feel like we can't win. Plus, Daddy, Grandma, Poppa, Nanny and Grampy who all came to see her performance didn't get to really see her perform. Oh well. Like I said before about disappointments...<br />
Lydia, Grandma and I, and Cousin Hannah, who has been going to school with Naomi as her aide off and on since she came home for the summer after her freshman year of college several weeks ago, all went to see a slide show of pictures from the school year on Friday and then went to a local outside ice creams shop to celebrate the last day of school. Naomi declined the taste I offered her, but she did enjoy sitting out in the sunshine with all of her friends from school.<br />
I love my girl so much.<br />
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<tr><td class="tr-caption" style="text-align: center;">Clementine and I are trying to watch a show already. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi participating in dying Easter eggs by being in the room and not screaming, whining or crying. Admittedly, she was watching a show. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ8kbNtL-38n0ewM9EoGn3OsoKEQPijCRjM3WYvXRrilOyXPzSk99K6_s1gOiQLw32dTHFXXYxgXG_ZuARvM24lF52LyIeFzGP6su54nycELcYOQ1JsDMOkBXrdt5uxXkTyhR3G_O_8Ykv/s1600/113.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ8kbNtL-38n0ewM9EoGn3OsoKEQPijCRjM3WYvXRrilOyXPzSk99K6_s1gOiQLw32dTHFXXYxgXG_ZuARvM24lF52LyIeFzGP6su54nycELcYOQ1JsDMOkBXrdt5uxXkTyhR3G_O_8Ykv/s1600/113.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with her kitty pillow the Easter Bunny brought her. Naomi loves kitties.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXg4GIj4oUGAd7tb7XYrnCzHPXYVqmhQjxZMtPzVItlW6o71hrCiI_NzMpe5krCE9OJOreMZ1HNtWSmqxRSmTtt4j3eXDxLT_CGSkkmNI91gl9BbCsV7lin3kGXMPwvXexaHgkwLfzuIk_/s1600/131.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXg4GIj4oUGAd7tb7XYrnCzHPXYVqmhQjxZMtPzVItlW6o71hrCiI_NzMpe5krCE9OJOreMZ1HNtWSmqxRSmTtt4j3eXDxLT_CGSkkmNI91gl9BbCsV7lin3kGXMPwvXexaHgkwLfzuIk_/s1600/131.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi tasting a marshmallow peep on Easter morning. She did not enjoy it and let it fall out of her mouth. She also tasted chocolate. It did not fall out of her mouth because it melted first. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0we4Zz0Z7b4xOmksQQm2fl5Q0BkEupj6gGri5fK1wckaValuD3FAo6HGoHwCOi3hjVkT9LzOeb024rN4b-KPtc66PwZf2IAh730XfMBtZc-G0NMpUyabN5ajRecL78qRYpBd3r4OynLcx/s1600/001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0we4Zz0Z7b4xOmksQQm2fl5Q0BkEupj6gGri5fK1wckaValuD3FAo6HGoHwCOi3hjVkT9LzOeb024rN4b-KPtc66PwZf2IAh730XfMBtZc-G0NMpUyabN5ajRecL78qRYpBd3r4OynLcx/s1600/001.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All ready to get on the van and go to school. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizNLLT5KTxFs8tlG_Rjyedbgtas48abEGQQweL6g0E6NuVxOAN345aaexmK2v96DoFmifnn7orFfv2tjlDIcEEi3hnAI96zc7Gn7BlR9_oDwV58CfjxuScXqnS4d_XLMWxc3iFRaR3el43/s1600/022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizNLLT5KTxFs8tlG_Rjyedbgtas48abEGQQweL6g0E6NuVxOAN345aaexmK2v96DoFmifnn7orFfv2tjlDIcEEi3hnAI96zc7Gn7BlR9_oDwV58CfjxuScXqnS4d_XLMWxc3iFRaR3el43/s1600/022.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi proudly displaying her butterfly mask she picked for being good at school and getting all of her stickers on her chart again. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaqltQfCgwxO8UFoWk-3Q8NchgjyH0ix0POAl1RcWQdt0mR3Yes6otOoIzSyf1WTBscXu1Q9cV2gBVf1-DngtG4EQEk7mxLrt1t6NC2qVL5lPMaiu1JcgxYnyaKq8-Ut5CpzYvMdETI9l6/s1600/034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaqltQfCgwxO8UFoWk-3Q8NchgjyH0ix0POAl1RcWQdt0mR3Yes6otOoIzSyf1WTBscXu1Q9cV2gBVf1-DngtG4EQEk7mxLrt1t6NC2qVL5lPMaiu1JcgxYnyaKq8-Ut5CpzYvMdETI9l6/s1600/034.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi relaxing in her bean bag chair and listening to her songs. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidABUkIFruL-1yLA6HARdhpXC2LWCWcrDt5660YozPt8_xD3fOWXWQlXS8VHh_ivGsuGYNdUVuWswhBR3fpycyO6pGE2LSX6QxMPZvn3XJ5RJ8m8cCVQS13GuVWzJuSQ3U8QfuUK_vqp7u/s1600/086.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidABUkIFruL-1yLA6HARdhpXC2LWCWcrDt5660YozPt8_xD3fOWXWQlXS8VHh_ivGsuGYNdUVuWswhBR3fpycyO6pGE2LSX6QxMPZvn3XJ5RJ8m8cCVQS13GuVWzJuSQ3U8QfuUK_vqp7u/s1600/086.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Princess Naomi and Lydia going for a wagon ride. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiJJ5ksaY_-4roNnhlwad1m3nzPW4D1Egtd9RS4WbF4zpM1Db_CNcazh7LnewqFWdTaYl9DuLBMcp6HkwxTk8NV1ufgXfkaNaO32LAl1nwiDJKMlpnkjHxFC72ZjPa3XlouUMJ_Cn6Ht1k/s1600/018.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiJJ5ksaY_-4roNnhlwad1m3nzPW4D1Egtd9RS4WbF4zpM1Db_CNcazh7LnewqFWdTaYl9DuLBMcp6HkwxTk8NV1ufgXfkaNaO32LAl1nwiDJKMlpnkjHxFC72ZjPa3XlouUMJ_Cn6Ht1k/s1600/018.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi all snuggled up asleep with Kitty Duchess and her cozy blanket at night.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV067npf_yelOldTk1HxT2TqgdwGtJJuYUTvYOyeZmb94CtBQQI4xL0HGKP_xUWETN2Qc38-qH065oNXDtHBOh5fOZuUrDWCH1Ri3veJhsECzjHr2rkCWEd9igx9QHjjfRKVYRhkSDaotf/s1600/043.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV067npf_yelOldTk1HxT2TqgdwGtJJuYUTvYOyeZmb94CtBQQI4xL0HGKP_xUWETN2Qc38-qH065oNXDtHBOh5fOZuUrDWCH1Ri3veJhsECzjHr2rkCWEd9igx9QHjjfRKVYRhkSDaotf/s1600/043.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Lydia on the swing set. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJUgi7dMwtmFK9dmUe1Rpard67sCtjQOXmGvohBnpxGKVMaUZTbm5FUa-50TBALB5CVul-CUGzB4cM4nNKAd1MxOLXXl6wAmQoeSSz2R-wLqH5mUHZgcagqjnjvRdbJMbyBWwyCK3KjIo-/s1600/070.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJUgi7dMwtmFK9dmUe1Rpard67sCtjQOXmGvohBnpxGKVMaUZTbm5FUa-50TBALB5CVul-CUGzB4cM4nNKAd1MxOLXXl6wAmQoeSSz2R-wLqH5mUHZgcagqjnjvRdbJMbyBWwyCK3KjIo-/s1600/070.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia requested that all of these ribbons be put her her hair. She likes to do this. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicL7ZWV81N0GSwWNVLKah7lgeIP8t_MmtJmAV4nvmavTJ3OE9LyCqM7dnB6JcrE-euMley6tz5-0ptanpdZDHZvbx20DnDWzbG1G4623qQ9hWTlSVOxw6-JhpIMQh7XloxktZR2EeWn99I/s1600/078.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicL7ZWV81N0GSwWNVLKah7lgeIP8t_MmtJmAV4nvmavTJ3OE9LyCqM7dnB6JcrE-euMley6tz5-0ptanpdZDHZvbx20DnDWzbG1G4623qQ9hWTlSVOxw6-JhpIMQh7XloxktZR2EeWn99I/s1600/078.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy trying to calm and\ upset Naomi at her school performance. She settled and smiled and laughed briefly and then remembered that she was upset.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYuXmskg_GLTA9KqdsAh9N_hyn6WQRTyWnScOSqPJCODpyiwLs_yaFGlYpNa_PmmJKuP7IT_h3an814f4a7IuKDxDRDCmxuGSVUVFZpAHEKwZJPN61MCFCUIJG1v4c3nt_CljDem65nqXh/s1600/083.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYuXmskg_GLTA9KqdsAh9N_hyn6WQRTyWnScOSqPJCODpyiwLs_yaFGlYpNa_PmmJKuP7IT_h3an814f4a7IuKDxDRDCmxuGSVUVFZpAHEKwZJPN61MCFCUIJG1v4c3nt_CljDem65nqXh/s1600/083.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi being held by Mommy during her performance. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmde241PVvDPv_nc4DzpHKxMv-gR60lndwhjQbotgrl7wK8AAtwM4SgnZ8ELmXp8EBMReQFPQZsDEQC_bmBN-qZ97vz70aVmTcNl7M2ytr3y45Lpe7ABEBqw2yqJCLaHVM7k-7xLRE9rul/s1600/084.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmde241PVvDPv_nc4DzpHKxMv-gR60lndwhjQbotgrl7wK8AAtwM4SgnZ8ELmXp8EBMReQFPQZsDEQC_bmBN-qZ97vz70aVmTcNl7M2ytr3y45Lpe7ABEBqw2yqJCLaHVM7k-7xLRE9rul/s1600/084.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and her friends getting their certificates.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXVZtdoFrtvbduWmJ5O-zD7e9-JeyoHKaxi-tbH2ZgiPeo0SrNdJmM_KvFRWpJ8yu8yoMAj1-kxtNr2RBWX7VjEA9arRuRoGelkv5lQjOppgxCpIwkSyTYCNHmXmmoXecqVvcbDVra52L8/s1600/003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXVZtdoFrtvbduWmJ5O-zD7e9-JeyoHKaxi-tbH2ZgiPeo0SrNdJmM_KvFRWpJ8yu8yoMAj1-kxtNr2RBWX7VjEA9arRuRoGelkv5lQjOppgxCpIwkSyTYCNHmXmmoXecqVvcbDVra52L8/s1600/003.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi thinks she is hilarious when she chews on her rag and won't let you take it out of her mouth. She does this to Daddy at night when he tries to brush her teeth too. She thinks that is even more hilarious. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj110v2n_oEx0IUnYXoDArD1wQo6zWCew2ITY2jBItYyi5FX8vw4Xrkr_zwq2HnAGFbX0oZ45CrJQkjS5HpV97zLbu7w3MApHJoMBWOnAoeqT9fX9XjQDBEpBiLSnAyOz4N_bjbvWbgZuyu/s1600/036.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj110v2n_oEx0IUnYXoDArD1wQo6zWCew2ITY2jBItYyi5FX8vw4Xrkr_zwq2HnAGFbX0oZ45CrJQkjS5HpV97zLbu7w3MApHJoMBWOnAoeqT9fX9XjQDBEpBiLSnAyOz4N_bjbvWbgZuyu/s1600/036.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia likes to perform for herself in the mirror. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-U2LGG9mVDzqkgeDb9DL1AEG3m2nVebdOpPLq2hptV1ab2PTimXjN-UyvH1x4Pwrhr4uBo7NIkWxrIIiedXPfBoTgtdyS41ErC-3Hp86Gmq9_mN1E20sCsCW8twg8zKyJrt0hbTTZxPZ9/s1600/066.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-U2LGG9mVDzqkgeDb9DL1AEG3m2nVebdOpPLq2hptV1ab2PTimXjN-UyvH1x4Pwrhr4uBo7NIkWxrIIiedXPfBoTgtdyS41ErC-3Hp86Gmq9_mN1E20sCsCW8twg8zKyJrt0hbTTZxPZ9/s1600/066.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She also likes to run through the sprinkler in the garden and get covered in mud. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOS37axiZVAsvOPpjrV2cQ-mpczZEyFBKusnDW-FwdzVzuqifqXLMdiPjyF_X44P5V0rz8Svajm-Y8sQlJZDCrIeSjZoMfpKk1rdXgeYFm0dX8aNor_T9Y8JeoEuqB5nI4AOSnhMfMCsjf/s1600/070.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOS37axiZVAsvOPpjrV2cQ-mpczZEyFBKusnDW-FwdzVzuqifqXLMdiPjyF_X44P5V0rz8Svajm-Y8sQlJZDCrIeSjZoMfpKk1rdXgeYFm0dX8aNor_T9Y8JeoEuqB5nI4AOSnhMfMCsjf/s1600/070.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi is modeling her costume for her end of the performance. It really was so cute. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX28XZtgRTZWsMpivzzMK5mPA42QbQpDMCQsEhUJ8yQ0KyyJoBbPkHD9TUhuRCeIuayAtSrV19y4-bo2LQYuPCytPYyF8xXnjGJ5HiMQYm1CF4IUf7w7n2N_7HfBDGy4pj1HLniRSfWAw8/s1600/088.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX28XZtgRTZWsMpivzzMK5mPA42QbQpDMCQsEhUJ8yQ0KyyJoBbPkHD9TUhuRCeIuayAtSrV19y4-bo2LQYuPCytPYyF8xXnjGJ5HiMQYm1CF4IUf7w7n2N_7HfBDGy4pj1HLniRSfWAw8/s1600/088.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi all ready for school on her last day of preschool. </td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-36397707507226493722014-04-08T11:20:00.001-07:002014-06-12T21:38:20.769-07:00Truth Telling There are things that are easy to write about on this blog and things that are difficult. It's easy to write the fun posts, like the most recent one about Naomi's relationship with Lydia. It's neither easy nor difficult write about our current emotional responses to Naomi's illness. The journalistic type updates on Naomi are also rather benign. The historical posts are fairly difficult go write because they require reliving the most difficult and painful experiences of my life. Then there are the posts I want to write but have yet to because they are very, very difficult. It is difficult to write these posts because our culture demands relentless optimism, relentless positivity, relentless looking on the bright side. It's stifling. And it's not natural. And it's not real. I don't believe in pretending that things are something that they are not. For example, I have been wanting to write about how <i>other people</i> respond to Naomi's illness, and, even harder, how they respond to <i>us</i> as we navigate this unending nightmare. It is very easy to share when people respond with warmth, compassion, tenderness and self sacrifice to our situation. Unfortunately, the responses are not always positive, sometimes they are shockingly negative, sometimes they are selfish, and sometimes they involve jealousy, which I frankly did not think was possible. I've learned a lot about myself and Rob during the past 5.5 years; I've learned even more about other people...a lot more than I have ever wanted to learn in some cases. This life has a lot of hurts, heartaches and disappointments that have nothing to do with Naomi directly. Some of the wounds are very deep. Sadly, through the online community I have found of other parents dealing with severely disabled children, our experiences are not unique. They are all to common. I am waiting to write more on this topic until I have fully confessed all of my sins related to dealing with the tragedy our little family was dealt. It seems just and fair to me to share first all of the logs in my own eye until I point out the specks in the eyes of others. I will do so though, eventually, because, as I have stated previously, my objective with this blog is to share as plainly, baldly, and directly as I can, what it is really like to have a child like Naomi, and part of what it is really like has a lot to do with other people.<br />
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The other difficult topic is the one I am writing about today. This topic is particularly difficult because it has a political bent and that is a topic I try to avoid on this blog. This blog is not meant to be controversial, per se, and it certainly was not designed to be a forum about, or even a commentary on, the cultural and political landscape of the United States of America. However, the events of the past few weeks have led me to conclude that, as per my stated purpose of this blog, to not address it would be remiss on my part and would leave part of the picture I am trying to paint very conspicuously empty. This topic also touches on how <i>other people</i> respond to children like Naomi, but in a more oblique, more impersonal, way. This topic deals with the public at large, with the interests and priorities of our citizenry not as we claim them to be, but as they really are based on the choices we make as a society every day, based on the people we vote into or out of office, based on how we spend our time and our money and our resources, based on the corporations and charities we support, or fail to support. Today I am going to write about The System, and about the assistance, or lack of, that families like ours receive every day. To be blunt, I am going to write about the utter lack of help and support received by families like ours caring for children like Naomi. I am going to write about the fallacy of the notion that all social services can and should be provided by churches and private charities. (I had to pause after I wrote that last phrase, 'churches, and private charities', because I was laughing so hard about the naive absurdity of the notion that either type of institution, or its members, has the means or desire to provide those services on anything near the scale on which they are needed.) I am going to write about the fallacy that communities and families can, do or will take care of their own. <br />
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Please understand that I am not painting with a broad brush here. There is a small but significant contingent of people who care not just with lip service and good, though never acted upon, intentions, but with their dollars and cents, with their time and their skills, with what really matters. These are wonderful people. These are humane and compassionate people. We have plenty of these people in our extended family. They are not the majority. The majority are truly indifferent, I suspect not out of any flaw in their characters, but more out of a self-satisfied comfort in the ease and fortune of their own lives, more out of satisfaction with aspirational do-gooding rather than actually doing anything good. These are the lucky majority. The people who are content to ignore all of the Naomis and all of their families because as long as bad stuff happens to other people and not to them, it's okay. They don't want to think about us because it might make them sad and that might rain on the parade of their fortunate little lives where the only things that go wrong are the ones that don't really matter. It does not mean that these people are bad people. It probably means that they've just never really thought about it before. And that's okay. If you are one of these people, I'm asking you to start thinking about it now. Then there is the contingent that is outright hostile. This contingent is not small. These are the people who resent the burden Naomi's care places on public coffers. These are the people who give us nasty looks when Naomi melts down in public because something she can't explain to us scares her, or she is in pain, or any of the other reasons she cries. These are the people who think it's unfair that Naomi gets to jump the line at an amusement park while their precious healthy child has to wait an extra 3 minutes. These are the families who use and condone words like "retard" as an insult, the ones who don't reprimand their children for making fun of children in wheelchairs and braces. These are the adults who mock little children in adaptive equipment in public (true story. Not mine, thankfully.) These are the people that resent the accommodations that our family needs as we deal with Naomi's disabilities and attack us with cruel words and ugliness because those accommodations momentarily or occasionally inconvenience them or disappoint their expectations. These are the people that never stop for one moment to imagine what it might be like to live the life that we do. <br />
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Yes, the truth of the matter is that there is little to no help in any formal, institutional way for families like ours. I know of families with medically fragile children who can only be left in the care of skilled personnel that have been on the waiting list for respite services in our state, Pennsylvania, for years upon years. I know of families who have appealed to their church leadership for in home assistance with tasks like laundry and housecleaning and maintenance only to be told that churches don't organize those types of things anymore because of fears of liability. I know of a few private charities that provide financial and other assistance to distressed families like ours, but they are few and far between and only make the smallest of dents in the level of need that exists. I know of families who are hauling 125 pound children with the skills and abilities of an infant in and out of the backs of cars because they can't afford a wheelchair van. <br />
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The truth is that children like Naomi are very very very expensive and even if you have private health insurance and/or medicaid for your child (all children like Naomi are eligible for medicaid) it doesn't cover all areas of need and often has a dubious opinion of what is and is not medically necessary. The state of Pennsylvania, in all of it's wisdom, closed the state run medicaid program and forced all disabled children in to for profit managed care plans. You know how this works, right? The managed care plans are paid a flat fee to provide healthcare services to a child like Naomi. If Naomi consumes few services, the managed care plan makes a profit off of her. If she consumes many services, the managed car plan loses money on her. How can a managed care plan try to assure that it makes a profit off of Naomi? By denying necessary care and equipment as "not medically necessary" or "lacking documentation" even when the medical necessity and documentation the company demands is cleared spelled out in the request for service. So families like ours must not only care for our sick, needy, helpless children, but we must go around and around and around with these managed care plans over denials of services that are spurious at best. This is one of the things we have been dealing with over the past few weeks. If you have the time and energy and knowledge to fight long and hard enough you can often win, but what these companies bank on is that we have none to little of the three, and if we have it for one fight, we won't have it for the next, and the next and the next, and the next and the next. And so they play an endless game of cat and mouse where they know the denials won't stand up to scrutiny in the courtrooms but they continue to issue them anyway to exhaust our already limited emotional and time resources and then pocket a buck off of Naomi and all of the children like her. They deny and obstruct in the hopes that families like ours will give up and not force them to provide the care to which these children are legally, let alone morally (and who is it that says we are a "Christian Nation" anyway?) entitled I think it is sick, wrong, and, yes, immoral, that any corporation would seek to <i>profit</i> off of the disabilities of child like Naomi by denying care and even sicker that the Commonwealth of the State of Pennsylvania sanctions it. Why does the state sanction it? The state sanctions it because children like Naomi are expensive and it saves the state money, and God forbid taxpayers might have to pay a few extra dollars and cents a year to see that children like Naomi and their families have all of the things they need to properly and sustainably care for them. Families categorically did NOT suffer these cruel games or deal with these dubious denials to this extent under the old state run Access system. Under the old system it was about need. It was about justice. It was about doing what is morally right and required (for the most part...the past is not nearly as rosy as we often like to believe. In this case, while imperfect, the old system was infinitely better than the current one.) Under the new system it is about profits for corporations and their shareholders and cutting taxes. It is about the Almighty Dollar, which, regardless of claims about our special status, our "City on a Hill" Christian heritage, our "American exceptionalism," is the true idol that this nation worships, judging not on what we say we believe, but on what we really do, and in some cases, fail to do. Not the God of Moses and Abraham, not Jesus Christ whose words about caring for the sick, the poor, the downtrodden, the sorrowful, the cast aside, the socially inconvenient, fill the New Testament. Let me say it again. The Almighty Dollar, the golden calf, is the idol worshiped by this nation. Those of us who are fortunate enough to come from large families willing to help and/or with significant financial resources of our own fare better than those of us who have neither. For those of who have neither, God help them, because those He made in His image...don't. Far too many American Christians are content to use their faith and His Word to simply prosecute their prejudices in Jesus' name rather than actually seeking to live according to His example and His message. And far too many American Christians are content to park themselves and their families in a pew every Sunday for an hour, or participate in a Bible study, or some other such visible expression of their piety and then do absolutely nothing to apply Christ's teachings in any meaningful way. Far too many Americans consider themselves good people if they avoid doing overtly destructive things. If they don't beat their spouses and their children, if they don't steal, if they don't use colorful language. Maybe we need to start considering that in order to be good people we need to do more than just passively not do bad things. Maybe in order to be justified in considering ourselves to be good people we need to actively do good things. Maybe not beating your wife doesn't make you a good person. Maybe it just makes you not a bad person. Maybe helping someone else's beaten wife is what makes you a good person, you see? The first one is relatively easy. The second one is relatively hard. <br />
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Yes, children like Naomi cost the state a lot of money. Children like Naomi also cost their families a lot of money. In may cases, in most cases, though thankfully not our case, children like Naomi cost their families money they do not have, and so they and their children do without things they need, like wheelchair vans, and medical equipment and supplies, and respite care, and they all to often end up in bankruptcy. Or they try to raise the money through fund raisers. Which is doable, except that on top of the crisis that our families live every day, the task is nearly insurmountable. Have you ever tried to raise hundreds of thousands of dollars? Because that's what it takes to retrofit a home for disability and acquire all of the equipment and services needed to care for a child like Naomi. Yes, disability is very expensive. By a rough calculation, our out of pocket expenses for Naomi are about to cross in to the well over $100,000 territory and she is not yet six years old. That's because there are many expenses that are covered by no one except the family. We've been working on acquiring a wheelchair van for the past month. (That's the other experience that has led me to finally write post.) The conversion to make a van wheelchair accessible is $25,000 on top of the cost of the van. A wheelchair van costs as much as a luxury car. We will at some point need to have a wheelchair lift or, more likely, an elevator, built in to our two story home, which is no where near an inexpensive proposition, or we will have to give up our home and move to a one story house. Even simple wooden ramps are expensive. Then add in handicapped accessible bathrooms, widened doorway and hallways, lifts or ceiling tracks to lift and move larger children and adults who cannot walk or assist those who are moving them from one position or piece of equipment to another. It all costs money and there is not much provided by any public or private agency. A little, but not much. The state does have a great loan program that is a lifesaver for families like ours. The Pennsylvania Assistive Technology Fund provides low (3-4%) cost loans for adaptive equipment, like vans and lifts, and home modifications. There is a cap on the loan size you can receive, which is tied to your income, and you must prove you have an income to qualify. The program is wonderful if you are employed and have decent credit. If not, well, you and your disabled loved one are out of luck. The application process is cumbersome. We've been working on acquiring this van for about a month. Which considering that it is a great loan rate and a state program is not too bad, but having to navigate these kinds of things is difficult for families like ours when we live every day in a state that most families only experience during times of crisis. Let me state that again too. Families with a disabled member live every day, every single day, in a state of crisis. Everything that has anything to do with disability costs twice as much and takes ten times as long. But yes, the truth is that children like Naomi are very expensive and there is little institutional help out there, and the help that is out there is cumbersome and time consuming at best, and cruel and profit hungry at the worst. <br />
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If at this point you are thinking, see, government is the problem, not the solution, then here's my other truth of the day. The truth is that government provides a lot more services and a lot more help, a lot more reliably, than pretty much any private organization. The truth is that most people in the communities of people like Naomi have no interest in providing any real, tangible assistance to families like ours struggling to care for our children like Naomi every day. Ask your self, how many times have you mowed the lawn of, shoveled the sidewalk of, brought a meal to, dropped off a gift certificate for, folded the laundry of, scrubbed the toilet of, written a kind note to, sent a comforting gift to, dropped $20 in a donation can for a family like ours living in crisis every day struggling to care for a child like Naomi? Never? If your answer is never then you are a pretty typical American citizen. If your answer is Never, but you support the creation and maintenance of government programs to provide real, meaningful routine assistance to families like ours, are willing to pay the taxes required to do so, and vote for candidates who prioritize service to those with extraordinary needs, then I let you off the hook. If your answer is Never, and you claim that the government should not provide those services, but instead private charities, churches and communities should and yet you do nothing yourself to see that they are provided, then you are not off the hook. You cannot say that local, state, and federal government should not be involved in providing social services and medical care for people in need, for people like Naomi, and then also not spend a meaningful amount of your time and resources, whether they be skills or money, providing those services for people in your community, both friend and stranger alike. You cannot. You cannot say that churches, extended families, communities and private charities should provide needed care and assistance if you do not participate in providing that assistance. You cannot. If you do, then my question to you is, what would you have us do? Maybe you never realized how much need there really is and how much a few hours of your time a few times a year can make a difference for a family struggling to make it through every day. Ignorance is only an excuse as long as you remain ignorant. There is no excuse for willful ignorance. You are no longer ignorant if you are reading this post. You must choose one or the other. You must be willing to invest a meaningful amount of your time, skills and/or financial resources in providing aid to families like ours, or you most be willing to pay the required taxes to have government do it for you. Well, you can refuse both, but if you do you cannot claim to be a moral person, and you certainly cannot claim to be a Godly person. There are many truths, like these ones, that are ugly and unpleasant, but that does not mean that they should not be confronted. That does not mean that those of us who have learned them should keep them quiet and hidden out of fear of offending someone. I will not hide the truths I have learned through my life with Naomi. Disability and the suffering that goes with it teach many hard lessons. These truths are just a few of them.<br />
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How can you minister to a family like ours? You can provide your skills and services...do their taxes if you are an accountant, go to their home to cut hair if you are a hairdresser if it is difficult for them do get out, cut their lawn, shovel their sidewalk. Drop off a meal or a loaf of banana bread. Anonymously mail a gift certificate for a take out place. Fold their laundry, scrub their toilets, clean their cabinets once a year. Understand that it's hard for them to get out and stop by with a coffee and snack and some good conversation. Include a special note or letter in a card at Christmas letting them know that you think of them and keep them in your prayers. Stop saying people , things and situations are "retards" or "retarded" or "crazy." Stop pounding your hand against your chest and making groaning noises when you want to express how dumb you have been about something. Stop giving people with unruly children ugly looks. You don't know why their child is acting out. Maybe the child is a "spoiled brat" or maybe the child has severe autism or a neurological disability. Disability isn't always as obvious as a child like Naomi in a wheelchair. Send them a message on facebook letting them know you care. Understand that when they only accept your social invitations one in ten times and only return the favor 1 in 100 times its not because they are rude and have no manners, but because it's all the can do and keep inviting them. Stop pretending to yourself that we don't exist because it is easier for you not to think about us. Donate to our charities and to charities that help families like ours. Call up and ask them what you can do for them and don't take "Nothing" for answer. Vote for candidates who are willing and eager to sponsor and vote for legislation that helps children like ours. Tell your elected representatives that our families and their needs matter. Do any one of those things and do them regularly. Do things I haven't listed here but that would be equally appreciated and helpful. Do something. Recognize the truths I am writing today and do something about it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZwXQnHp3nFgj6dlUT9BgRuUjPZKmm-r514fIHBBg-BVMR55D_nRJaClxMWt1NfCMQzVA5J01JiNnbY9V5kPPsDGu7KYDyps_Q4IJbkSaXfq2_5fIQtdqksSoPiIM-j2KBTgWKLYL0_01v/s1600/031.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZwXQnHp3nFgj6dlUT9BgRuUjPZKmm-r514fIHBBg-BVMR55D_nRJaClxMWt1NfCMQzVA5J01JiNnbY9V5kPPsDGu7KYDyps_Q4IJbkSaXfq2_5fIQtdqksSoPiIM-j2KBTgWKLYL0_01v/s1600/031.JPG" height="320" width="213" /></a> Naomi counts. She matters. So do all of the children like her. Her needs are immense. Their needs are immense. We want to care for our children well. We can't do it alone. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkSLEwLgMsFr9guKaTO1hT_E8ptmtEi_FEMe61BH1muDQmhKLJ38esGC_uLZY7hBVKzOj9cHxFXvDaxixJTJSxJ-TM1daQnOP65B43paP3XVP0b9WNpIR_2Q8yvaSf3RoxBaL_bnsA8bUe/s1600/001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkSLEwLgMsFr9guKaTO1hT_E8ptmtEi_FEMe61BH1muDQmhKLJ38esGC_uLZY7hBVKzOj9cHxFXvDaxixJTJSxJ-TM1daQnOP65B43paP3XVP0b9WNpIR_2Q8yvaSf3RoxBaL_bnsA8bUe/s1600/001.JPG" height="425" width="640" /></a><br />
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com5tag:blogger.com,1999:blog-8265861613312682909.post-11554738402207135632014-03-23T18:52:00.000-07:002014-03-25T13:55:22.850-07:00Sister...ugh.<div class="separator" style="clear: both; text-align: center;">
Here is the Most Annoying Person in the World...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1b8RasKrvkiMTjIyuWLh_jBsdulv_u1F5JbbqzpbxsK6y4l2CIzpjDGSoiQBh3f4pBCVJtjpYM4QWTYfS3CHwGy3vIGbKse_EItz4uyiEIoB57p7rGRpWTA5J3dnmvXU8ClD6PvX98v9D/s1600/080.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1b8RasKrvkiMTjIyuWLh_jBsdulv_u1F5JbbqzpbxsK6y4l2CIzpjDGSoiQBh3f4pBCVJtjpYM4QWTYfS3CHwGy3vIGbKse_EItz4uyiEIoB57p7rGRpWTA5J3dnmvXU8ClD6PvX98v9D/s1600/080.JPG" height="213" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPoC0kgRhjmDf0rmxZ5g3x8-t-enrwnbRqMZBTjGkV4OykjSULUrHloh7KWrfVRY_8Y_iKCbB_8HKojsyuEknVdp2c9secPEldLx70fVwlHtDyPlP4YL-4CWs4pHkKCtHwtZ5PIHJICLIZ/s1600/012.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPoC0kgRhjmDf0rmxZ5g3x8-t-enrwnbRqMZBTjGkV4OykjSULUrHloh7KWrfVRY_8Y_iKCbB_8HKojsyuEknVdp2c9secPEldLx70fVwlHtDyPlP4YL-4CWs4pHkKCtHwtZ5PIHJICLIZ/s1600/012.JPG" height="213" width="320" /></a></div>
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according to Naomi, at least. Mommy and Daddy find her to be quite charming. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh55tdj6Y551MY9Cj75qjWca-xyW7Ph2eq8hFl5N90KsneEbjHU2zJZMaCTbMijSmmUMMGZicKTxM9RzBNWnxJS2Zp1OutO6uI11P50F2nMTUG9KeDsW-738-fMSA4RdHWkBEfDSXACPmlY/s1600/021.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh55tdj6Y551MY9Cj75qjWca-xyW7Ph2eq8hFl5N90KsneEbjHU2zJZMaCTbMijSmmUMMGZicKTxM9RzBNWnxJS2Zp1OutO6uI11P50F2nMTUG9KeDsW-738-fMSA4RdHWkBEfDSXACPmlY/s1600/021.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Here Naomi's Most Annoying Person in the World is demonstrating where her ears are. </span></td></tr>
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Here is Most Fascinating Person in the World...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG7lEgYNUlThuuvUlkyqdWM0Y4zLqK4Ui10Y0_QMk_ErttSA01pTcxvGFwfUZa1jlFGLt6P4zSNn-MW0Rwer4BF_1um35BMvf2HJUa53HIel10RVrphPQhDknV2QOwtGnTE3b-OBzmKiIZ/s1600/035.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG7lEgYNUlThuuvUlkyqdWM0Y4zLqK4Ui10Y0_QMk_ErttSA01pTcxvGFwfUZa1jlFGLt6P4zSNn-MW0Rwer4BF_1um35BMvf2HJUa53HIel10RVrphPQhDknV2QOwtGnTE3b-OBzmKiIZ/s1600/035.JPG" height="213" width="320" /></a></div>
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...according to Lydia.</div>
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This is how Naomi feels about Lydia's fascination with her:</div>
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The result of Lydia's fascination with Naomi is that Naomi has to endure Lydia wanting to do everything she is doing and generally be up in her business all the time. </div>
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For example, this:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWs5fhntwPIGqllPUkO8fR5SDAA1kPilSJOxreKCxqotctjAFYDKTWxIZIL8p2c0NR7NtAg3D3TsJYjFGlnTev2t9wpurnNYzsV6oXe7j1VoFGxBJGgkleynzUZaFu_Ny03hCnevP8xHLZ/s1600/019.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWs5fhntwPIGqllPUkO8fR5SDAA1kPilSJOxreKCxqotctjAFYDKTWxIZIL8p2c0NR7NtAg3D3TsJYjFGlnTev2t9wpurnNYzsV6oXe7j1VoFGxBJGgkleynzUZaFu_Ny03hCnevP8xHLZ/s1600/019.JPG" height="320" width="240" /></a></div>
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And this:</div>
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<object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://i1.ytimg.com/vi/C_xEG-tS4Hw/0.jpg" height="266" width="320"><param name="movie" value="https://www.youtube.com/v/C_xEG-tS4Hw?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="https://www.youtube.com/v/C_xEG-tS4Hw?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object><br />
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And this:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIM5YD8MryFWdrHVy-u6V2jqw1mO-nNDuWRB5AgY-TfCG7Cb3JP1HBnT_XrH6H3o86MwwP70GugLScva1AzPidyEJteJzzNq_fWdttzf7dCJN6FfXZYD_UY6-TTFD9cAo7XkxxOGJD3TiI/s1600/050.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIM5YD8MryFWdrHVy-u6V2jqw1mO-nNDuWRB5AgY-TfCG7Cb3JP1HBnT_XrH6H3o86MwwP70GugLScva1AzPidyEJteJzzNq_fWdttzf7dCJN6FfXZYD_UY6-TTFD9cAo7XkxxOGJD3TiI/s1600/050.JPG" height="320" width="213" /></a></div>
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Here Naomi is trying to play with her ipad at her new desk she got for Christmas:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFB45B2VqLvZrRMf6JgnVdJAGunaEeKpeQThY4j4XSWeDs2NJ-Fh0MtD3bheSAwdfKL4qKBx3QEL3rhmN0CSoc2ziqy5tZhik85NAm7Irv7rBnB7YoZ9gwReRug0S731wgVZ-66pWzPnL3/s1600/090.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFB45B2VqLvZrRMf6JgnVdJAGunaEeKpeQThY4j4XSWeDs2NJ-Fh0MtD3bheSAwdfKL4qKBx3QEL3rhmN0CSoc2ziqy5tZhik85NAm7Irv7rBnB7YoZ9gwReRug0S731wgVZ-66pWzPnL3/s1600/090.JPG" height="213" width="320" /></a></div>
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</div>
Lydia is invasive, at best.<br />
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</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSweelbwqKW8r7BcUOJ6aXezmj8-BavTfsOi1WOwyRtrNEDKWAP6d2rFsYiAaLKdGqQX51UlXz59tQIF8aetEV9fkV_M6bzUsIIINrRJEZI642Et5khdKBzUk-8xR0TCxhssu-HnbDk4nE/s1600/100.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSweelbwqKW8r7BcUOJ6aXezmj8-BavTfsOi1WOwyRtrNEDKWAP6d2rFsYiAaLKdGqQX51UlXz59tQIF8aetEV9fkV_M6bzUsIIINrRJEZI642Et5khdKBzUk-8xR0TCxhssu-HnbDk4nE/s1600/100.JPG" height="213" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGcPkdIhSJPsKCzTcWfmwfpJZVVAndRXVIipH2rXN8qXZ_XhYN4uhyphenhyphensD8dtRsOXEbK9WoVxDGePh8uETLOjH58pvTLQqWE4r2yUw58CRyzrCuTYzixXKRPx_vQD7jybFu5ZwPFhRJQ9kzx/s1600/107.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGcPkdIhSJPsKCzTcWfmwfpJZVVAndRXVIipH2rXN8qXZ_XhYN4uhyphenhyphensD8dtRsOXEbK9WoVxDGePh8uETLOjH58pvTLQqWE4r2yUw58CRyzrCuTYzixXKRPx_vQD7jybFu5ZwPFhRJQ9kzx/s1600/107.JPG" height="213" width="320" /></a></div>
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Sometimes Naomi is tolerant. Other times not so much. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjri36130wI2r4e_82GZ9COVd4HttrVjyiJYboOdVnfoHPdK9c12Cm6MQNYHGshkupiHFFLBOoRw-42Prk_SVDHver7P8MBF599eRXR1wSe18H_Vt0h6twUBQUsNdaoerQoPinfX1Fh-Qb8/s1600/103.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjri36130wI2r4e_82GZ9COVd4HttrVjyiJYboOdVnfoHPdK9c12Cm6MQNYHGshkupiHFFLBOoRw-42Prk_SVDHver7P8MBF599eRXR1wSe18H_Vt0h6twUBQUsNdaoerQoPinfX1Fh-Qb8/s1600/103.JPG" height="213" width="320" /></a></div>
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A pretty typical interaction is show in the photo montage below.</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvaqgc7Xaw_g_ku1tyXCDMCqxw91vUVDjnFjyzGGwcHJ37LUVNBLfkESbzHDSCQfZXzdslFkSmu-ZUTnCkzaTlpYXQS36Tssym50GC8KM9JN0ZErQkPb0TIo-mEU4RPph8MkrZmp8_XIXe/s1600/050.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvaqgc7Xaw_g_ku1tyXCDMCqxw91vUVDjnFjyzGGwcHJ37LUVNBLfkESbzHDSCQfZXzdslFkSmu-ZUTnCkzaTlpYXQS36Tssym50GC8KM9JN0ZErQkPb0TIo-mEU4RPph8MkrZmp8_XIXe/s1600/050.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Remember Naomi puts her face down on things she likes. </td></tr>
</tbody></table>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha9QRxdlTWFxSo0Mxvne3Zu7BkXvL-SC8G_hg0_ZpfQizFERT-QFhy4S1vJxtnVdH3CDunBUGYZX5O6AAsigI4yKj0BP-QBubxga9H1M5P5FhvQqZPEchFVmIsJTLXjhf9y5HmyzgFvvb1/s1600/053.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha9QRxdlTWFxSo0Mxvne3Zu7BkXvL-SC8G_hg0_ZpfQizFERT-QFhy4S1vJxtnVdH3CDunBUGYZX5O6AAsigI4yKj0BP-QBubxga9H1M5P5FhvQqZPEchFVmIsJTLXjhf9y5HmyzgFvvb1/s1600/053.JPG" height="213" width="320" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCjJ7NdPaAdvaUaGqCXEsNtKf5HoGM6RJExoDyQIXZx1oL6hVt5ggily6yLgx5_hahKk2m6LCA4M4XMHYrBU7KLKxZDt5aJKlAFx0Kbff3Iml38t90Wa9444cdFUA_Cv8huUkZDdCukSiL/s1600/054.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCjJ7NdPaAdvaUaGqCXEsNtKf5HoGM6RJExoDyQIXZx1oL6hVt5ggily6yLgx5_hahKk2m6LCA4M4XMHYrBU7KLKxZDt5aJKlAFx0Kbff3Iml38t90Wa9444cdFUA_Cv8huUkZDdCukSiL/s1600/054.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia "helping."</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ1g2FnwXH9OjAVbeknze41F-YJ_WrHThsDIg_Q3cZMDMqH2FF5Zwz2mwCKpTSZKCDDgYl-UMx56u7Qj6XRBwTIzUsHn7Nf5gasDeL_X_rZDaxj1p5XvuJ8FcHrqRPgS-U-HEbBTNJnRV5/s1600/055.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ1g2FnwXH9OjAVbeknze41F-YJ_WrHThsDIg_Q3cZMDMqH2FF5Zwz2mwCKpTSZKCDDgYl-UMx56u7Qj6XRBwTIzUsHn7Nf5gasDeL_X_rZDaxj1p5XvuJ8FcHrqRPgS-U-HEbBTNJnRV5/s1600/055.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia is starting to get frustrated with Naomi having her head on the ipad so much. </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ueoO3bz3Vv8roHjNaepBg3jmOXTjezCDfYj_LEk32LZK1jeJlwgUjpErasiZbEBY4urnC18_jxOgtnwIO7gPXTWGqbX0hREI1su4pY947AkxVwnZFhukxFnzin5A_JrfoX5fJKf-6OMm/s1600/058.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ueoO3bz3Vv8roHjNaepBg3jmOXTjezCDfYj_LEk32LZK1jeJlwgUjpErasiZbEBY4urnC18_jxOgtnwIO7gPXTWGqbX0hREI1su4pY947AkxVwnZFhukxFnzin5A_JrfoX5fJKf-6OMm/s1600/058.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So she decidesto use Naomi's hair to pull her head off of the ipad. </td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheibSsJ-kaxYJTWfxCDGfGWEEFpx1Sh1glFjLv_TJhs4O21-Zr8XhhCEzhINeeoEph6gL2xYaq6IN07eT05dO2oWS9E-MznmfB2BUWOF59S9Gn8tI7JaN6RHRTvgE0_1VhAC031UgGxTny/s1600/057.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheibSsJ-kaxYJTWfxCDGfGWEEFpx1Sh1glFjLv_TJhs4O21-Zr8XhhCEzhINeeoEph6gL2xYaq6IN07eT05dO2oWS9E-MznmfB2BUWOF59S9Gn8tI7JaN6RHRTvgE0_1VhAC031UgGxTny/s1600/057.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia responds to being reprimanded by throwing herself on the floor in a very fake tantrum.<br />
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</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRUg2HbNM8yoGmdkhc6PWnYgtubnzv6qbXEayTivReYWohbx843SVj1veUFX4nuTj1wWsDzdx5-0GdgfBxLFbNJ-cDlsasut5Q13nlbvATFuE36cNiPjw1ZgexBQxANy15Rd8WQ6Gb937v/s1600/045.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRUg2HbNM8yoGmdkhc6PWnYgtubnzv6qbXEayTivReYWohbx843SVj1veUFX4nuTj1wWsDzdx5-0GdgfBxLFbNJ-cDlsasut5Q13nlbvATFuE36cNiPjw1ZgexBQxANy15Rd8WQ6Gb937v/s1600/045.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">She quickly recovers, and has some more lunch.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGNJjKGWD-ofOkqDAC_b9a9hikkSSmLR06A5xNnE-tlKdNMTPUWvtuEZagixWfzWBcBj_OxYIJu-oP95NY-Q_06Cw49kk81XvHgqDK_H0KN5JeRg7FG1vbrG-shwdGDnq3Ssv8_ozKcWpf/s1600/060.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGNJjKGWD-ofOkqDAC_b9a9hikkSSmLR06A5xNnE-tlKdNMTPUWvtuEZagixWfzWBcBj_OxYIJu-oP95NY-Q_06Cw49kk81XvHgqDK_H0KN5JeRg7FG1vbrG-shwdGDnq3Ssv8_ozKcWpf/s1600/060.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And then goes right back to her old tricks. though without pulling this time. Mostly just less than gentle pushing. </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNxfsAoSw76NkfQ-mCkp3Dd1uLGxJziflznFS85TKAW_txNeXAYT__8azPld26qaIzgwgGiDMLCjDbBLJHa8KwTAOig3BqyQiHwY70iewjHJ8CL8M1Mt9uEGX4UJcB9HzZnKQ06F9bkImZ/s1600/061.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNxfsAoSw76NkfQ-mCkp3Dd1uLGxJziflznFS85TKAW_txNeXAYT__8azPld26qaIzgwgGiDMLCjDbBLJHa8KwTAOig3BqyQiHwY70iewjHJ8CL8M1Mt9uEGX4UJcB9HzZnKQ06F9bkImZ/s1600/061.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and more unwelcome "helping."</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLMgSIsVrMoh8Rvw7y-V7gPYIYNMjlD6RYC2nYTrDbS1dwP8-24zXCYOuPi4QZsmWXBOzvLVaYq0vu6XlR1xl3JV4puZOJPBdEi8bxUaHmNOg8E_wmxPa7kjO8-MHWxFZTZtFZNxDzJR4q/s1600/062.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLMgSIsVrMoh8Rvw7y-V7gPYIYNMjlD6RYC2nYTrDbS1dwP8-24zXCYOuPi4QZsmWXBOzvLVaYq0vu6XlR1xl3JV4puZOJPBdEi8bxUaHmNOg8E_wmxPa7kjO8-MHWxFZTZtFZNxDzJR4q/s1600/062.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She briefly follows the direction to "Just look."</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhCa4SDxqBeIQYHhdH5Qoxfc-Emi5ZbrTBznBlw6NsdqYkU6hBGfOZY9veCbkr6_tmrJQhFzFR7ZFPdyaGckwFcvIsO_XcCjcu7D38LHtmzZzaYBrVoxsYsqThBHfIjMcdVNi-GWf2KGMf/s1600/063.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhCa4SDxqBeIQYHhdH5Qoxfc-Emi5ZbrTBznBlw6NsdqYkU6hBGfOZY9veCbkr6_tmrJQhFzFR7ZFPdyaGckwFcvIsO_XcCjcu7D38LHtmzZzaYBrVoxsYsqThBHfIjMcdVNi-GWf2KGMf/s1600/063.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Very briefly</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTs1XscyeY176cHKcN579A3LUolS2HioEsp4nG8L31VDZSY2MzZXdnnZpFghm0WrQEfE2EV4_0meWYbAKVZweCopKBmesLfibfAj9-KxpXsZqjyEd5yY3R_OxL3taU8fIQtwSu7P3f5k-S/s1600/065.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTs1XscyeY176cHKcN579A3LUolS2HioEsp4nG8L31VDZSY2MzZXdnnZpFghm0WrQEfE2EV4_0meWYbAKVZweCopKBmesLfibfAj9-KxpXsZqjyEd5yY3R_OxL3taU8fIQtwSu7P3f5k-S/s1600/065.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi silently pleads for relief.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEImHXe4y8kE7jytO1LiSGdyQS5vBg2YJBY9udZp7YbqnEHncUPtYpO8mKwoekqV3FjzX7vLVx9GnF1QIUGkVKvo_qRgt4JGwQKnmgx_3bMECQHl58XcZHU7cqa7P_Rovi_yjOJpvF4Ajr/s1600/073.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEImHXe4y8kE7jytO1LiSGdyQS5vBg2YJBY9udZp7YbqnEHncUPtYpO8mKwoekqV3FjzX7vLVx9GnF1QIUGkVKvo_qRgt4JGwQKnmgx_3bMECQHl58XcZHU7cqa7P_Rovi_yjOJpvF4Ajr/s1600/073.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia trying to see around Naomi's head.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEjSXfMo5MwBFYfPfyKzl49nlV170iOJd-mD9lIZnSg0Dg8lhx_XVUWvmIp7XYxDxLt2uPYMETZbTX-e7mX6FeyUN5fDfhhkDHDmb0MQbRIJ16tlggp9TA8xytSY0Za-PjULUkdMzvlCp1/s1600/077.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEjSXfMo5MwBFYfPfyKzl49nlV170iOJd-mD9lIZnSg0Dg8lhx_XVUWvmIp7XYxDxLt2uPYMETZbTX-e7mX6FeyUN5fDfhhkDHDmb0MQbRIJ16tlggp9TA8xytSY0Za-PjULUkdMzvlCp1/s1600/077.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm fairly certain Naomi was picking on Lydia at this point.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk4FAx3dhl6YLBiOUjw1HQQc0mgdJwpZI0UwiEFvRkCnZWttZ6WeXjJsZSSBPT-47wiMZjBeagET3H_rPoqqo1vPNf9Wd-Z8ujJJI8BKS9y1h3sxOHmC6ID7xOU-LXGFVU2do7mrkG7jbd/s1600/079.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk4FAx3dhl6YLBiOUjw1HQQc0mgdJwpZI0UwiEFvRkCnZWttZ6WeXjJsZSSBPT-47wiMZjBeagET3H_rPoqqo1vPNf9Wd-Z8ujJJI8BKS9y1h3sxOHmC6ID7xOU-LXGFVU2do7mrkG7jbd/s1600/079.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She IS exceedingly pleased with herself. </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_6myq0c_9xzKfQOLd89evwxPqEhKRmzHlfzbjO86VjuDlX1QMtAHV01XYq0V8WPA-8KL92kxkOHLPiYPmqdQK7wu8pTr9mGFlWB3Vh64xqnBQupYtohixlSKt7pJufHOscxJ6bfU-vNvq/s1600/080.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_6myq0c_9xzKfQOLd89evwxPqEhKRmzHlfzbjO86VjuDlX1QMtAHV01XYq0V8WPA-8KL92kxkOHLPiYPmqdQK7wu8pTr9mGFlWB3Vh64xqnBQupYtohixlSKt7pJufHOscxJ6bfU-vNvq/s1600/080.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Until Lydia retaliates...</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN3tCxb7HLNyBQyb6sXSWeKmq11tlrHLnys3_JmCMMOjWCVrQ8k22VZ1Uy9CAUCjfIXdDc-72AVMnWW5R-jhagXXvYKqZBwoxIrRGStj9NR2GWLe4-I2wMA6v-ijmpCPoYcbToiWpOq86X/s1600/081.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN3tCxb7HLNyBQyb6sXSWeKmq11tlrHLnys3_JmCMMOjWCVrQ8k22VZ1Uy9CAUCjfIXdDc-72AVMnWW5R-jhagXXvYKqZBwoxIrRGStj9NR2GWLe4-I2wMA6v-ijmpCPoYcbToiWpOq86X/s1600/081.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and steals the ipad away. Of course Mommy took it and gave it back to Naomi. Repeat the tantrum picture from above. </td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheySX1UK9PRhbzot-YX-Vvf7VpDUkEPOl2ybN8l9cpuC3LEpDoFAB9Hji0WWIshQZDEr_xYHnUGzy5XNSHz37PAIIVxGgqo0lmHYI4ElaVB928Ag5BYlQJPgRfAxULvaLqj9NjRA9d7MaX/s1600/084.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheySX1UK9PRhbzot-YX-Vvf7VpDUkEPOl2ybN8l9cpuC3LEpDoFAB9Hji0WWIshQZDEr_xYHnUGzy5XNSHz37PAIIVxGgqo0lmHYI4ElaVB928Ag5BYlQJPgRfAxULvaLqj9NjRA9d7MaX/s1600/084.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi is smug when the ipad is restored to her. Lydia is chastened. </td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv7naKPyTv7-2nNZqCIt2zKWLy9ylPos9LAahyWtkfIa5zabS0gUba3iHMUTOaHNMMAlb9qqGrMm8HWMcMl1ldLOFHM7wwkr8z-O74PvIeHKOPZ_trACwSH4OecjPu7lSrI4OGxOXxGNqh/s1600/086.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv7naKPyTv7-2nNZqCIt2zKWLy9ylPos9LAahyWtkfIa5zabS0gUba3iHMUTOaHNMMAlb9qqGrMm8HWMcMl1ldLOFHM7wwkr8z-O74PvIeHKOPZ_trACwSH4OecjPu7lSrI4OGxOXxGNqh/s1600/086.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finally they play nicely together. </td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
Lydia generally wants everything that is Naomi's. Not only her ipad, and whatever toys she is currently play with, but also her feeding syringes, and of course her bubbas. </div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj50b2qEp0WJiC8HZ_0MEC67xXEKmStexOV-6gSpG2Z9yb4j_dv7psESmtUKpKUkUepGajZVT9H-tqSedCdhW3cCOGTpIL3GKm7w0hJOC0HysOjFrwltLPZD7SgbSjwtJAYVuHkovqce3bR/s1600/048.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj50b2qEp0WJiC8HZ_0MEC67xXEKmStexOV-6gSpG2Z9yb4j_dv7psESmtUKpKUkUepGajZVT9H-tqSedCdhW3cCOGTpIL3GKm7w0hJOC0HysOjFrwltLPZD7SgbSjwtJAYVuHkovqce3bR/s1600/048.JPG" height="213" width="320" /></a><br />
She doesn't do anything with them, other than carry them around like a prize.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVsNjvkCNiN9-PwRwzPbI5XAAdecU4ctnn61rPtvcPWSwjDg99m3HnxlqJYQ2zuRYVkm-YU4DhStA9j-2MYiMJL-wQEqzFZkgQ6v4IZlOcRVeI6tfhAjgeYLb6WgopkEBNuezU6EaVL8-P/s1600/051.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVsNjvkCNiN9-PwRwzPbI5XAAdecU4ctnn61rPtvcPWSwjDg99m3HnxlqJYQ2zuRYVkm-YU4DhStA9j-2MYiMJL-wQEqzFZkgQ6v4IZlOcRVeI6tfhAjgeYLb6WgopkEBNuezU6EaVL8-P/s1600/051.JPG" height="213" width="320" /></a><br />
<br />
<br />
Interestingly, Naomi has been interested in rolling on to her belly again. She's so big she has trouble getting her arm out once she gets over, but with a little help she likes to hang out there for a while, rather proud of herself. We call this "Bear on a belly!", which Naomi loves. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyg5u4vp6AuNKbwwnucxtNJGH8HllZWoBZBpJ15OXQ8UHZYttbzr7e_kZV7lX1xIdxl7xjKOh2FSJOcgpnUgrh7526MC43zEHZB04oswfc42Y4oudUYuPNzPw8oq5amQDiRB_eG8glZgum/s1600/128.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyg5u4vp6AuNKbwwnucxtNJGH8HllZWoBZBpJ15OXQ8UHZYttbzr7e_kZV7lX1xIdxl7xjKOh2FSJOcgpnUgrh7526MC43zEHZB04oswfc42Y4oudUYuPNzPw8oq5amQDiRB_eG8glZgum/s1600/128.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The ever present Chronicus Pesticus hovers in the background...</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjryB9cvlkC0r1vTWxdX9OepINQw5kFjSM7JwBTqoejC8HvZAb-tN-xG5f7A3fVvTIxzIT_WcUgR7HkJLlFUqQ5ijkQ80qR0WM93cX6bUTDpFQ_agpAqvf7KM-kRGIwDXivgOK1lzVCJugV/s1600/130.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjryB9cvlkC0r1vTWxdX9OepINQw5kFjSM7JwBTqoejC8HvZAb-tN-xG5f7A3fVvTIxzIT_WcUgR7HkJLlFUqQ5ijkQ80qR0WM93cX6bUTDpFQ_agpAqvf7KM-kRGIwDXivgOK1lzVCJugV/s1600/130.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">ready to pounce...</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdACaVYnzIsRg6JRwJX-vQ5kPva5i9dau1QP3nB3j4zvPa8tm75FAHUV4v-Re6AYPlRuFgQoOHt9v9FqL6jaPhQKLan_LcRkEotwiQ61QzMtZFIhRPrn6ZxMeQ_iICeqkK1rAYfcAz7OFG/s1600/137.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdACaVYnzIsRg6JRwJX-vQ5kPva5i9dau1QP3nB3j4zvPa8tm75FAHUV4v-Re6AYPlRuFgQoOHt9v9FqL6jaPhQKLan_LcRkEotwiQ61QzMtZFIhRPrn6ZxMeQ_iICeqkK1rAYfcAz7OFG/s1600/137.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and give Naomi an extended hug. She really does love Naomi. </td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioSr-tQbanTYmDLRY-SjxCVAUNavz00P1Lr_Jg0QXjGd9K5tSjIU5MibldLoWTYEM6acjkkyxHyZE7Ws9RKSEPhyhPo_P_QgPdJAMT5j5Zy6BJ1OrGjrCXm_e0u1eBpptYP9YqwwHAn2KQ/s1600/002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioSr-tQbanTYmDLRY-SjxCVAUNavz00P1Lr_Jg0QXjGd9K5tSjIU5MibldLoWTYEM6acjkkyxHyZE7Ws9RKSEPhyhPo_P_QgPdJAMT5j5Zy6BJ1OrGjrCXm_e0u1eBpptYP9YqwwHAn2KQ/s1600/002.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">More Bear on a Belly.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSTAcinccIrrMgz_rX08UqC8pK2-xmJff8-AQrLt96p-OrhtHrTm5JJO9-ibBVEVinsdMJegqQGndq0l4EZK1hAoPpeoN2hK6PtUriqpqXFkKelGzaWCfDQJbJBlGFqt6pV1Sjv-2ATA_k/s1600/030.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSTAcinccIrrMgz_rX08UqC8pK2-xmJff8-AQrLt96p-OrhtHrTm5JJO9-ibBVEVinsdMJegqQGndq0l4EZK1hAoPpeoN2hK6PtUriqpqXFkKelGzaWCfDQJbJBlGFqt6pV1Sjv-2ATA_k/s1600/030.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">When she is ready, she rolls quite efficiently on to her back. She hasn't forgotten that. </td></tr>
</tbody></table>
Since Naomi has been more interested in being on her belly recently, we have also been practicing balancing on her hands and knees. It has been years since she was tolerant of practicing this with me. And we have also been practicing 'tuck and sit', or getting out of being on her hands and knees by sitting back and up into a sitting position. She used to be able to do that independently about 10% of the time, and with some degree of assistance most of the time. For a long, long time she would just lower herself on to her belly and roll over, while screaming. but she has been tolerating practicing tuck and sit too. It is nice. I like being able to work with her physical therapy exercises again. <br />
<div>
<br />
<div>
<br />
Naomi has also been up to her occasional afternoon school naps. <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUERlcp5HnA7GJKaAGyq4zp-QdYc0zleZzIrzaHRh948QjBmsFfAwtsNPoGQdXUJ6suMON2y_M9NXL0L6ULhbYmt23V8fKlEhiNExcnGftnigx_jmGQMGRUpUQHWmWUET0uV-1-s0BNY-U/s1600/001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUERlcp5HnA7GJKaAGyq4zp-QdYc0zleZzIrzaHRh948QjBmsFfAwtsNPoGQdXUJ6suMON2y_M9NXL0L6ULhbYmt23V8fKlEhiNExcnGftnigx_jmGQMGRUpUQHWmWUET0uV-1-s0BNY-U/s1600/001.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was a pajama day on one of many, many more cancelled days of school. </td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr4UdrAWwPbzRfXkZDBPIb3crvuJLciedJ-TTVrb0Gix9_5emLUfKmoMr4q2qJeb2I6BABbxXs-jMTAqdlVAedYsDNeuQ7KvbLXCwAwzYZ93c1aWmJNQhDysbhFhHvoin6t_N7mJP-Vlhf/s1600/039.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr4UdrAWwPbzRfXkZDBPIb3crvuJLciedJ-TTVrb0Gix9_5emLUfKmoMr4q2qJeb2I6BABbxXs-jMTAqdlVAedYsDNeuQ7KvbLXCwAwzYZ93c1aWmJNQhDysbhFhHvoin6t_N7mJP-Vlhf/s1600/039.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">This is why school was cancelled so much. </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7GjEXZEKRKWoAU39lsI9j8hn87QyIYfr3xFCcaiyi6JDS-wHChH-4IpsrbrAhmcyl9L1Vrrv1ypPD0NlCjMsR4G4y_yixJwIosQAYpeatsItOrXEw94XuTsl_7fyvwL6GwdxcWZCSzJBb/s1600/125.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7GjEXZEKRKWoAU39lsI9j8hn87QyIYfr3xFCcaiyi6JDS-wHChH-4IpsrbrAhmcyl9L1Vrrv1ypPD0NlCjMsR4G4y_yixJwIosQAYpeatsItOrXEw94XuTsl_7fyvwL6GwdxcWZCSzJBb/s1600/125.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another afternoon nap, this one after a school day. I have no idea how that is comfortable.<br />
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<br />
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</tbody></table>
And of course she has been engaging in her other usual activities. <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3RZoD-MyXe9JKJm1Nz6wTuhznqZZNlI-_CGgIElYgKqeanZNG8SSogRE6BpNY9PKTybbOXSoOqtSz6zJWT1XL-YXejLZaJQLyKTtq2OiFYSVeHcDby1h6EQEJYG9yVQSdnegHThroUNTk/s1600/069.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3RZoD-MyXe9JKJm1Nz6wTuhznqZZNlI-_CGgIElYgKqeanZNG8SSogRE6BpNY9PKTybbOXSoOqtSz6zJWT1XL-YXejLZaJQLyKTtq2OiFYSVeHcDby1h6EQEJYG9yVQSdnegHThroUNTk/s1600/069.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggling with her Kitty Marie while listening to her songs and looking out the window. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Snuggling with Mommy and watching the Wonder Pets before bed.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Having a Mommy and Bear Snuggle Day on a weekend. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Having Mommy and Bear Snuggle Day invaded by Lydia, who for some reason has food on her face again. She usually is clean. Really. </td></tr>
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In other big news, Naomi was a really, really, really good girl at school last week. She did all of her work and had no tantrums and got all of her stickers on her snowman.</div>
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So she got to pick a prize out of the prize box. She reached in and pulled out this necklace. She wore it home from school. She is <i>extremely</i> proud of her necklace and smiles like the butcher's dog anytime we put it on her or tell anyone about how she got it. Of course she was very pleased to model it for the camera too. </div>
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Lastly, Spring is finally here! We love Spring around here. We are still waiting for the telltale changes in the weather, though. <br />
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-70791493498306993322014-02-17T15:00:00.002-08:002014-02-17T17:30:14.161-08:00Naomi's First Summer<div class="separator" style="clear: both; text-align: left;">
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I've been told repeatedly that "people" want to know Naomi's story from the beginning, so this is the next installment of Naomi's story prior to the start of this blog in August, 2011. It covers her 7th, 8th and 9th months, in other words, her first summer. It was 2009.</div>
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Here is Naomi in a dress and bonnet I made for her seven month old pictures. I had her picture taken every month because we were told we would not have her very long and I wanted excessive documentation of her life. I also have a large shrine (landfill) in the basement that contains every durable item Naomi has ever touched or used. Rob threw out her broken highchair 2 years ago and I am still mad about it. Because broken plastic baby stuff is VERY important for preserving one's memories, right? Maybe not so much, though I choose not to help myself either. It was fun and also sad taking her every month to have her picture taken. Sewing was a big part of my coping at this time. It still is, when I can find time to sew, which has been very rarely recently. It is when I think and clear my mind, process thoughts and emotions. It is also when I make progress. I have worked so very hard with Naomi and made so very little progress. It is painful to see all of my efforts come to mostly nothing. So the production of something tangible and relatively durable when I sew relieves a lot of the anxiety that builds around caring for Naomi. At this time I exclusively sewed things for Naomi. I would sew while she napped and then dress her up in what I made and take her picture. For example, see the picture below.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIhVoR0BkBoCNc-lBdxQJWg__XjH5ZtdFsl2cG6gLxnBn4TvOsuNhStfu6k755qgZe2_ic3KMXvsM3SV8azo1fLmOwnW5Dm_Ddad3IdiQ-9WdX7ApTuWbb7HPbMrj_WRd-fa045MK3saMC/s1600/IMG_2951.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIhVoR0BkBoCNc-lBdxQJWg__XjH5ZtdFsl2cG6gLxnBn4TvOsuNhStfu6k755qgZe2_ic3KMXvsM3SV8azo1fLmOwnW5Dm_Ddad3IdiQ-9WdX7ApTuWbb7HPbMrj_WRd-fa045MK3saMC/s1600/IMG_2951.JPG" height="320" width="213" /></a></div>
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Rob enjoyed taking her for walks around the yard in her baby bjorn. She really liked being in it. I have a feeling she would still like it, if they made them for 5 year olds and if it would not kill his back to wear her in it. </div>
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When I look back, Naomi really was in some ways very easy to care for at this point, compared to how she is now. In most ways, now that I have cared for a typically developing child for 15 months and hopefully counting, I also realize that Naomi's was very difficult to care for as well. Typical kids are a breeze. I have been repeatedly told to "watch out!" once Lydia reaches this or that phase, because then she's going to be really difficult. Except that she gets there and it's not, compared to Naomi. Here are some of the ways she was easy. Naomi transitioned from co-sleeping with me to sleeping in her bed from 8pm to 630am in one night. One night she was fussy and would not settle, I put her in her crib to sleep instead of keeping her with me. She cried for 20 minutes, fell asleep and slept all night that night and every night after that. In fact, I made the dress above the night I sleep trained her. Anyone who has children knows it is never that easy. She was very portable and mostly agreeable too. She was surprisingly flexible. I say surprisingly because she is extremely inflexible and wedded to routine and familiarity now. And there is absolutely nothing that is easy about caring for her. I wish we had known to take advantage of this phase and had done more things that are difficult to impossible to do now, like travel. Of course, I was so extremely depressed then that it is hard to imagine doing much even if we had known. We did, however, take Naomi on a trip to Cabo San Lucas, Mexico. Dear friends of Rob's from his college days, Zee and Andrea, invited us to their time share with them. We wanted Naomi to have as many experiences as she could, and to meet as many of our friends as she could, so we jumped at the invitation. It was a wonderful trip. Away from our regular lives, it was easier to let reality recede a bit and just enjoy being a family. It was on this trip, at a McDonald's in Front Royal, VA, on our way to Dulles, on my 34th birthday, that Naomi laughed for the first time. It was a thrilling, magical sound. She still giggles and laughs a lot. She likes to be silly, and she likes you to be silly with her. It was also on this trip that Naomi started tracking objects. She was 7 months old. By comparison, Lydia was tracking by the time she was 2 months old. </div>
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<tr><td class="tr-caption" style="text-align: center;">This was how we fed Naomi in the hotel on the trip down. She was SO EASY to feed. She would eat anywhere. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">She would even eat in her seat on an airplane in flight. It was fun to feed her. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I called this her Magic Garden swimsuit. Remember that show? She wore this bathing suit a lot that summer, as Grandma and Poppa put in a pool that year too. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Here we are the morning after we arrived in Mexico. The house was situated on a cliff overlooking the Pacific Ocean. Our room was behind us and faced the infinity pool and the ocean. It was beautiful. And no, I am not wearing bicycling bibs as my sister has suggested. I was wearing my nightgown.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg04pmNRsCF6ytXjljE_kyBmdwNM2Or4VvMB-NL7NazKZq4Tt9aSP4KeRxx5iAM5p7p1l_TuJh7nbqRq8l9o-nJfVw7m7iPI35YfM62QwUQfEMTVhkpUkpUH6C64f4sAO_InwPpiN7hqNzc/s1600/IMG_3134.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg04pmNRsCF6ytXjljE_kyBmdwNM2Or4VvMB-NL7NazKZq4Tt9aSP4KeRxx5iAM5p7p1l_TuJh7nbqRq8l9o-nJfVw7m7iPI35YfM62QwUQfEMTVhkpUkpUH6C64f4sAO_InwPpiN7hqNzc/s1600/IMG_3134.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Why not dress your child in a cover-up that makes her face the center of a flower? </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Y3WJbFccHgLDTeRWFxfEhiRjAINqbMia5UG4O7ytN8Ms7ej7bmbzcCMTS0jVr5Jqilq5mUnixQNhr02G1WM0cqAsgVtxJUo5QLOj1ITqjUByCgNJvoEAE7VNg9TUpe9BtOVQxgrF8rju/s1600/IMG_3138.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Y3WJbFccHgLDTeRWFxfEhiRjAINqbMia5UG4O7ytN8Ms7ej7bmbzcCMTS0jVr5Jqilq5mUnixQNhr02G1WM0cqAsgVtxJUo5QLOj1ITqjUByCgNJvoEAE7VNg9TUpe9BtOVQxgrF8rju/s1600/IMG_3138.JPG" height="320" width="213" /></a></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBlc8GZ1ZRQboW4snm0EWV1klL67aGQg_21yYorBQtrCtbpXZl4LXYES8udoVPDldjgFLjzo9QwPTxIVwlXTxo0DsT7t7-z7Z69FaKfxE173GRK7TQZfD_9nlO910HXCxaCBFIFQkYmbc_/s1600/IMG_3143.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBlc8GZ1ZRQboW4snm0EWV1klL67aGQg_21yYorBQtrCtbpXZl4LXYES8udoVPDldjgFLjzo9QwPTxIVwlXTxo0DsT7t7-z7Z69FaKfxE173GRK7TQZfD_9nlO910HXCxaCBFIFQkYmbc_/s1600/IMG_3143.JPG" height="213" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8I_GoGv_rVyzmS6W8cedMedHq2a0CEgTV-ijTpK2TucEURHNojCZAMabjuvaimktdzwVKDXNUzs1NLoIcbDCmZX7dkszBt2DlvmNBaoLmPmJeiOhHaYWltbu-PxYe5YE_X9f2uIIuQVb/s1600/IMG_3144.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8I_GoGv_rVyzmS6W8cedMedHq2a0CEgTV-ijTpK2TucEURHNojCZAMabjuvaimktdzwVKDXNUzs1NLoIcbDCmZX7dkszBt2DlvmNBaoLmPmJeiOhHaYWltbu-PxYe5YE_X9f2uIIuQVb/s1600/IMG_3144.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loved Daddy.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw2uTEq4eugE3AE8pdq9T4Nhf1Ty9WbjqVnUiUSqtEaCaojRbG5bHY8qagpHPnJYz2ogPBitcnnohwvqB9HrV6h29ha68Z03lSJZAouRHOVTB1p8DVguDX9M-mnqtbwopn9G5gp83QWCSz/s1600/IMG_3159.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw2uTEq4eugE3AE8pdq9T4Nhf1Ty9WbjqVnUiUSqtEaCaojRbG5bHY8qagpHPnJYz2ogPBitcnnohwvqB9HrV6h29ha68Z03lSJZAouRHOVTB1p8DVguDX9M-mnqtbwopn9G5gp83QWCSz/s1600/IMG_3159.JPG" height="213" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe84ptDsFAWSHmMfKNZgdEw4To_dp0mESCuc03KAOCtO2ZxrVRJbbygZ6NMKU8mXfmEtwH0HK7baemIdj5aF0TVbdREC-NpZewPb5v7Nar9RYuf-6pra_OH6AFkmxhaTKR0jhDBvphSbYQ/s1600/IMG_3175.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe84ptDsFAWSHmMfKNZgdEw4To_dp0mESCuc03KAOCtO2ZxrVRJbbygZ6NMKU8mXfmEtwH0HK7baemIdj5aF0TVbdREC-NpZewPb5v7Nar9RYuf-6pra_OH6AFkmxhaTKR0jhDBvphSbYQ/s1600/IMG_3175.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wearing the sunhat that reduced me to tears the day we got her first Batten's diagnosis, a few months previous to this.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitjeb2Ymv0Hn3frQTjP9lfsYyVNjTviHj9KeaMyOMAwy-dNLuFSOr4KoXm01sLpe0dsHDuS06ZzNfYmPHNqukdMTLjwWjXH4gN70BDIR_UGashLSitlGZYA1MsnGDMdGZSaXUpBrh5zIp5/s1600/IMG_3189.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitjeb2Ymv0Hn3frQTjP9lfsYyVNjTviHj9KeaMyOMAwy-dNLuFSOr4KoXm01sLpe0dsHDuS06ZzNfYmPHNqukdMTLjwWjXH4gN70BDIR_UGashLSitlGZYA1MsnGDMdGZSaXUpBrh5zIp5/s1600/IMG_3189.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi fell asleep in the pool in her raft all the time, both in Mexico and back at home. She has always loved the water. She is still using that raft. Now we call it her boat, and she makes it go by kicking with her feet. I don't know if she will be able to use it again this summer. She is getting so big. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg33Ik85_JE6cp90dATZOTxGBxgKPPtO6E7bHLRiVuQMCwPH14Oww6mWUdgumB4VmwhvZ4SA8yj1R4ObrFRj3L2I7InOP5IPZ0kjVtJZ8LBZsADH3QZr6FcVW7LN65fUJN-OYNDjt_bgsxn/s1600/IMG_3193.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg33Ik85_JE6cp90dATZOTxGBxgKPPtO6E7bHLRiVuQMCwPH14Oww6mWUdgumB4VmwhvZ4SA8yj1R4ObrFRj3L2I7InOP5IPZ0kjVtJZ8LBZsADH3QZr6FcVW7LN65fUJN-OYNDjt_bgsxn/s1600/IMG_3193.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Of course she finished her nap on a lounge chair by the pool. She took a few naps poolside at Grandma and Poppa's this past summer too. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC01HVW2rueKAwah0TUoO5uaWKEVPBLaQ7tRN2HKzYIkLtWgRTWht0OJcAzMZvDERt8DaN2FFBPFiMrMozGs9YMo5x3w1PUgcyvH-9SPN5w7hvULBolQvcGEDKgQmgcSkf8dkVb3ZpIwz_/s1600/IMG_3297.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC01HVW2rueKAwah0TUoO5uaWKEVPBLaQ7tRN2HKzYIkLtWgRTWht0OJcAzMZvDERt8DaN2FFBPFiMrMozGs9YMo5x3w1PUgcyvH-9SPN5w7hvULBolQvcGEDKgQmgcSkf8dkVb3ZpIwz_/s1600/IMG_3297.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi enjoying the scintillating conversation at lunch. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoWMbNNo07GWQZuCfWzGjP-dVwVyGzPpvNmIhpw5gjtmo7YCaQCOnnjtOPng5-YqlSmWPJNQKGb4F0N1XaV8lOeEmbgtVuA15SZe1mOAxpeqSAri-TgdGVBHb7tqUwhGPhoU0saDLoipCa/s1600/IMG_3308.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoWMbNNo07GWQZuCfWzGjP-dVwVyGzPpvNmIhpw5gjtmo7YCaQCOnnjtOPng5-YqlSmWPJNQKGb4F0N1XaV8lOeEmbgtVuA15SZe1mOAxpeqSAri-TgdGVBHb7tqUwhGPhoU0saDLoipCa/s1600/IMG_3308.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the marina in Cabo. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPh-Y_WUlKsNX0nVmurcqVcyMyNVCpgpb0D9QAY4kyUbksubEUudOZZSrkYJMZufmW3FZKLZSEWxXciaoy3njsavJYBPHEEXa-jC2Zrcr155Kqy5ngzhyphenhyphenrxzRGTT-FfRQKej_VtletYMgH/s1600/IMG_3320.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPh-Y_WUlKsNX0nVmurcqVcyMyNVCpgpb0D9QAY4kyUbksubEUudOZZSrkYJMZufmW3FZKLZSEWxXciaoy3njsavJYBPHEEXa-jC2Zrcr155Kqy5ngzhyphenhyphenrxzRGTT-FfRQKej_VtletYMgH/s1600/IMG_3320.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lunching with Daddy in downtown Cabo. </td></tr>
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We got back from Mexico with a lot of happy memories and continued on as best we could. The Pens were in the playoffs that summer. Naomi and Daddy watched all of the games together. He had a lot of fun with her. She mostly no longer tolerates anything on the TV except her shows. Like I said, she was so much easier then. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA_pE6dmesG-wJt70R2_OZdvx4hb5LPYZOnyPXfU04gtYz1OeOsF350ScoN3hPGoylmg2zlqfi9c5NEGM0YR6sa7YtQ_O0qRQwuV2cVD8BWa7P6ijuJhD3umSLAapd0rCfLFLX6jvH2KVv/s1600/IMG_3324.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA_pE6dmesG-wJt70R2_OZdvx4hb5LPYZOnyPXfU04gtYz1OeOsF350ScoN3hPGoylmg2zlqfi9c5NEGM0YR6sa7YtQ_O0qRQwuV2cVD8BWa7P6ijuJhD3umSLAapd0rCfLFLX6jvH2KVv/s1600/IMG_3324.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We bought her an Iceburgh doll at the first Pens game we attended after she was born. She loved it. She would stare at it, probably because of the black and yellow contrast, and when she learned to use her hands to reach and grab for things she would bring it to her mouth and chew on his beak, which was all very cute thrilling for us<br />
. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij9uQXENUcYAvb6tBE5a9thZdRCbOvFV1OXzkVXmNin4J7g751q-eJF5HRmxwRDWKv2mQGNpL4VtYO4P5Hl5nh2zzu9xB2SgxHSMmtGGP1OAGYj7I73-P2elt3A2w9Eg5xTOmQikpguW_e/s1600/IMG_3325.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij9uQXENUcYAvb6tBE5a9thZdRCbOvFV1OXzkVXmNin4J7g751q-eJF5HRmxwRDWKv2mQGNpL4VtYO4P5Hl5nh2zzu9xB2SgxHSMmtGGP1OAGYj7I73-P2elt3A2w9Eg5xTOmQikpguW_e/s1600/IMG_3325.JPG" height="320" width="213" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaClLmJWoTaWDns87uro2XJAZMhOQCzfSusVE94DoPDr7bOIik9FTFF5dQMBjxmbv8lYHwshkWzpavCY2TY2GT6Stuwi3zBXFAV9Odf050RuKBZK_Z17H0j8aaDp4Ao2ZKyawC16w7OkjE/s1600/IMG_3335.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaClLmJWoTaWDns87uro2XJAZMhOQCzfSusVE94DoPDr7bOIik9FTFF5dQMBjxmbv8lYHwshkWzpavCY2TY2GT6Stuwi3zBXFAV9Odf050RuKBZK_Z17H0j8aaDp4Ao2ZKyawC16w7OkjE/s1600/IMG_3335.JPG" height="213" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ15ZuQmFRHus1hahGIoyvf5CXzh6ANEmxrbu67HdB4RJRiTgfqqMkMJwUvy2CRuLFxSURNueiU9Pm184n44rxI2BJEs72L4sUrCByE0xqnt1NHJMpgqwxIeQz1bf6y3BlDVXRLKmxhqik/s1600/IMG_3343.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ15ZuQmFRHus1hahGIoyvf5CXzh6ANEmxrbu67HdB4RJRiTgfqqMkMJwUvy2CRuLFxSURNueiU9Pm184n44rxI2BJEs72L4sUrCByE0xqnt1NHJMpgqwxIeQz1bf6y3BlDVXRLKmxhqik/s1600/IMG_3343.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Naomi looking devious. I loved these pajamas. They have lady bugs on them. Naomi loves Ladybug Picnic from Sesame Street and we now live in a house that could well be considered a ladybug sanctuary. </td></tr>
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Naomi also took her first boat ride that summer. Rob's parents belong to a boat club on the Allegheny River. Rob spent a lot of time there as a kid, and actually even swam in the river. In the 70s and 80s. He probably has secret super hero powers from all of the toxic chemical exposure. Someone let me know if he does, and if he uses them for good or evil.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhESom-uZaTmZp_Vdo-z8EoBgXA3a4hiDhbZDXK6nasyBCPOaQ0j6NDrWaFwACJ7E7UYGRAdfsQKnuAVmOJhFniXPtPIzL6fzfLlSLwGRCtpeP1Dk0WDUypia0jCUxmhhS74fhEqnnX-F67/s1600/IMG_3489.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhESom-uZaTmZp_Vdo-z8EoBgXA3a4hiDhbZDXK6nasyBCPOaQ0j6NDrWaFwACJ7E7UYGRAdfsQKnuAVmOJhFniXPtPIzL6fzfLlSLwGRCtpeP1Dk0WDUypia0jCUxmhhS74fhEqnnX-F67/s1600/IMG_3489.JPG" height="213" width="320" /></a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6OiBsGHA4hb4Lq48tRA7-AuQ7RztEolV2niHBYcByHTGxssTUyC3TrhSI42hCXtsYr8bG5tO4P0n6LkM7qcbOWqytimc7p0Ntv_HJxEmPRvMkhYpwiD3J4_dOCsUelI4akHcTB9BKgxRc/s1600/IMG_3512.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6OiBsGHA4hb4Lq48tRA7-AuQ7RztEolV2niHBYcByHTGxssTUyC3TrhSI42hCXtsYr8bG5tO4P0n6LkM7qcbOWqytimc7p0Ntv_HJxEmPRvMkhYpwiD3J4_dOCsUelI4akHcTB9BKgxRc/s1600/IMG_3512.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi on the boat. She was blah about it. In following years she hated it, and the past two summer she loved it. She likes like to lay on the floor of the boat and have the wind rush over her. Naomi LOVES to have wind blowing on her face. And cold air. And especially cold wind. She may be part Yeti. </td></tr>
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We spent enormous amounts of time on our screened porch that summer. It was a great porch. The backyard was filled with oak trees and sloped steeply away from the house, so the porch was nestled among the upper branches of the trees. It was like a tree house and was far and away the best thing about that house. We saw all kinds of birds, especially woodpeckers. Even a pilliated (Woody Woodpecker) woodpecker. They are very large up close. Naomi loves loves loves to be outside. We intend to put a large screened porch on this house this summer so Naomi can spend more time outside, and so I can be protected from mosquitoes and wasps while she does. She ate most of her meals out there and had most of her baths out there.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf7G5mJMt0wq1ATQpyrATW7UjDI2FEnOmq16HHtx6e8yf3lxwXC4m9B_SEADKqDNMFi4LgOydw4tWUAWI_bHhicyN7Zfc5EGNfmnWUAHyCsF0SmR97f228hJ0u_hlm9c20nbkZLhwHOWMB/s1600/IMG_3584.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf7G5mJMt0wq1ATQpyrATW7UjDI2FEnOmq16HHtx6e8yf3lxwXC4m9B_SEADKqDNMFi4LgOydw4tWUAWI_bHhicyN7Zfc5EGNfmnWUAHyCsF0SmR97f228hJ0u_hlm9c20nbkZLhwHOWMB/s1600/IMG_3584.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An alfresco bath after and alfresco dinner. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUu8QY19luIe4Sqy3WhuYwF4zpsM6OZ3xUMrZQP9YnmOkpwEixENctsKOKI4oQBcMnCBeqrYUOYhAx3GvfO52jFyVOlgR-6wYN6Skv-PTTSdPwUwIGJtTMss7t8LWICju4lFqoOXZaKY79/s1600/IMG_3592.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUu8QY19luIe4Sqy3WhuYwF4zpsM6OZ3xUMrZQP9YnmOkpwEixENctsKOKI4oQBcMnCBeqrYUOYhAx3GvfO52jFyVOlgR-6wYN6Skv-PTTSdPwUwIGJtTMss7t8LWICju4lFqoOXZaKY79/s1600/IMG_3592.JPG" height="213" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Cozy and comfy in her pajamas, relaxing with Daddy on the glider on the porch before bed. We still have the glider; it will be on the new porch. </td></tr>
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Naomi took her first of many trips to the Outer Banks, NC. We were in Kitty Hawk and could see the Wright Memorial from the house we rented. It was Naomi's first of many vacations with her vacation buddies Bill and Sarah. Auntie Sarah, Uncle Brent, Grace and Margot were there too.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD2tjAqtC_tfJynvueL7K3_cR9CBMXMjllYUlWgAXQEhG7L_1U9Lm6VQ4ZNeNLk8Uvj1D9oXjC_4UW6lFh0nJnFMc3IpoT7i3I-n8zqPnp-v2k0TZ-I2rlkgjTvMa6vlzj7TEyCkydU7Qt/s1600/IMG_3715.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD2tjAqtC_tfJynvueL7K3_cR9CBMXMjllYUlWgAXQEhG7L_1U9Lm6VQ4ZNeNLk8Uvj1D9oXjC_4UW6lFh0nJnFMc3IpoT7i3I-n8zqPnp-v2k0TZ-I2rlkgjTvMa6vlzj7TEyCkydU7Qt/s1600/IMG_3715.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi loved the hammock. Maybe the new porch should have hammock as well as a swing and glider. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Napping with Mommy on the beach. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Snuggling with cousin Grace on the porch overlooking the Atlantic. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPWse7TB1BsPcgObNx2P-YWBSZCsP7sJPX90le3AUKaxpQ-uHxFfv4KTSIjKmjOMKQVToc271ULXyms6iV_89xqn1CxQZvv713UkC-Y42aJS9sbT7W3KNgW1sMh__sDJVGS74BtHVI9SZg/s1600/IMG_3758.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPWse7TB1BsPcgObNx2P-YWBSZCsP7sJPX90le3AUKaxpQ-uHxFfv4KTSIjKmjOMKQVToc271ULXyms6iV_89xqn1CxQZvv713UkC-Y42aJS9sbT7W3KNgW1sMh__sDJVGS74BtHVI9SZg/s1600/IMG_3758.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swishing her feet in the sand.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJXc2sJz291mxINs57_fm6DleM26qQ7L5ItTN8_SnEprCttf2TUw7tz9PDJkCqBbB9euovlEzSpyqVPttUx4zo06xexX7zldCGd2gEJ6CZJyWG6Xrn2ApzZY6xMU5rdCflQC3_0OlYLEYO/s1600/IMG_3761.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJXc2sJz291mxINs57_fm6DleM26qQ7L5ItTN8_SnEprCttf2TUw7tz9PDJkCqBbB9euovlEzSpyqVPttUx4zo06xexX7zldCGd2gEJ6CZJyWG6Xrn2ApzZY6xMU5rdCflQC3_0OlYLEYO/s1600/IMG_3761.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying the sun and warmth in her sand chair. </td></tr>
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Later in the summer Naomi discovered that she could spin in circles on her back by throwing her legs to one side, digging down with her heels, and rotating her body. She was 9 months old. I can't explain how thrilling it was to discover our child in a different position than the one we left her in. She started moving around in her crib too. Not long after that, we had to stop putting blankets on her when she slept because she lacks the ability and wherewithal to swat them away from her face. So we had to start dressing her in multiple layers of pajamas to keep her warm at night. We recently discovered that once she falls asleep she does not move much other than rolling from her back to her side and back again. Now we cover her up with blankets when we go to check on her before we go to bed. It is very satisfying in a very primal way to cover my child with a blanket. <br />
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<tr><td class="tr-caption" style="text-align: center;">Naomi moving around in her crib when she was supposed to be napping. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Being silly modeling another of Mommy's creations. Naomi is very proud of her silliness and gets the biggest smile if you notice her silliness and comment on it. </td></tr>
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Naomi used to have a fear/hatred of new places, especially of big box stores, especially Lowe's. I started trying to desensitize her by taking her out some place every day. She would usually scream and cry and then stress sleep. So we would go home and she would finish her stress nap in her car seat in the house. It kind of worked. Kind of not. Now when we want to take her someplace new we bring her portable DVD player and the tray for her wheelchair. If she can focus on her (familiar) shows she can usually tolerate a new place. </div>
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Naomi started reaching for objects not long after she started tracking them. It was very exciting. She made a lot of exciting progress for the first 18 months. She was still extremely developmentally delayed, but she was also making constant slow steady progress too. As upsetting as slow progress can be, no progress is worse, having experienced both. Even worse than no progress is regress. We've experienced that too. </div>
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She was not yet terrified to touch new things either, which was nice. It was fun. </div>
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<tr><td class="tr-caption" style="text-align: center;">Naomi getting her ring stacker. She would NEVER do this today. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Just because I like this picture. </td></tr>
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I was also working very very hard on Naomi's therapies with her, which she hated. She cried the whole time. Every day. Every single day I had to make her cry for long periods of time. It was very hard to take, especially in my very depressed state, but I was desperate to help her and believed that if I worked hard enough I could make a difference. Below she is practicing weight bearing on her arms. She tolerated it better if I kept my face very close to hers. It is not easy to be face to face with your baby while she cries for you and not end the activity that is making her cry. I don't have a lot of sympathy for mothers who complain that they can't do basic things with their children, like discipline them for bad behavior or not feed them junk food they want, because it is too upsetting when they cry. I was always a compassionate, though perhaps prickly, thorny, person. This experience with Naomi has made me infinitely more compassionate when it comes to real problems. It has also made me extremely not compassionate and even intolerant of fake/invented/self-inflicted/nonsense "problems". I have found that this experience is common among parents of children like Naomi.<br />
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We also took our first trip to Boston. After the University of Pittsburgh could not identify which type of Batten's disease Naomi had we were sent on to a Batten's expert at Mass General. Naomi had more blood drawn and another skin biopsy. That was in July. Daddy took Naomi sightseeing while we were in Boston. Mommy was struggling with a hideous attack of her chronic insomnia and so she was trying to rest in the hotel room. Naomi was not struggling with insomnia and slept through most of their sight seeing, as you can see in the pictures below.<br />
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<tr><td class="tr-caption" style="text-align: center;">Blood was drawn from her right arm and the skin biopsy taken from her left. I hate the scar from that biopsy. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi using her hands to play with a toy in the hotel in Boston. I got so comfortable with her doing this so quickly. I never imagined she would stop. I wish I had reveled in it even more than I did. <br />
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<span class="Apple-style-span" style="font-size: small; text-align: center;">We heard pretty much immediately that they and the two independent pathologists that they contract with did not necessarily think Naomi had Batten's disease, but that maybe she had a different type of</span><span class="Apple-style-span" style="font-size: small; text-align: center;"> </span><span class="Apple-style-span" style="font-size: small; text-align: center;">lysosomal</span><span class="Apple-style-span" style="font-size: small; text-align: center;"> </span><span class="Apple-style-span" style="font-size: small; text-align: center;">storage disease. So they started testing her for all of the 10 known types of Batten's disease and also an enormous list of literally dozens of</span><span class="Apple-style-span" style="font-size: small; text-align: center;"> </span><span class="Apple-style-span" style="font-size: small; text-align: center;">lysosomal</span><span class="Apple-style-span" style="font-size: small; text-align: center;"> </span><span class="Apple-style-span" style="font-size: small; text-align: center;">storage disorders and related disorders. In August we started getting results....she didn't have this one, she didn't have that one. It gave us hope. They did tell us that she was</span><span class="Apple-style-span" style="font-size: small; text-align: center;"> </span><span class="Apple-style-span" style="font-size: small; text-align: center;">heterozygous</span><span class="Apple-style-span" style="font-size: small; text-align: center;"> for CLN5, the type pf Batten's with which they eventually diagnosed her. That means that they found she had a mutation on one copy of that gene, but they presumed that the other copy of the gene was fine. So in August 2009 we were told she did not have CLN5 Batten's disease. </span><br />
After Boston we spent the rest of the summer in the routine we had established. Therapy for Naomi 3 days a week, lots of time on the porch, lots of time swimming at Grandma and Poppa's. Lots of time playing with Naomi.<br />
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<tr><td class="tr-caption" style="text-align: center;">Sweetly sleeping all tucked in with Iceburgh.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi has always liked to be "attacked."</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Practicing standing at her music table. She loved her music table and for a long, long time she loved standing. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Here I went to check on Naomi after she did not fall asleep for her nap and I found her playing wildly with her mirror. We had to take it out of her crib, as choose to stay awake and play rather than sleep. Funny and cute. Not to be defeated, Naomi would go on to find many ways of staying awake and playing instead of sleeping. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpGi7xfPTtxnFEyjkfEhbAeXTQ2Ys33otC6yvcg7FqLeVaKsqW6scpyxvaxTZSkcVQfemaKou7pi7T3bqH2mAz6JzAr6RQRd7hVWbb4BSmhsVmjn5C7SsN08g5IICBSV8iNwUbS7efAoN_/s1600/IMG_4018.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpGi7xfPTtxnFEyjkfEhbAeXTQ2Ys33otC6yvcg7FqLeVaKsqW6scpyxvaxTZSkcVQfemaKou7pi7T3bqH2mAz6JzAr6RQRd7hVWbb4BSmhsVmjn5C7SsN08g5IICBSV8iNwUbS7efAoN_/s1600/IMG_4018.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with her collection of 'microbes.' She LOVED these. We had/have probably a dozen of them. She still likes to play with them. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSnk_THTSjfY3s4Mi_F6FdBn4fX_AThPw2zOJ6_AkJ4pfu_lsr2cSmbJcTCjiyKxanwWLtLBIyFS_Vc1oBtsg2i4CkIGy2aMnUhuvzTiC0NtSvpbpHnF_axAZakrpcQ6-2_VVFmcgJn-9P/s1600/IMG_4031.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSnk_THTSjfY3s4Mi_F6FdBn4fX_AThPw2zOJ6_AkJ4pfu_lsr2cSmbJcTCjiyKxanwWLtLBIyFS_Vc1oBtsg2i4CkIGy2aMnUhuvzTiC0NtSvpbpHnF_axAZakrpcQ6-2_VVFmcgJn-9P/s1600/IMG_4031.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ta da!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Another way to practice weight bearing. She loved that toy too. Her farm. The sun at the top had a flashing light that fascinated her. I will never as long as I live forget the sounds and songs of that toy. Neither will anyone else that spent a significant amount of time with Naomi. Naomi was all about her farm that summer. And fall. And winter. By spring she had a new favorite toy, Eeyore.</td></tr>
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So, here we were at the end of Naomi's 9th month. We were receiving report after report that Naomi was negative for this and that disease. She had learned to see, to reach and to use her hands. She was making slow but steady progress on her developmental milestones. We were beginning to hope again. We were beginning to see a future again. Ha ha. The worst was yet to come. </div>
Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com2tag:blogger.com,1999:blog-8265861613312682909.post-15132762072277053492014-02-04T18:30:00.002-08:002014-02-04T18:44:36.279-08:00January is Over.<div class="separator" style="clear: both; text-align: center;">
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Well. January is over. I am not sorry to see it go. January has become one of my least favorite months. For a lot of reasons, which are all something along the lines of:</div>
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Bad Things Happen to the Caugheys in January. </div>
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Without detailing my list of grievances against January, I will admit that some of the Bad Things are, truly, just minor annoyances. Though others are more than just minor annoyances. Unfortunately. This January was more an unending series of minor annoyances. All. Month. Long. First, we had the hideously cold weather. This weather caused several problems. The heating system in our house was never properly installed and is in the process of being completely replaced, ductwork and all. Which means is that some rooms are sweltering and others feel more like an unheated attic space. The two rooms that feel like an unheated attic space are the children's bedrooms. Annoying. It also meant that school was delayed or cancelled day after day after day after day after day. And a delay for Naomi is a cancellation, since she is in a 2.5 hour morning program. I understand that some children are ecstatic when school is cancelled, but Naomi is always devastated. She LOVES school. Most days I don't even mention when she doesn't have school because she cries with disappointment when I do. So I try not to say anything at all about going to school until I am sure she is going to school. Then she missed a day for an appointment in Pittsburgh, a day because her wonderful aide Tina needed to be out and a sub could not be found, and two days for being sick. She attended school well less than half of the days for which it was scheduled in January. I could have gone with Naomi as her substitute aide, but the last time I did that she was enraged the entire time. Apparently she does not like having Mommy at school with her. What kid would, really. It's embarassing, I suppose. And, really, she couldn't have been sick on two of the days school was cancelled anyway? She HAD to get sick for two days school was actually in session? Annoying. </div>
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Here are some pictures of Naomi and a few of Lydia too, just because. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhEGF4PwxbP6uV_DUA0PUJdSbTpiQivPD5MXOuRvT8e1ljEm8BXNqzV0gXcJinJyhvl6acUKbscxk6ppymXUp6p1ipmX10HJMU9Vw9MvG_Ath89lt4IjrYIhqI4YlwBRey8MV1Y9sgrrGm/s1600/001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhEGF4PwxbP6uV_DUA0PUJdSbTpiQivPD5MXOuRvT8e1ljEm8BXNqzV0gXcJinJyhvl6acUKbscxk6ppymXUp6p1ipmX10HJMU9Vw9MvG_Ath89lt4IjrYIhqI4YlwBRey8MV1Y9sgrrGm/s1600/001.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is a girl who loves school. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfUUvizHbEN4BfOAZkyJRDR_123U0gwnrsKtT_p7EjmmrYfdcaX7pvsIFhnvr7ed1_GfMVb_oRrMhajEOtLgrzZ-AX4a_ODggOtfrinqUua_yFu-eRfQaaH-GzEZkXCm0bN8uxm6dAXqDw/s1600/011.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfUUvizHbEN4BfOAZkyJRDR_123U0gwnrsKtT_p7EjmmrYfdcaX7pvsIFhnvr7ed1_GfMVb_oRrMhajEOtLgrzZ-AX4a_ODggOtfrinqUua_yFu-eRfQaaH-GzEZkXCm0bN8uxm6dAXqDw/s1600/011.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh, Naomi also got a hair cut! She got a short bob. Shorter than I intended but I accidentally cut one side too short and had to make it all match. It is hard to cut her hair since she moves unpredictably and I have to keep her pinned in my lap while I do it. It looks cute and it will grow back. I have been missing her big, fluffy Dakota Ponies terribly. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSbPLiwvWHiPIlR16fkLYTOWQ2KZ7eAu8_DPD2y5gJ6yY0G_A9_rwonRrOy0VgCBabn7OMcyZDHtMHl5muFHxJTtYNzjrseLbKgbWTVyVBXBnkISicu1DvpYuzvAYzQ3IhjvZ34uGK3Ml_/s1600/022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSbPLiwvWHiPIlR16fkLYTOWQ2KZ7eAu8_DPD2y5gJ6yY0G_A9_rwonRrOy0VgCBabn7OMcyZDHtMHl5muFHxJTtYNzjrseLbKgbWTVyVBXBnkISicu1DvpYuzvAYzQ3IhjvZ34uGK3Ml_/s1600/022.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So big!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcQQYfV86ty0UvVl0FTyJxxjqkPBTZwj9P43Ngu8MhYK8gZsjsRsA2rFglASlJy7QEUZe-tn8__NiwvG6jCFV9-GiHtcAtnDz7uGsYiih0U9NapATqjcqVweVIDDnN1KMtJuzsf2rB2FUg/s1600/032.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcQQYfV86ty0UvVl0FTyJxxjqkPBTZwj9P43Ngu8MhYK8gZsjsRsA2rFglASlJy7QEUZe-tn8__NiwvG6jCFV9-GiHtcAtnDz7uGsYiih0U9NapATqjcqVweVIDDnN1KMtJuzsf2rB2FUg/s1600/032.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia with two Dakota Ponies. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvF7sxPwBQGebyFPqq9YRortCDb0TVKAI9MoSQ6LebboOFsSy_9zER_d9ALARMHHdloQRhdCRH2EtUL3zpoOUnFRA37qVnglz35dKwhWdJRQ-aqWM5NKMWL_qkqZiXkri5b4xxh6M6gBec/s1600/034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvF7sxPwBQGebyFPqq9YRortCDb0TVKAI9MoSQ6LebboOFsSy_9zER_d9ALARMHHdloQRhdCRH2EtUL3zpoOUnFRA37qVnglz35dKwhWdJRQ-aqWM5NKMWL_qkqZiXkri5b4xxh6M6gBec/s1600/034.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia showing the spray bottle of water I use to attempt to tame her epic frizz. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8wt9c3acJzvsVBJwAkO35KAvCTIJpfcjNFvPRS22Y1a3MNtZTWmbIAH0NaSkF-7SFhyphenhyphen1oISWry2EWqKFp2r3qfz0xofFEiAYZo2tbs3vbhf2g1FczyfyCxzDtwdA0RxEN5Ntd6AEZyCq8/s1600/046.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8wt9c3acJzvsVBJwAkO35KAvCTIJpfcjNFvPRS22Y1a3MNtZTWmbIAH0NaSkF-7SFhyphenhyphen1oISWry2EWqKFp2r3qfz0xofFEiAYZo2tbs3vbhf2g1FczyfyCxzDtwdA0RxEN5Ntd6AEZyCq8/s1600/046.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Where's Lydia??<br />
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Lydia has become somewhat enamoured of Naomi, as well as intensely jealous. Lydia's jealousy of Naomi is new. Naomi has been consistently jealous of Lydia since she was born. I try to spend as much time one on one with the girls as I can, and then I try to have someone here with me at least 3 hours a day when Naomi is not at school so they both get their needs met. However, due to weather and other issues outside of my control, Naomi's nanny missed a lot of days this month too, especially the days when school was cancelled. This was bad for a number of reasons. First and foremost, Naomi loves Jenn (her nanny) and gets very sad when she doesn't see her. But also, it means long, long, long days of just me and the two girls, with neither of them getting the attention and playtime they need and me feeling pulled apart at the seams. It is really hard being alone with them for more than about 3 hours. Naomi needs 100% assistance for every aspect of her life and to do anything (play, etc) so she really needs a one on one aide all the time she is awake. If there is only one of me, and I have both Naomi and Lydia, well, you can see how it just doesn't work. They both get bored and lonely and cry a lot. But like I said, Lydia has a new found fascination with Naomi. She tries to snuggle with her and play with her. If Naomi happens to fall asleep on the floor, Lydia will snuggle up with her, or bring toys over and put them on her. It is very cute. And just recently she has started to approach Naomi when Naomi is awake, laying her head on her chest, or even hugging her. It is so sweet. Naomi tolerates it. I praise Naomi lavishly when she tolerates Lydia and tell her how much Lydia loves her and thinks she is pretty. Naomi LOVES to be loved and she loves to be thought pretty and cute. And I don't want Lydia to feel rejected. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE7xkoOAAS8Lbw_8ipxATTpOyCxBiNXy_pGP2iR94OX98daxge-9t2KGgk3zE8RuljfkgRGykVvcFqmOoO_RZzF1lCdHAgPxcuQBlQ7VrSIRfrEEa3nD4if5FYEUUb_MmD8JE8dOXq-H9F/s1600/060.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE7xkoOAAS8Lbw_8ipxATTpOyCxBiNXy_pGP2iR94OX98daxge-9t2KGgk3zE8RuljfkgRGykVvcFqmOoO_RZzF1lCdHAgPxcuQBlQ7VrSIRfrEEa3nD4if5FYEUUb_MmD8JE8dOXq-H9F/s1600/060.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First Lydia tried laying on Naomi. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNka1EQ9TGCWbwIoEUFK8fhpRZDmvYmmUeB_faoECMpvl_RXKSIyfWdLHvzGWvmCIEb2f5ZohpUwgt3dAQg4naPjkLj7qXKwVNe0sTfcsupfR-i_jqb5-_M-FfM4FGMhnvu6iRjHtYp0z0/s1600/062.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNka1EQ9TGCWbwIoEUFK8fhpRZDmvYmmUeB_faoECMpvl_RXKSIyfWdLHvzGWvmCIEb2f5ZohpUwgt3dAQg4naPjkLj7qXKwVNe0sTfcsupfR-i_jqb5-_M-FfM4FGMhnvu6iRjHtYp0z0/s1600/062.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was less comfortable than she anticipated.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD38jVKgD5qdcvCXBecpYngUPTSIznd34QlpmuqPFQwBSpMARhgch3eDdx4Gvm5hETeaxu_Nd-cnk3rXMT3eelnf4s1-zy5rCTVMnfvhkZd_iRGxv7KDILi8FdK8lauV2KpJY2a1cR7UIZ/s1600/069.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD38jVKgD5qdcvCXBecpYngUPTSIznd34QlpmuqPFQwBSpMARhgch3eDdx4Gvm5hETeaxu_Nd-cnk3rXMT3eelnf4s1-zy5rCTVMnfvhkZd_iRGxv7KDILi8FdK8lauV2KpJY2a1cR7UIZ/s1600/069.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Then she decided to lay next to Naomi. It was cold in the house due to weather/lack of adequate heating system so I had Naomi's hood up and a wool vest on Lydia, which was even more hilarious in person than it is in these pictures. Very English schoolboy. </td></tr>
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Then both girls also got sick. Lydia spiked a fever, which after two days turned in to a nasty cough and cold, which made her needy, whiney, and clingy...during a week I had no help and Naomi attended not one day of school. Not fun times at all. A lot of screaming and crying. Pretty much every day they both screamed non stop from 11am until noon. Nothing would soothe either of them so I would end up holding both of them at the same time while they wailed and bawled and lamented their bad forture for having a sister. Surprisingly, Mommy did not cry too. They really hated being held at the same time, but not as much as they hated it when I would hold one and not the other. If I tried to hold just Lydia, Naomi would siren scream. If I tried to hold just Naomi, Lydia would scream and cry and through herself down on the floor with high drama, basically faking an injury so I would put Naomi down and pick her up, and then be highly offended and cry harder when I did not fall for her ruse. One hour seems to be about the amount of crying it takes to wear them out. Then we would have lunch and Lydia would have a nap. Ideally Naomi would have napped then too, and I could have had some minutes of respite, but pretty much every day Naomi decided to fight sleep until Lydia was awake. Which was good for the two of them since it for sure maximized their one on one time. Just lousy for an overwhelmed Mommy with no help. <br />
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Then, Naomi got pink eye while Lydia was still sick and impossible. Two days after that Mommy and Naomi both got Lydia's cold. Then finally it was the weekend, and the month of January ended and we all started getting better. As long and exhaustive as this post may seem, I only included a sampling of January 2014's treachery. Sometimes it is better to just let it fade to black.<br />
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I have no expectations for February2014. It's better that way. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqBzckMSfWP6JltLIkDVVQ3LoAw9BBkSRntOcEVO5XWX8kIXKghuPNoOGerHnX-O9-gfTcHiFV7fxuXhorcZAFpUsoM_c0UtB3mMxKz4l1ZVKVFG92tgGWPe1pFTl2pgfAfD8HaEvgu2Jj/s1600/123.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqBzckMSfWP6JltLIkDVVQ3LoAw9BBkSRntOcEVO5XWX8kIXKghuPNoOGerHnX-O9-gfTcHiFV7fxuXhorcZAFpUsoM_c0UtB3mMxKz4l1ZVKVFG92tgGWPe1pFTl2pgfAfD8HaEvgu2Jj/s1600/123.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A sleeping pink eye infested Naomi. Note the discoloration on her eyelid. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIWqqSio-Y7k6AIgaryc_3x4s9NrmnL7QQ2ga4rvgNy9vk6chayJq0x-5cWAhOI8Um13XBqR-lm6USksu9WSMcMzvGAQt2xImDl9nj4eIyym9DKx2tmo8nPNIXugb1B7PhLJACzVod1hYY/s1600/150.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIWqqSio-Y7k6AIgaryc_3x4s9NrmnL7QQ2ga4rvgNy9vk6chayJq0x-5cWAhOI8Um13XBqR-lm6USksu9WSMcMzvGAQt2xImDl9nj4eIyym9DKx2tmo8nPNIXugb1B7PhLJACzVod1hYY/s1600/150.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi has been loving her jumper again, after many months of a luekwarm reaction to it. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPx-NqMTR8RKMrLAS7iO2FNAmzGldDdMWo6zA-wUrzdKGyPyneb5J-DvvEMwM6XucqWMGd1cGjMVX1Z9S6usC_bAjfDBEiCkdCd6z905gn16Aebc3_1NlNQ1ywVNrwEflvmCbAN0jUdTqE/s1600/155.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPx-NqMTR8RKMrLAS7iO2FNAmzGldDdMWo6zA-wUrzdKGyPyneb5J-DvvEMwM6XucqWMGd1cGjMVX1Z9S6usC_bAjfDBEiCkdCd6z905gn16Aebc3_1NlNQ1ywVNrwEflvmCbAN0jUdTqE/s1600/155.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Maybe January being over put her in a better mood too. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc6_eLuVUepHF167a0nAG7ZOQ65_WFmiL9GQez3nUqdkllV9HxPLbN3lpBFlKfOzIsBZGLQvq9CdXPjaZbXC1ewWGz29pr860m85s9mDcYbLllZQhj-sNStClQO10PwuIuwcD5HYYz2tMJ/s1600/175.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc6_eLuVUepHF167a0nAG7ZOQ65_WFmiL9GQez3nUqdkllV9HxPLbN3lpBFlKfOzIsBZGLQvq9CdXPjaZbXC1ewWGz29pr860m85s9mDcYbLllZQhj-sNStClQO10PwuIuwcD5HYYz2tMJ/s1600/175.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi all ready for school this morning. She had a terrible day at school. It was state inspection day so they were not in the regular classroom, but rather jammed in to a small room. Naomi hates change, so she was miserable. It was very frustrating because today was her first day of school after missing 5 days in a row. And tomorrow it will probably be cancelled again since a new storm with masses of ice and snow is being predicted. Enough already. Let me girl go to school and be happy. On the upside, Jenn was here today and Naomi was very happy to see her best friend. She played and sweet and cute and then peacefully fell asleep. She even woke up in a good mood from her nap too. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia trying to grab the camera. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghnJp2q5cGD8s8rCiHdPBdHalkg4HY3NKL5LkTs623NrLjMvmWMUYlWvM4aEHdrqkTU7WzRiBS0sGkrVaDeItHMRCyorVouIPtAEv1k95XNaO4fAzycJJiCXBj6s-437ydPuHHAxvtDk83/s1600/179.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghnJp2q5cGD8s8rCiHdPBdHalkg4HY3NKL5LkTs623NrLjMvmWMUYlWvM4aEHdrqkTU7WzRiBS0sGkrVaDeItHMRCyorVouIPtAEv1k95XNaO4fAzycJJiCXBj6s-437ydPuHHAxvtDk83/s1600/179.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hi Sweetie. </td></tr>
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So, this is our first blog post in a while. It is hard to find time to write when there is almost no time to think, and as you can read, the writing is not very good under these circumstances either. Such as it may be, it is the best I can manage at this point. I feel vaguely compelled to brightly write something along the lines of 'Hopefully February will be better!', but I am not going to. Like I said, as I learned from my friend Tom, sometimes it is better to have no expectations.<br />
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-46240545416703514182013-12-30T15:51:00.002-08:002013-12-30T17:44:30.549-08:00Christmas 2013<div class="separator" style="clear: both; text-align: center;">
While it is still the Christmas season for another seven days, the big Santa extravaganza has come and gone. Like every year, I had high hopes for Naomi and Christmas this year. I don't know why. Because I can't learn? Who knows. Doesn't matter. Anyway. We decked our halls all out again this year, even more so than last year. Having Lydia does make things better. We know at least one child might like some of the new things Santa leaves under the tree. So we added more decorations. And I tried extra hard to keep the house tidy and neat, so as not to ruin the festiveness with messiness. Housekeeping is not my strong suit, and I don't care. I live by the motto that no one on their death bed ever says they wish they had spent more time cleaning their house and less time being with the people they love and doing the things they love. But, a few times a year I do make a special effort and the yuletide is one of those times. We always decorate the weekend after Thanksgiving and leave our decorations up until Epiphany. I am of the mind that it I am going to go through all the effort decorating takes, I want to enjoy my efforts for as long as reasonably possible. Some day I may be one of those people that leaves the tree up until February. It's a possibility. So. Below is a picture of our TV room. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsLchRxXrvIrTB881g5xHgAK5g1fQi5KGWDzR2-cD6GY3BulhgTc3q7y29ACnAtxMqOEQXbZlUuTvXcKAtFOQcwsvYh7XNzuJTbM-lTuKrQccYUElHkvEvYcaoo3tFt6qYX-BJJ6orEIpI/s1600/016.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsLchRxXrvIrTB881g5xHgAK5g1fQi5KGWDzR2-cD6GY3BulhgTc3q7y29ACnAtxMqOEQXbZlUuTvXcKAtFOQcwsvYh7XNzuJTbM-lTuKrQccYUElHkvEvYcaoo3tFt6qYX-BJJ6orEIpI/s320/016.JPG" width="213" /></a></div>
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We put a small tree in there that Lydia can not reach so we could have her in the main part of the house without having to constantly monitor her relationship with the tree. And there are the our stockings. I needledpointed the three for Rob and the girls. My mother made mine when I was a child. I wanted that room to look extra nice because Naomi and Lydia spend their mornings in there. Naomi watches shows in there while she gets ready for school and Lydia toodles around doing her thing. Also, I wanted it to look nice because we did not put a tree in the playroom like we normally do, due to Lydia's reach-y fingers. See picture of Lydia ready to get in to something below. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9qLHOF1hp619BOfrjfdJaeM3385Nf4T5NSijH6N_bxKJs6Xj95h66zNdXoySmgNPT8pAuYP7_NytjqGLNRnz_knXYaFCRQfJlr-6NHFf1SZFX9W0-1Augw8e27NGA2J_dtaz6EOt9sJny/s1600/021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9qLHOF1hp619BOfrjfdJaeM3385Nf4T5NSijH6N_bxKJs6Xj95h66zNdXoySmgNPT8pAuYP7_NytjqGLNRnz_knXYaFCRQfJlr-6NHFf1SZFX9W0-1Augw8e27NGA2J_dtaz6EOt9sJny/s320/021.JPG" width="320" /></a></div>
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Here is one of Lydia reading a book. She loves books, just like Naomi.</div>
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And she now imitates Naomi by putting her face down on the pages she especially likes. Sigh. </div>
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Normally Naomi loves school and has mostly great days. Her last day of school before break she had a terrible day and has been miserable ever since. We can't find any reason why she has been so cranky. She even wakes up fussing and whining in the morning and has been having at least one screaming tantrum before we even get to breakfast, which is not like her at all. She's an early bird and usually wakes up just delightful and happy to start the day. It's always made it nice. Unfortunately, she is screaming right now while I finish this post. I have a headache and my ears are ringing because I tried for 20 minutes to soothe and comfort her. Nothing works. Finally I just put her on the couch and walked away. She's still screaming. The only difference from 20 minutes ago is that now the screaming is hoarse. I don't think you can imagine how difficult day to day life with Naomi really is unless you are in a similar situation. Or how wearying and wearing it is. I am pretty sure I am suffering from traumatic stress on a daily basis. I wonder how it will affect Lydia. It makes me sad that she doesn't know life doesn't have to be this way. I don't even know how to express how sad it makes me for Naomi. </div>
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Moving on. </div>
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Here Naomi is napping on the couch with her new kitty Marie. She really likes Marie. And at least she is pleasant when she is napping. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1qtWUOqZYpu_hTFs-2t_TC2ctLnN_EkoMVTZQ6WCCh0TErfAhDJCMSWYB2ly6KnkkimlCZ8vRZJDLIFrgYFqXduk_IEGxIXgmnP-HoJy8KpsRSR61z971Jajy4XBHeopxTxoGVO4I98qs/s1600/028.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1qtWUOqZYpu_hTFs-2t_TC2ctLnN_EkoMVTZQ6WCCh0TErfAhDJCMSWYB2ly6KnkkimlCZ8vRZJDLIFrgYFqXduk_IEGxIXgmnP-HoJy8KpsRSR61z971Jajy4XBHeopxTxoGVO4I98qs/s320/028.JPG" width="320" /></a></div>
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Here are some pictures of Daddy and the girls reading together the weekend before Christmas. Naomi as not a huge fan of this joint activity. Probably because Lydia doesn't sit still and tries to turn the pages before Naomi is ready. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY3FPGvv1zsIJuJEDMbqhhUZ32tUza3uTb8lTtjkFe-B6UiS_n8Zay_0UegHvyelyNevXqwjS4sEGJeHtMZ4-LZNuDDE71jMLXWzHOw3acJcyse-tKBhGC9_4oGnJqqk9OY7WdULvCKtqh/s1600/045.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY3FPGvv1zsIJuJEDMbqhhUZ32tUza3uTb8lTtjkFe-B6UiS_n8Zay_0UegHvyelyNevXqwjS4sEGJeHtMZ4-LZNuDDE71jMLXWzHOw3acJcyse-tKBhGC9_4oGnJqqk9OY7WdULvCKtqh/s320/045.JPG" width="320" /></a></div>
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You can see her exasperation. </div>
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We went in to Pittsburgh a few days before Christmas to see Rob's brother Jon, his wife Heather and Naomi's new cousin, Ryan. And Nana and Grampy of course as well. Naomi wore her festive casual Christmas outfit.</div>
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We got a quick picture of the three cousins before someone wanted to get down</div>
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She was in a so so mood. We went for a walk, which she really liked, and then she fell asleep on the floor. We let her nap for longer than we normally do so everyone could enjoy having dinner and exchanging gifts without Naomi yelling. She is afraid of wrapping paper and there was, of course, a lot of that. It didn't feel good to us to do that. It is sad when your child is better off missing out on things that most other people find fun. </div>
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We came home the same day and got ready for Christmas here. We always go to Grandma and Poppa's house for Christmas Eve after we attend the Children's Mass at their church. It is a very small church and if (when) Naomi fusses, cries, or, better, yelps with delight over whatever show we put on for her in church to stop her from screaming/crying people tend to be more tolerant. </div>
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Lydia wore the same dress Naomi wore when she was one. Auntie Laura said she looked like Mrs. Santa Claus' helper. </div>
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Naomi fell asleep right after her pre church bath. </div>
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Which was good, because she is more likely to be pleasant for the evening if she has a nap, but bad beause she fell asleep later than we would have liked and we had to wake her up after less than an hour. Not good. See below. </div>
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Of course once again Mommy worked very hard to make Naomi a beautiful Christmas dress and once again, Naomi did not really enjoy it. The truth is, she hates fancy clothes, so really they are for me. Unfortunately, we were unable to get a good picture of her wearing it. She did look really pretty in it. Maybe some day when she is in a very good mood I will put it on her again and take her picture. </div>
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Below is a picture of Naomi at church. </div>
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Naomi was not bad at church. Lydia was terrible, but in that delightfully annoying way that toddlers are terrible in church. Of course it irritated me at the time, but that kind of irritation is so much better than Naomi's screaming. Which is still going on, by the way. We are at 25 minutes now. </div>
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And then we arrived at Grandma and Poppa's. She needed a show pretty quickly, which allowed us to enjoy eating the meal they prepared for the holiday. Lydia joined in a little too, but she was more interested in ham, fudge, and other Christmas treats. </div>
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This is actually Naomi being cheerful and silly. Which was nice. </div>
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Then we moved in to the living room to exchange presents. Naomi joined us in her wheelchair with her show player. </div>
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She was pleasant for a little while, and then moved in to mega meltdown. I got her out of the fancy dress and in to her new Christmas pajamas (I have learned some things over the years) and tried to give her a juice bubba to soothe her but she would have none of it. She was arching and flailing and starting to ramp up the screaming. It is not easy to hold a five year old body acting that way, especially considering that Naomi has no ability to adjust her position or stop herself from falling or getting hurt. So Poppa swooped in and carted Naomi off to the family room. They listened to their music together and Naomi had a grand time. See below a picture of Naomi being sweet and charming with Poppa. </div>
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Meanwhile, Lydia was busy eating more fudge, stealing the candles out of the windows and doing her best to tear apart the tree. </div>
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So we went home and Santa came while the girls were asleep. He brought Naomi a new platform swing for in her playroom. Her other swing is what is supposed to be the formal living room, but which has been the swing room since we moved here. She can't swing in it while Lydia is napping, which has been difficult because Lydia's naps tend to coincide with when Naomi gets cranky in the afternoon noon and needs a swing to soothe her. So Santa thought this new swing would be a great idea. </div>
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We put the tree we normally put in the playroom in the swing room this year. That room has a door on it, so we can protect it from Lydia. Which has been good, because she is very interested in destroying our tree too. We keep telling her, "Just look." but she doesn't listen. </div>
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We left out some cookies and milk for Santa.</div>
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Naomi's presents other than the new swing were a pillow to recline against when she is on the floor (it has Dakotas, ie ponies, on it) and a new desk and corner chair to help her play with toys. She can sit by herself on the floor, but she has gotten so tall that the toys are too low when sitting on the floor. So this elevates the toys to where she can see and enjoy them more. </div>
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The girls woke up at about their customary times. It was still dark out. Naomi woke up really grouchy. We tried to get her in a good mood with some shows, and some juice bubbas and snuggles with Mommy, Daddy, and Daddy and Lydia. None of it worked, though the pictures below are cute. </div>
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Eventually we decided to just give Christmas a try. Naomi screamed, cried, raged, whined, fussed. We tried to sit her against her new pillow. No postive response. </div>
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Meanwhile, Lydia was curious about everything, exploring her new toys and Rob and I were missing it because we were both trying to comfort Naomi. At some point I just said, "This is dumb. We've waited all these years to have a child who would enjoy Christmas and now we are missing Lydia too." So we put Naomi in the TV room with her shows by herself and went back to just focus on Lydia. Which was the right thing to do. See Lydia enjoying new toys below. That is probably her favorite toy. </div>
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Let me tell you how it felt to put Naomi away in another room all by herself. It felt really bad. It felt like we abandoned Naomi. There was, of course, no point in keeping her in there. She didn't like it and wasn't having fun and she settled pretty quickly once we got her back in her usual spot for morning TV. But it still felt really bad. It felt really bad because we love Naomi and we want her to be part of our family and all of our celebrations. Honestly, how would you feel if your five year old was missing for Christmas? So after we settled we brought her back in to the Swing Room with us and the presents from Santa and the tree. We put her off to the side and got her shows set up. She enjoyed the pony pillow. </div>
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And we proceeded with Christmas.</div>
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It kind of sucked, though. There were me, Rob and Lydia over by the tree being together, and Naomi all by herself off to the side. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8DJhgPjbylk6QqkxHnd7gcTGNx0yhpEbOMTrCtnug7LgKkspN84DDEofyi03tXsKZgSVywUeMNQhoXt_cOX9eOXJQh61lMWPaX0quYx7vG6orcuH0o1QhdG8sEvFshY6jhgF5F9gQ4eY/s1600/Xmas+022.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8DJhgPjbylk6QqkxHnd7gcTGNx0yhpEbOMTrCtnug7LgKkspN84DDEofyi03tXsKZgSVywUeMNQhoXt_cOX9eOXJQh61lMWPaX0quYx7vG6orcuH0o1QhdG8sEvFshY6jhgF5F9gQ4eY/s320/Xmas+022.JPG" width="213" /></a></div>
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She has continued to be mostly miserable since Christmas too. It really isn't like her. She goes through phases for sure, and she is miserable for some part of mostly every day. She screams every day too. But the ratio of miserable to pleasant has been way off. It is hard. It kind of took the wind out of my sails about Christmas. I haven't been trying quite so hard to keep the house nice and tidy. Rob hasn't made nearly as many fires in the fireplace. Not that I'm depressed. I really just want Naomi to have fun, like other children do. I tire of everything being so hard for her, and so hard on her. And us. I know everyone has stories of this or that child having a bad Christmas. Naomi always has a hard time on Christmas. Because I am weak, I, too often, fantasize about what it would be like if tomorrow, somehow, there would be a cure for Naomi and she would all the sudden be able to develop and learn to walk and talk and run and play. For me, it is nice to imagine an alternate world. It's an escape for the daily trauma. However, I realized recently that at age 5 half of her childhood is over. Half of her childhood when children play imaginatively and creatively, that is, is over. So even if, somehow, my dreams did come true, it would still be sad. Here's how it is. We only get one go through in this life. There are no dress rehearsals. There are no do-overs. It's not like next time Naomi might be born healthy. There is only this one time. Naomi has had five years of life and they have been five hard years. She's still screaming by the way. We are at 30 minutes. I am going to try all of my means to comfort her again. God, please, make it stop.</div>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com1tag:blogger.com,1999:blog-8265861613312682909.post-63665973858822516992013-11-24T19:20:00.001-08:002013-11-25T04:54:35.860-08:00Rambling...<div class="separator" style="clear: both; text-align: center;">
These are pictures of Naomi I downloaded for a post I never finished. I figured since I took the time to downlaod them, I may as well post them. She was between six and seven months old in these pictures. Such a sweetie. I really wish we had not been given a fatal diagnosis when she was so young (a week and a half shy of 4 months old.) It made it really hard, no impossible, to live in the moment and just enjoy her. I tried. Rob did much better with that during this time. But I just cried so much. It is very hard when you have to grieve your child while your child is living. It is the way it is though. Any parent in our situation can tell you the same thing. There's just always this black cloud of doom hanging down over everything. It was hard after the initial trip to Children's. But hope springs eternal (I could write reams on that one) so we had pretty quickly settled in to the idea that she would have a static encephalopathy and be with us for a long long time. We even dreamed that maybe she would learn to walk or crawl, or at least use a walker, and have some means of independent communication. But, yes, it would have been nice if I could have just enjoyed the baby pictured below without all the grief getting in the way. It makes me sad. Sad for us. Sad for her. We missed out on so, so much. It even has made us miss out on Lydia. As a parent you want to do everything possible to help your child so you search, search, search for a diagnosis. But sometimes the diagnosis ends up hurting you and your child, such as when the disease that is diagnosed is untreatable and always fatal. We would have been better off not knowing. We couldn't do anything to help her anyway. You really want to know, until you do, and then you just want to be able to forget it. Interestingly, I have been much more able to handle the difficulties of Naomi's situation recently. For me, having Lydia made it easier to to enjoy knowing Naomi as she is. When Lydia walked, it didn't hurt so much that I never saw Naomi learn to walk. It still hurts me for Naomi's sake, but no longer for mine. Does that make sense? I only have to grieve for what Naomi misses now, whereas before I had to grieve both what she misses and what I missed as a mother. For Rob, though, having Lydia has made dealing with Naomi's condition more difficult, and so he has been having a very difficult time with it all recently. It is sad. Always a shadow. I've said it so many times: I just want to walk in the sun again. We never will, though. That's the other thing that is hard. Rob and I are solidly middled aged now, approaching 40 in fact, and we have both been going through midlife crisis kind of stuff. When you are young you have your whole future spread out in front of you. Unknown. Exciting. So much limitless potential. Bright skies, wide horizons. All that stuff. And you are working hard to get everything all set up...get the education, get the training and experience, save, work, plan, dream. Now, though, the future is here. And it kind of sucks. It's stagnant. Naomi is stagnant. She hasn't regressed, but she hasn't progressed either. And we are thankful that she has not regressed, but it's kind of a shitty thing to have to be thankful for. Ohhh....my daughter hasn't hit a new milestone since she learned to sit at 16 months old. She's 61 months old now. Awesome! And it is! Because she could have lost that skill and she hasn't. But that sucks! Sometimes I get tired of having to be grateful for shitty things when it comes to Naomi. </div>
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It's not all bad, though. Naomi and Daddy has a great day today. They did most of their favorite things...horseback riding with Dakota, shopping, swimming. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz0ssrdiDt74c3lKM-jBRrHsTWTo57I1FWMrHOavtTkntxT3_6M6QYr-rpxlltuFVl6f3l7FxQ-xAPMCeFWEw7VVngNnt2nZqK5dW0UQEpyRuDvSmrf8qSj5MazOeV12AzDD0Gpp7WhpNY/s1600/IMG_2509.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz0ssrdiDt74c3lKM-jBRrHsTWTo57I1FWMrHOavtTkntxT3_6M6QYr-rpxlltuFVl6f3l7FxQ-xAPMCeFWEw7VVngNnt2nZqK5dW0UQEpyRuDvSmrf8qSj5MazOeV12AzDD0Gpp7WhpNY/s320/IMG_2509.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We had a screened porch at the last house. We spent lots and lots of time out there. She loved it. We are hoping to put a porch on this house this spring. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">On the porch again. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiArbBhHylluylOBFYY33mhKsuTdavagH5TFPsGkww8X7dPUiYEF4kj5Rd3sSentUQq6dyIPm0xvKQ1BVjhyphenhyphenXzsyLlPZDh6138wTohC8Dxz2rX5Zq1_Gt4Vbmr-JUSXXmSTOTe4M7X5s44c/s1600/IMG_2596.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiArbBhHylluylOBFYY33mhKsuTdavagH5TFPsGkww8X7dPUiYEF4kj5Rd3sSentUQq6dyIPm0xvKQ1BVjhyphenhyphenXzsyLlPZDh6138wTohC8Dxz2rX5Zq1_Gt4Vbmr-JUSXXmSTOTe4M7X5s44c/s320/IMG_2596.JPG" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Trying to get her to use her hands instead of just her feet to jingle the bell. The paper attached to the tripod has black and white checkerboard printed on it, for visual stimulation. I had that kind of stuff everywhere for her. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Her first eye patch. We still patch. She still doens't like it.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtHK6aL3iQ-EYTm5R5zkrg8lZQnRhOymVakj190mUL6ovWgHWOwkPoYOIgRaa7qk-41L551DC5gTx83f0KVeJgGohczHgNsfAyp4wSqcD1VcKKi0bXB0r6twEqCb3I8e_hLZ0HwSCG32RV/s1600/IMG_2565.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtHK6aL3iQ-EYTm5R5zkrg8lZQnRhOymVakj190mUL6ovWgHWOwkPoYOIgRaa7qk-41L551DC5gTx83f0KVeJgGohczHgNsfAyp4wSqcD1VcKKi0bXB0r6twEqCb3I8e_hLZ0HwSCG32RV/s320/IMG_2565.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love her little face. Still love her little face. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSv0QYkQwiwFGO2PeOHoAc_eUEpfG0flgQQEduQvxCb4CEeXDUl6Pq6Xq-7WEHhB_sC2h2uYb46KIROQ2QK9rpB2SdKudcJuRG-vumFWJDFopq0DxwTBXAH89E9nYcIFvuR0BocbkGexLr/s1600/IMG_2554.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSv0QYkQwiwFGO2PeOHoAc_eUEpfG0flgQQEduQvxCb4CEeXDUl6Pq6Xq-7WEHhB_sC2h2uYb46KIROQ2QK9rpB2SdKudcJuRG-vumFWJDFopq0DxwTBXAH89E9nYcIFvuR0BocbkGexLr/s320/IMG_2554.JPG" width="320" /></a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9qjwLiz4FqhFkvnb_0frVu9RWnq608xZ4uFn9xW8NImBrtv9sTWdsEW0sQVJZdqdqjqOSA2qVFHHJnLezRXLbe0RCWjaMZr-DYyWXhJ9HYResw7FmsTiPECLnKrLT2DqfFCAla-Ylv0zb/s1600/IMG_2615.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9qjwLiz4FqhFkvnb_0frVu9RWnq608xZ4uFn9xW8NImBrtv9sTWdsEW0sQVJZdqdqjqOSA2qVFHHJnLezRXLbe0RCWjaMZr-DYyWXhJ9HYResw7FmsTiPECLnKrLT2DqfFCAla-Ylv0zb/s320/IMG_2615.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On the porch again. We had most all meals out there. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCG4bnRoJibiix-eSlnhJSF4ZloubU4J0IkBxmy5Da2AWvyH1nW7HMQs7k1oHG17r_3MjrcK_chuyUpumySHCYWZGiWGZwRCQFSOQWJRZVqXNTc8lZFCKJ8YaZrNQN_dfyxr-5XNxkKlll/s1600/IMG_2632.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCG4bnRoJibiix-eSlnhJSF4ZloubU4J0IkBxmy5Da2AWvyH1nW7HMQs7k1oHG17r_3MjrcK_chuyUpumySHCYWZGiWGZwRCQFSOQWJRZVqXNTc8lZFCKJ8YaZrNQN_dfyxr-5XNxkKlll/s320/IMG_2632.JPG" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyfGHjez_Nk7UwbNbPzRryRo58cjeof40qKcMq46LZRWyJ9lEfnumcD6T_E2H_Vfrk4wSz4nW4NTYtM4CVkOcccqgnVTvbYHWzWg6fekXDeI4tv6wuZgB5BAvCJZnMzUdLnIxYYGlXjywS/s1600/IMG_2641.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyfGHjez_Nk7UwbNbPzRryRo58cjeof40qKcMq46LZRWyJ9lEfnumcD6T_E2H_Vfrk4wSz4nW4NTYtM4CVkOcccqgnVTvbYHWzWg6fekXDeI4tv6wuZgB5BAvCJZnMzUdLnIxYYGlXjywS/s320/IMG_2641.JPG" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">She had learned to windshield wiper her hands over her linking letters. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj58VRPMGQhsJJsqjvc3tg2MnGgCc24QmhzLk9YSRPWVe0TsVnD2muRG9KQAhdI_ahI6pShvkt-pGaqjUGBVeOGcsj4x_0yx3RxSlG3IEmgmKKjx_tbmajEh8uCLrOthiVTKsz3blnMtpRz/s1600/IMG_2648.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj58VRPMGQhsJJsqjvc3tg2MnGgCc24QmhzLk9YSRPWVe0TsVnD2muRG9KQAhdI_ahI6pShvkt-pGaqjUGBVeOGcsj4x_0yx3RxSlG3IEmgmKKjx_tbmajEh8uCLrOthiVTKsz3blnMtpRz/s320/IMG_2648.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She loved it! She could finally play. She made a lot of progress with her hands for a long time. Well, for about a year. Then the shit hit the fan. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_9MjBB4Pkls5xFwUQTWObpzW84XxKlD1ckQJdG4DvvK5bgIj1sE407OHDjJ8kEo42mJcPPsACErJmxdKGM1f4WVCcM2eMeJzU8DFaxqOi9l0iDrMDMH51l0wZQv54rX4vxdZAWIq0ARk0/s1600/IMG_2686.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_9MjBB4Pkls5xFwUQTWObpzW84XxKlD1ckQJdG4DvvK5bgIj1sE407OHDjJ8kEo42mJcPPsACErJmxdKGM1f4WVCcM2eMeJzU8DFaxqOi9l0iDrMDMH51l0wZQv54rX4vxdZAWIq0ARk0/s320/IMG_2686.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love you.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3kyZ921-Gio_lnp8Jd1XJQA_lIuNIbBqZLQKSg3AD0BZA7aLTw7WufVW0ip4WXD8VaCFKLrbuunotpP3b1yznvrUJMLnp3MTePCKLmD3Dxg7tM0g1zH3dD_fP_soJQCYfqitH4Q2vBH36/s1600/IMG_2715.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3kyZ921-Gio_lnp8Jd1XJQA_lIuNIbBqZLQKSg3AD0BZA7aLTw7WufVW0ip4WXD8VaCFKLrbuunotpP3b1yznvrUJMLnp3MTePCKLmD3Dxg7tM0g1zH3dD_fP_soJQCYfqitH4Q2vBH36/s320/IMG_2715.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We had nearly daily photoshoots. Because as a first time mother I was enthralled with my baby, and also because I had a frantic need to document her daily. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8jLpluzCpKe4lpi-6YVQf5XRXvqpvVVpfPmCFNvWqZByGSy16lMwWqjRSRmOpNUU74d3Syuoe0dSGXlvpqRmD0DP2WQk-9RfOoAEFaQTZUFe-sHARF6j3-FLlsrS8fBXgFLFWhjKMXqt1/s1600/IMG_2735.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8jLpluzCpKe4lpi-6YVQf5XRXvqpvVVpfPmCFNvWqZByGSy16lMwWqjRSRmOpNUU74d3Syuoe0dSGXlvpqRmD0DP2WQk-9RfOoAEFaQTZUFe-sHARF6j3-FLlsrS8fBXgFLFWhjKMXqt1/s320/IMG_2735.JPG" width="213" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHM1Va0Q3uCRs-mnNl7JznXZBN7v1TOoTCfsM4Y1-tSa5iApTE68fB92oseRfPv7sLZiU6Goqw-jodC9mcVSo2bddoZE0vbZE7ijsJK4ZNjch67rO0IDIdd6BHDCoJye00BgjBgKILrb3q/s1600/IMG_2742.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHM1Va0Q3uCRs-mnNl7JznXZBN7v1TOoTCfsM4Y1-tSa5iApTE68fB92oseRfPv7sLZiU6Goqw-jodC9mcVSo2bddoZE0vbZE7ijsJK4ZNjch67rO0IDIdd6BHDCoJye00BgjBgKILrb3q/s320/IMG_2742.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG0p80whESZw5gYi3uWvOcMu8Fc5zX4T6cxyGtBR2wUaXJ74qCtHKnexzskXD3SDggtRH5mmnmr0lB6H6pBATicZVJEKWLu5QOpYJ-llw7pr4F9wiK3Nw80h9EbATVBz5HnJjzPSAabo-M/s1600/IMG_2749.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG0p80whESZw5gYi3uWvOcMu8Fc5zX4T6cxyGtBR2wUaXJ74qCtHKnexzskXD3SDggtRH5mmnmr0lB6H6pBATicZVJEKWLu5QOpYJ-llw7pr4F9wiK3Nw80h9EbATVBz5HnJjzPSAabo-M/s320/IMG_2749.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiling to my voice.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihIxIhLvtSTifjqw7UbJukaLsdAshrV8uRMVEEa3TJEBd-RUdWgHKkFsKb_YdpJzcGBGlv_xl8nBk00CJdyi10auy1RsmLC2BAVvg26P2v7Vkkiq4ijR-pwEgP6bPx9GE8vj_pttNE1_lA/s1600/IMG_2755.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihIxIhLvtSTifjqw7UbJukaLsdAshrV8uRMVEEa3TJEBd-RUdWgHKkFsKb_YdpJzcGBGlv_xl8nBk00CJdyi10auy1RsmLC2BAVvg26P2v7Vkkiq4ijR-pwEgP6bPx9GE8vj_pttNE1_lA/s320/IMG_2755.JPG" width="213" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6oedsEHY8oJjjnVKHa2IYC_iqwIOpdv4SnK6juae2CG56_Zxzfqn2oJPIfEhdKR3sqI2bxvnJLthZYxCI7IAdzdETjZ9Ff3W_BhTNJSgM3CqV0BhzyH21C-x81nAouTIfDmSP37broiwQ/s1600/IMG_2782.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6oedsEHY8oJjjnVKHa2IYC_iqwIOpdv4SnK6juae2CG56_Zxzfqn2oJPIfEhdKR3sqI2bxvnJLthZYxCI7IAdzdETjZ9Ff3W_BhTNJSgM3CqV0BhzyH21C-x81nAouTIfDmSP37broiwQ/s320/IMG_2782.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaDcQ_9eGMG5-IW2RdmxLMdNTXgYKt0olbEq4E8cZxW6skRqfI17jpLcjQUemF2zIu6chh0EhUwUFODj872DQKqcGEB-B0P4VzgqXUUCuZUIX9W_522Dj0_I9OHlarX02yDvMUzYbiMyxE/s1600/IMG_2785.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaDcQ_9eGMG5-IW2RdmxLMdNTXgYKt0olbEq4E8cZxW6skRqfI17jpLcjQUemF2zIu6chh0EhUwUFODj872DQKqcGEB-B0P4VzgqXUUCuZUIX9W_522Dj0_I9OHlarX02yDvMUzYbiMyxE/s320/IMG_2785.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She was facing her favorite big windows. She loved them. Sometimes I feel bad that we moved away from that house and the things in that she loved. But it was part of Before and I had such a strong need to get away from all things from Before.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieKIAj0H3cGW5fAiLkBH1ulJjlNCA6K-eT2z29AO6XoMKAmc-3Pa3n1vfAgg4oEOkIk4PkitZHzWUHIJuT4hU2yl-m23UtTkBRHzriMsABGwmGyk7YKhHmln9d8zVwAgCoz4AoM-eQMwLu/s1600/IMG_2850.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieKIAj0H3cGW5fAiLkBH1ulJjlNCA6K-eT2z29AO6XoMKAmc-3Pa3n1vfAgg4oEOkIk4PkitZHzWUHIJuT4hU2yl-m23UtTkBRHzriMsABGwmGyk7YKhHmln9d8zVwAgCoz4AoM-eQMwLu/s320/IMG_2850.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjssEeCNPbHHVU7rUFfhW-qMX8PJ58XSUK6-iwz8IsxuNgTOim9sYjH20m-6iuWAwoom0H1uuTuCJKbPgS2Em3up4sxbU2zjzBbgz8txGMo5krn4jM7J0oTeqJn8D-yl5z0El2uokdIQP1e/s1600/IMG_2874+(1).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjssEeCNPbHHVU7rUFfhW-qMX8PJ58XSUK6-iwz8IsxuNgTOim9sYjH20m-6iuWAwoom0H1uuTuCJKbPgS2Em3up4sxbU2zjzBbgz8txGMo5krn4jM7J0oTeqJn8D-yl5z0El2uokdIQP1e/s320/IMG_2874+(1).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These are some of our favorite pictures from this time. They watched all the Pens games together. Sometimes she still does let Daddy have the Pens game on. Usually after her bath. Baths put her in such a good mood, so she is more tolerant of not getting everything she most prefers. </td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com1tag:blogger.com,1999:blog-8265861613312682909.post-70728972137032893892013-11-13T19:09:00.002-08:002013-11-13T19:09:34.272-08:00A Big Last Few Weeks<div class="separator" style="clear: both; text-align: center;">
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We have had a big last couple of weeks! Two birthdays, Halloween, and meeting Noah!</div>
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Naomi's birthday was 10/22. She turned five this year. We had a low key birthday on the 22nd with Naomi going to school that day. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNA3iopNyP61LCHAN8T2Z3BMsiHFz4dgGBhHy2tc2m1sRIUiWuwrHA4P6KaE8edcEHjl8Xw0YuJySEk1STlRbKikJeTIZik82amzxVOu3t7_bSg3OuqL0BBmJ30rYscuh_UUoHO-DIwggK/s1600/049.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNA3iopNyP61LCHAN8T2Z3BMsiHFz4dgGBhHy2tc2m1sRIUiWuwrHA4P6KaE8edcEHjl8Xw0YuJySEk1STlRbKikJeTIZik82amzxVOu3t7_bSg3OuqL0BBmJ30rYscuh_UUoHO-DIwggK/s320/049.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi in the morning before school on her birthday</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR6NcQUmXHa5Zj4mWBN2gNlSeJO6UTH7cKx-tQR8BqP3zjpellQ7VHS9g13QAwyPaygc7P67-Ah7k7VemzhQRoOfww31XfezFD2bCuLUA9xorVMduDYEpKADORl68FVuo_qKp_UxJOlH3F/s1600/008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR6NcQUmXHa5Zj4mWBN2gNlSeJO6UTH7cKx-tQR8BqP3zjpellQ7VHS9g13QAwyPaygc7P67-Ah7k7VemzhQRoOfww31XfezFD2bCuLUA9xorVMduDYEpKADORl68FVuo_qKp_UxJOlH3F/s320/008.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi receiving a card from Mommy and Daddy - she clearly has reservations about getting older</td></tr>
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The big day was on Sunday October 27! We had a huge party for both girls at our house. On Friday, the people came to set up the tent and the bouncey castle. Preparations were made all weekend for the festivities. We took advantange of having the bouncy castle for a weekend by inviting the cousins over for a sneak preview. We also thought it would be good to try the kids in it without all of chaos of the party. Here are some pictures.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXf9tphEkl2ymYqTi75q2SLvt7d-jxBuivjv4-5maWv7ca7nMfPQ_QVe27sNT8_8kipYIs1Nxc33GSkCC05nCYl_hAfoqNii7jiNxgmIdH5SWs2klvxwzhcigN_cU4QuMAdw0yeVpxKDpG/s1600/025.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXf9tphEkl2ymYqTi75q2SLvt7d-jxBuivjv4-5maWv7ca7nMfPQ_QVe27sNT8_8kipYIs1Nxc33GSkCC05nCYl_hAfoqNii7jiNxgmIdH5SWs2klvxwzhcigN_cU4QuMAdw0yeVpxKDpG/s320/025.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with Auntie Sarah</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitSwQFrRiZSPv4KFq6Xx3TWwadHmY4lJoI1qhNqrVgnWEq8Xrc1HS7o0EMm2xZuM_LxkX1SYnYo9xFeqx00uCvSzeD_N4Ci9zesKAY_tMcwZTp9dO-hEbc2HvskjMfHTGvMMJ60hnzWhim/s1600/028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitSwQFrRiZSPv4KFq6Xx3TWwadHmY4lJoI1qhNqrVgnWEq8Xrc1HS7o0EMm2xZuM_LxkX1SYnYo9xFeqx00uCvSzeD_N4Ci9zesKAY_tMcwZTp9dO-hEbc2HvskjMfHTGvMMJ60hnzWhim/s320/028.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi was mostly unimpressed</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWXvKx1PaTgLO3m4NcXlaFofWrEkAAYKsTEVWClO4HvvQ5bsaq9EAK2W346epcd3WQ6rfQPLY_yh5AprA34ns2ApUnae6kZuRwMxp_ByMVKzyzcCM8rWgqX4Zv6cJOu5oJbAzdLEqQsZkH/s1600/034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWXvKx1PaTgLO3m4NcXlaFofWrEkAAYKsTEVWClO4HvvQ5bsaq9EAK2W346epcd3WQ6rfQPLY_yh5AprA34ns2ApUnae6kZuRwMxp_ByMVKzyzcCM8rWgqX4Zv6cJOu5oJbAzdLEqQsZkH/s320/034.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A polka dotted monster made her way in.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiqSv5-l2AZP3D_0DCiZxvi3pT9qNKpz8MLqoa0jrSRk8KlqJC6PovgSCgu1gCVI4Z99xO92a4IJH18ea9yBoIPYiQMwax0huMZyk5vXHebcEH5ANi9emlDwQOhhGlJqXR5OJuP8MzODqU/s1600/035.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiqSv5-l2AZP3D_0DCiZxvi3pT9qNKpz8MLqoa0jrSRk8KlqJC6PovgSCgu1gCVI4Z99xO92a4IJH18ea9yBoIPYiQMwax0huMZyk5vXHebcEH5ANi9emlDwQOhhGlJqXR5OJuP8MzODqU/s320/035.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was right up Lyd's alley</td></tr>
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Sunday was the big day. We invited 175 of Naomi and Lydia's closest friends and family for an outdoor birthday bash/fall festival. We wanted to celebrate Naomi making it to 5 years old and celebrate Lydia being here at all and making it to 1. The party started at noon, and the kids (there were over 60 who came) were treated to the bouncy castle; numerous games like corn hole, ring toss, bean bag toss; a minature pumpkin painting center, and a few special events. We also wanted to raise money for Batten's disease and so in lieu of gifts we asked for donations. The food was Oktoberfest style - kielbasa and sauerkraut, meat pies, meat wrapped pickles (sounds gross - super delicious), mac and cheese, soft pretzels, spaetzel, apple crisp, hot chocolate (temp was about 45 and windy), cider, beer. Naomi started her big party by falling asleep<br />
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<tr><td class="tr-caption" style="text-align: center;">Cousins Grant and Margot playing ladder golf</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy32FQpYBXXK-gIguQPythCTPnb-KI9bQIVyBUjD08xUqWYxpkEy7Nnhc0-HCcLCMlmTg9HJjvnHh5JWCDiKur85pfiBlGuONGwZ7MnpWQpbqWbuiUT1D44MLuaC_m5Xp0qnF8scUw2_iK/s1600/IMG6216.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy32FQpYBXXK-gIguQPythCTPnb-KI9bQIVyBUjD08xUqWYxpkEy7Nnhc0-HCcLCMlmTg9HJjvnHh5JWCDiKur85pfiBlGuONGwZ7MnpWQpbqWbuiUT1D44MLuaC_m5Xp0qnF8scUw2_iK/s320/IMG6216.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace and Grant at the pumpkin table</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia monstering around the yard - We tied a balloon around her to keep tabs on her</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">In the tent line for food</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU0rF0IN4Gl5M7w0JVrypYrJ3DTA0sTKTqO2iCqpoeojwFuqpSLHyzL31gjbw6-duMriB7jXcUygq_8TGCxKjJnoLwPv79iQ6vGTZZJgCmXA_ICjFNsL4VBC8O8OiPjtEOKc3brhWBC-Gi/s1600/497.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU0rF0IN4Gl5M7w0JVrypYrJ3DTA0sTKTqO2iCqpoeojwFuqpSLHyzL31gjbw6-duMriB7jXcUygq_8TGCxKjJnoLwPv79iQ6vGTZZJgCmXA_ICjFNsL4VBC8O8OiPjtEOKc3brhWBC-Gi/s320/497.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia moves pretty quick</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhijPXPbv26fUqzTw1xRf2_AlQ0F_0kz2m2FxykBQeOX9VZIKpz4UFl4Ks1uOh-C52_qw-0nlynkFwK2rAe-Mc-Hcb5OAqLbPw8OsNgNbOBCtuNMsi9_YPgJymWSA70X7maAYGEIDqkNXf5/s1600/IMG6247.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhijPXPbv26fUqzTw1xRf2_AlQ0F_0kz2m2FxykBQeOX9VZIKpz4UFl4Ks1uOh-C52_qw-0nlynkFwK2rAe-Mc-Hcb5OAqLbPw8OsNgNbOBCtuNMsi9_YPgJymWSA70X7maAYGEIDqkNXf5/s320/IMG6247.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi's buddy Allen David Garman of Allen David Garman - Beneficiary on Facebook, with Amberly, Julie and Allan Garman</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRsSB6GaiUW1n81zzfuPEct83l7I4OUYnxFQseBT7YrYo8nHpPVr_86S7myFVWcXTcXMxapdXQpXXAIRMZBsij4UtKZMYWZmVKzzoPqKyfg7xIk9Gv2Il-m5q52uAYOEbo0Ti_aKYSAB_Z/s1600/IMG6251.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRsSB6GaiUW1n81zzfuPEct83l7I4OUYnxFQseBT7YrYo8nHpPVr_86S7myFVWcXTcXMxapdXQpXXAIRMZBsij4UtKZMYWZmVKzzoPqKyfg7xIk9Gv2Il-m5q52uAYOEbo0Ti_aKYSAB_Z/s320/IMG6251.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These are the Deckers of A Match Made in Evan on Facebook</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5TByleRH5sJ3MOXYvYMtnJlHQb5bDBcsbjpwoyFCXBmy0DnwNs_RAaIZWbcZ9HPXHuidTIpvprGcUux6uPP8-m0_HtDCa19gBJ5R2SOph9BwhRnyD7L9DBN5F5HwVk3p4R5J-o-LmauZe/s1600/494.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5TByleRH5sJ3MOXYvYMtnJlHQb5bDBcsbjpwoyFCXBmy0DnwNs_RAaIZWbcZ9HPXHuidTIpvprGcUux6uPP8-m0_HtDCa19gBJ5R2SOph9BwhRnyD7L9DBN5F5HwVk3p4R5J-o-LmauZe/s320/494.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lyds with Cousin Grace - Get older Cousin Grace so you can babysit!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6tT3PI2RvNCyyd6LrB20bMvqrFb9SUgwW1apVqN199PaVLL137dqrrQrgu5YCiax7p-cR949hTdjJKWhsDVJFa4zuOkFuUe7vUG4HARURDWmKuZuY2a12RtVCRl4_dWpyurWuR5zPKHYA/s1600/496.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a>
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The first big event was the magician. About 30-40 kids gathered around and he performed tricks and made balloon animals<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgPE1sJ4b8ahxaA8JVR9SBbU31k8KXd0XZw4UffY_DLGCz4ohKS-3B_dJjVuQx0VtGT6DHA9cXCA3NOtXY1MjhZmbNf1V1sGPUFEWA7PGPDMWxtX9tpm0WXN9jR4ESoyzGCdwKX4JZrQtX/s1600/IMG6254.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgPE1sJ4b8ahxaA8JVR9SBbU31k8KXd0XZw4UffY_DLGCz4ohKS-3B_dJjVuQx0VtGT6DHA9cXCA3NOtXY1MjhZmbNf1V1sGPUFEWA7PGPDMWxtX9tpm0WXN9jR4ESoyzGCdwKX4JZrQtX/s320/IMG6254.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for the magician</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDW2297NC2IuYg5PCQg3CSVrTTX9CwN8rAySaGJbW8Hwj5o2nw_gPOkUbo0DhKTKNPHDO7tudHOdHaP1FcPnoKs9Smh04ryWI1C7y6Dvskp-g_tnJYRt2pgQeXRmt9q0dHNLJBrdmQTLM0/s1600/IMG6293.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDW2297NC2IuYg5PCQg3CSVrTTX9CwN8rAySaGJbW8Hwj5o2nw_gPOkUbo0DhKTKNPHDO7tudHOdHaP1FcPnoKs9Smh04ryWI1C7y6Dvskp-g_tnJYRt2pgQeXRmt9q0dHNLJBrdmQTLM0/s320/IMG6293.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with Papa. She is not a fan of magic</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDzz9g-vRDGNk9IzL2gRknABYe_ge4iqW9ETBJ_ddpkKc_cunukecxNG5SKgkdXwLgUeFiK017DY-i2IOG0bNjgA7w0bboQiNF6pEsVMXv3O6wyOWdzgMijfEluxIYMWfpN1Zts6WS6K_Z/s1600/IMG6268.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDzz9g-vRDGNk9IzL2gRknABYe_ge4iqW9ETBJ_ddpkKc_cunukecxNG5SKgkdXwLgUeFiK017DY-i2IOG0bNjgA7w0bboQiNF6pEsVMXv3O6wyOWdzgMijfEluxIYMWfpN1Zts6WS6K_Z/s320/IMG6268.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lyds is game for anything</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf4uyeSqhJnIk34w1gvB1OVz2NuF4aFkxTMCIQhleeBmdqX-9Ci4zSaO2cONQMqWM419CviP2gERZElSMUkk6tNluMEzfhultVLFlQ9cl4jjeDWPM28sHhlWUc0I3T791uhp75trT9n2Dy/s1600/IMG6297.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf4uyeSqhJnIk34w1gvB1OVz2NuF4aFkxTMCIQhleeBmdqX-9Ci4zSaO2cONQMqWM419CviP2gERZElSMUkk6tNluMEzfhultVLFlQ9cl4jjeDWPM28sHhlWUc0I3T791uhp75trT9n2Dy/s320/IMG6297.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lyds with Aunt Jerry. Jerry was our savior on vacation. She is excellent at wrangling our children</td></tr>
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The next big event was the treasure hunt in the hay organized by Nana and Grampy Caughey. They also brought all of the free standing games. It was pure mayhem with the little kids going first and the big kids going second.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKQDKK8AqrXGBrxbXcjtgO8fO55IwpmZthcNcZuyKC6zmmkVrszddteyQn9WW4wiz-O5Yci6JDwpCwNMbmL2kzOTEWSlQGk_StYVPBgb3HJ4jJ2Kp0YhrHJPePt2afNEqv7ic0faV2ZQhE/s1600/IMG6299.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKQDKK8AqrXGBrxbXcjtgO8fO55IwpmZthcNcZuyKC6zmmkVrszddteyQn9WW4wiz-O5Yci6JDwpCwNMbmL2kzOTEWSlQGk_StYVPBgb3HJ4jJ2Kp0YhrHJPePt2afNEqv7ic0faV2ZQhE/s320/IMG6299.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Free for all in the hay</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHZrl3ky8iZqThtS34T3gPYv9nM0wETyYmf75Or2R0aniZ-cgbwFUp92f7wY7uteFC86EXqpf3qG5LI2b51802yOiKd3DbBQF48d_eUn580sAPGBytjeTsXUbfxc0t3mYwznW79P63FIZl/s1600/495.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHZrl3ky8iZqThtS34T3gPYv9nM0wETyYmf75Or2R0aniZ-cgbwFUp92f7wY7uteFC86EXqpf3qG5LI2b51802yOiKd3DbBQF48d_eUn580sAPGBytjeTsXUbfxc0t3mYwznW79P63FIZl/s320/495.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The big kids</td></tr>
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The last big event was Naomi's favorite. Her best horse friend Dakota came out with his friend Ashley to give the party goers pony rides!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikBJO62wsiFAt8do2ZHlYWToqWotDsUTNAQipz5s_rSE9Wf82QyDRQb7uwBmByF0vZ9gTRmcJQAD6UIPuV1v90-n2J4TOfdudnisvOkO3OjHEvgQmSYzsZfd4zYRjMkRpAHuYYABsuh2fP/s1600/IMG6327.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikBJO62wsiFAt8do2ZHlYWToqWotDsUTNAQipz5s_rSE9Wf82QyDRQb7uwBmByF0vZ9gTRmcJQAD6UIPuV1v90-n2J4TOfdudnisvOkO3OjHEvgQmSYzsZfd4zYRjMkRpAHuYYABsuh2fP/s320/IMG6327.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi waiting in her pink helmet. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLRfqGbN2FYww43c9VSayZb3xzGrRc-YfFaMzFKBWj63ctZ7qrsOZuoCHF4ykJls8QWjKP8hGJ4gITVPDHPfalcn8ip5ktizMZuJt7E-LJvYBNPvt9p3Ud-7ZTiIVIH6OpJQVuohztTWkw/s1600/IMG6332.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLRfqGbN2FYww43c9VSayZb3xzGrRc-YfFaMzFKBWj63ctZ7qrsOZuoCHF4ykJls8QWjKP8hGJ4gITVPDHPfalcn8ip5ktizMZuJt7E-LJvYBNPvt9p3Ud-7ZTiIVIH6OpJQVuohztTWkw/s320/IMG6332.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi getting placed on her good friend Dakota - Where did Daddy's hair go?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQx9JagLgGiGqOzdFgr3it4r76sqEJxAckMcnFNxeZ1IUDLTetBFsldpuQGA8ifP45B6Rg4zvmkB8G2_KANPeKRi6iI8_bygr-27Xs5S_6qvBbmmp8aDS5UoUJc34ASOnKnul9A9yfNMvH/s1600/IMG6324.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQx9JagLgGiGqOzdFgr3it4r76sqEJxAckMcnFNxeZ1IUDLTetBFsldpuQGA8ifP45B6Rg4zvmkB8G2_KANPeKRi6iI8_bygr-27Xs5S_6qvBbmmp8aDS5UoUJc34ASOnKnul9A9yfNMvH/s320/IMG6324.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi outside</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLtn685U4vB4pQqBGv3MU6ZbKIfpHWUB30aE03zb5fR3qjxpiIRH6mam-0jwWGcXPsAyrWzOaQ9_RqxZ05VZy7nzGzJmH_MZ56JzHDUm-iNbk91KDekHvP9Bz9Qe1KsyB89bdWeAY2frZ/s1600/IMG6336.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLtn685U4vB4pQqBGv3MU6ZbKIfpHWUB30aE03zb5fR3qjxpiIRH6mam-0jwWGcXPsAyrWzOaQ9_RqxZ05VZy7nzGzJmH_MZ56JzHDUm-iNbk91KDekHvP9Bz9Qe1KsyB89bdWeAY2frZ/s320/IMG6336.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy with Lyds and Katie Cardinal, who is responsible for Mommy and Daddy being married, and therefore also responsible for the existence of Naomi and Lydia. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1V1hoWeENT6BzVWpae55RecelP1aSeE2niTPJlPAFR0ypCogycgpb_7k80Wh7GdeFXBvTdl60NQnNYFC8qEV2_hJ4RaZy5WUBxJUfZzYuXnLInOhTAm1JKw3YirSIw-NCw8r_Svt3qvFO/s1600/IMG6317.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1V1hoWeENT6BzVWpae55RecelP1aSeE2niTPJlPAFR0ypCogycgpb_7k80Wh7GdeFXBvTdl60NQnNYFC8qEV2_hJ4RaZy5WUBxJUfZzYuXnLInOhTAm1JKw3YirSIw-NCw8r_Svt3qvFO/s320/IMG6317.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia was not big enough to ride</td></tr>
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We had a great time celebrating the birthdays with our friends and family. The time went so fast. We did not ask for presents, but rather donation to Naomi's foundation and we raised over 3000$ for Batten's disease research. <br />
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With the extravaganza in the books, we settled in for some more mundane holiday tasks like pumpkin carving. A funny story - Daddy learned that you cannot keep a jack o lantern on the kitchen table. I carved the pumpkin on 10/28 and thought it looked so nice that I would keep it inside. However, on Halloween we came back from visiting/tricks or treats and I noticed that hair had grown in the jack o lantern's eyes - well it was mold. I gave Naomi a bath and in the 45 minutes I was gone the pumpkin had essentially melted into a puddle on our kitchen table!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm6_lzSEvIN7NJDcBIVJAMMNUjYVjRPvfu3NJPuk6RD5EYA6DSJiC6dOi3nNEmdgAeiaHY0mquPDd_VfADDhfqsxRETP2unRNBSari5bm2SZJa_vXGEywbgIcZi1JkiPkbouRD5rH6SynU/s1600/066.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm6_lzSEvIN7NJDcBIVJAMMNUjYVjRPvfu3NJPuk6RD5EYA6DSJiC6dOi3nNEmdgAeiaHY0mquPDd_VfADDhfqsxRETP2unRNBSari5bm2SZJa_vXGEywbgIcZi1JkiPkbouRD5rH6SynU/s320/066.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Lydia helping daddy carve the pumpkin</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOih6wovvs83d0_J511QY_xRRK6yaXnoZL2iMxTKpczDXJhCqtpORe3DPKag5UN3vJwqigLaP2Yxv3JfPcM-LAfyuXoDvPaTaL26vgUx8XPu3eW2kV6VGUTNsx4STrxvGzgjjhelTYms38/s1600/075.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOih6wovvs83d0_J511QY_xRRK6yaXnoZL2iMxTKpczDXJhCqtpORe3DPKag5UN3vJwqigLaP2Yxv3JfPcM-LAfyuXoDvPaTaL26vgUx8XPu3eW2kV6VGUTNsx4STrxvGzgjjhelTYms38/s320/075.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The girls are ready for Halloween</td></tr>
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A few days after the big party we met up with Noah Coughlin in Bedford. Noah just completed his second cross country run to raise awareness for Batten's Disease. It was great meeting someone in person who has such a heart for kids afflicted with this terrible disease. Like all rare diseases, Batten's isn't on anyone's radar except for the families of those suffering from it, and the doctors who are trying to treat them. We need all the awarenes we can get! Awareness brings research dollars and research dollars bring a cure. If you haven't before, please consider sharing our blog with your friends to help us raise awareness. You can also donate to Naomi's foundation through the donate button here on our blog. All money raised goes to fund research and assist the children who are dying from the disease, which is, sadly, still always fatal. Always. We pay all of the administrative costs of the foundation out of pocket, so every dollar you donate goes to the cause. Not too many foundations like around!<br />
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Then we had Halloween. Naomi was an angel. And what a pretty, sweet angel she was too. Lydia was a Little Brown Bear, just like Naomi was when she was one. We got some pictures of them separately and then tried to get a picture of them together. Getting a picture of them together has become a more difficult proposition, since Naomi is stationary and Lydia is...not stationary. So Daddy had to try to pin Lydia to the couch. Neither of them was pleased.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkza5m3lGHDTSei4Rqd1hwbZVs69ps2qDBJaUpIt2Q3aBD3OfyyoOOfP54DuXfJp12x3Y3Pd-yzZ9IdBw584L5fiO_BDDcx0kIjbwMxmk8BM37UFNsRvfn0jGT8iA1s7J-xUEgTdV0tIUi/s1600/100.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkza5m3lGHDTSei4Rqd1hwbZVs69ps2qDBJaUpIt2Q3aBD3OfyyoOOfP54DuXfJp12x3Y3Pd-yzZ9IdBw584L5fiO_BDDcx0kIjbwMxmk8BM37UFNsRvfn0jGT8iA1s7J-xUEgTdV0tIUi/s320/100.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi the Angel. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia the Little Brown Bear.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS5tiIc4yp0jToD_pjX_qmmVi-IqZ5pxSK29YGfFySTMCITfsWgYqLek29c8CjKnGATULOjpTAzIvETrwojllGcnu0BJYXz8LOdmxfrfbNjFYMguz9yW8LMcdl6neIFrItjzCdpylVhSPt/s1600/110.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS5tiIc4yp0jToD_pjX_qmmVi-IqZ5pxSK29YGfFySTMCITfsWgYqLek29c8CjKnGATULOjpTAzIvETrwojllGcnu0BJYXz8LOdmxfrfbNjFYMguz9yW8LMcdl6neIFrItjzCdpylVhSPt/s320/110.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with stop hand up; Lydia being prevented from bailing off the couch. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1M5QG7h86GOZo2mkr4qTnq0YhUILxhKEf_IeRdJEJVtLo-qHlruxun3-i0arTT91VKe-HLs-omRcGatpya2en-I-rh_fDJ4dM29Ia1H3WS6XN_A2l1MEc5SK5PG4iL1iwOW7o65-i234A/s1600/115.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1M5QG7h86GOZo2mkr4qTnq0YhUILxhKEf_IeRdJEJVtLo-qHlruxun3-i0arTT91VKe-HLs-omRcGatpya2en-I-rh_fDJ4dM29Ia1H3WS6XN_A2l1MEc5SK5PG4iL1iwOW7o65-i234A/s320/115.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi, Lydia, Olivia the Pig and Grant the Power Ranger at Grandma and Poppa's.</td></tr>
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Then we went to Grandma and Poppa's to start off our trick or treating. Mommy ate quite a bit of candy at this stop, and the other stops too. Here the girls are with their cousins, Olivia the Pig and Grant the Power Ranger. We also hit our stops in downtown Hollidaysburg, Auntie Laura's house and Uncle Joel's house. Then we went over to Altoona and made our stop at Aunt Jerry's house. We usually trick or treat at Aunt Mary's too, but there was a dual mega meltdown in the car on the way there so we had to head straight home. Next year, Aunt Mary and Gail!<br />
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Lastly, Lydia turned one! Yay Lydia. We had a little family party for just Lydia, in addition to the girls' joint party. Really, can there ever be enough celebrating? In case you are wondering, Lydia has made big improvements in her social skills and some improvements in her communication skills, though she is still behind. Her Child Development Specialist is much less worried about autism, though of course, since it can't be reliably diagnosed until around age 2, nothing can be ruled out. Ah, for those of us who have been through the emotional wringer with a firstborn, that is a long time to wait. Not that we spend all day worrying, but we do spend some part of most days worrying, some days more, some days less. It is hard (impossible) not too...and it all just feels so very familiar, which makes it hard to comprehend that it really could all turn out fine, since things with Naomi turned out very much so not fine.<br />
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Last part of the week - Lydia's birthday party for family. Everyone came up for the celebration<br />
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<tr><td class="tr-caption" style="text-align: center;">Lydia is casual about turning 1</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgIZDIqDsfjus1Jzw2OpEGLMh0FaxFPGaowIxl9uHcYE1xfaodtFUt1Ky_J1jChN6X0yTzDtv_KbJSyh18r8knmkLkFNswgXmXyG7YZ_ZvIuraSsqLvuXREHwLKY_xZHGuDb3Gt_nJnpAG/s1600/415.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgIZDIqDsfjus1Jzw2OpEGLMh0FaxFPGaowIxl9uHcYE1xfaodtFUt1Ky_J1jChN6X0yTzDtv_KbJSyh18r8knmkLkFNswgXmXyG7YZ_ZvIuraSsqLvuXREHwLKY_xZHGuDb3Gt_nJnpAG/s320/415.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with her kitty Marie on Lydz's B'day</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia in Naomi's first birthday dress</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQU0c8_qXkmLgXohzx3dBwlXBpWFgZb8-wERAtHTZ26QRnGje4VIs1wsKKdEDSzuYX5iklIQ-FHcT2CynFvuXPpimcLuqGl_g13ZQqEVBD1u_mLXdEt18RjtomwugeuMkj1ZJIVkhJZolb/s1600/431.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQU0c8_qXkmLgXohzx3dBwlXBpWFgZb8-wERAtHTZ26QRnGje4VIs1wsKKdEDSzuYX5iklIQ-FHcT2CynFvuXPpimcLuqGl_g13ZQqEVBD1u_mLXdEt18RjtomwugeuMkj1ZJIVkhJZolb/s320/431.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi slept as a form of protest and then was entertained by Grampy and Grandma</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoCLvpUBD055iV5mlsXjq8haTzFmtuDyDj4JXLz0zVqnoMqcXHVok2qFb_4mTagg3uXQJxX_8WG21zQd4KmPa33kevXo2Ya6runtFXTT0mwL8OR-mMH-oZhjvst0VP-hNFysgByo2gNmoc/s1600/434.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoCLvpUBD055iV5mlsXjq8haTzFmtuDyDj4JXLz0zVqnoMqcXHVok2qFb_4mTagg3uXQJxX_8WG21zQd4KmPa33kevXo2Ya6runtFXTT0mwL8OR-mMH-oZhjvst0VP-hNFysgByo2gNmoc/s320/434.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia loves the stairs. Nana is keeping a close watch</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9xKp4Aa7kaoTg209vZ5VUKDPWTU7jz1kJ5N1axG3J1Yyviq8SgH4ZI3neYa8mzqN8OlkKX90G5yHQn1qWbvjFGx4Al7CZLPgSe7Wew4Dx4k8G79rM5sfB3dJr0u3Ufb3Qz9BnbIAYK4Wc/s1600/449.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9xKp4Aa7kaoTg209vZ5VUKDPWTU7jz1kJ5N1axG3J1Yyviq8SgH4ZI3neYa8mzqN8OlkKX90G5yHQn1qWbvjFGx4Al7CZLPgSe7Wew4Dx4k8G79rM5sfB3dJr0u3Ufb3Qz9BnbIAYK4Wc/s320/449.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Birthday's are fun</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqS8ewRDG09QFcshLrTfxPotxaRwX9GRdU66Vah-C3lqw6zYb8rn4dZPkZjvBvVaeNQEKjUMIvoNgVZAojcoxkKnbs83XG52UXvNFHKjlVFqMTHRj_qD4Ct5Lp4KrX6SqCNJdpipNPUpd/s1600/451.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqS8ewRDG09QFcshLrTfxPotxaRwX9GRdU66Vah-C3lqw6zYb8rn4dZPkZjvBvVaeNQEKjUMIvoNgVZAojcoxkKnbs83XG52UXvNFHKjlVFqMTHRj_qD4Ct5Lp4KrX6SqCNJdpipNPUpd/s320/451.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And exciting!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvQTEQbO0WlM1hhbbg0behyphenhyphenLrALR0Ex1jl6ju8exAUBeAl7KPNd4XPrCHQQyCmh7N9RewNg3OUoczlSBZomxzpSKkGudYHBPnnsUmzvB9sezy6YeS8EhMqJhNBtDdoJw3_lqYYyxLm6jsx/s1600/461.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvQTEQbO0WlM1hhbbg0behyphenhyphenLrALR0Ex1jl6ju8exAUBeAl7KPNd4XPrCHQQyCmh7N9RewNg3OUoczlSBZomxzpSKkGudYHBPnnsUmzvB9sezy6YeS8EhMqJhNBtDdoJw3_lqYYyxLm6jsx/s320/461.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love you Mommy!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyBPoI5svvgsTHS4-DtbcPtNNyMMQ84gekyFOZtFZiYiyWUIp03u3YJKoMcu0zudhBBuZIALXSWBQCd7Qo-NRLPmYGIcnn4_Ek9M-UIZPiw3I9aEzI5SQdJraNRiz0X3_pENWf-8xIjWoK/s1600/473.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyBPoI5svvgsTHS4-DtbcPtNNyMMQ84gekyFOZtFZiYiyWUIp03u3YJKoMcu0zudhBBuZIALXSWBQCd7Qo-NRLPmYGIcnn4_Ek9M-UIZPiw3I9aEzI5SQdJraNRiz0X3_pENWf-8xIjWoK/s320/473.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All the kids (including Daddy) watch a show at the end of the party</td></tr>
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-69839132603310349182013-10-31T18:01:00.002-07:002013-10-31T18:01:30.021-07:00Halloween Over the Years<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfl78puTc5DszzCKao3cntH3VdOExzTML9b7kHYhRcsgHl2xxMMwwkLg7SIJ3Fb84IpMQC8IetSGnOojyHPsdbty7oINxj4MztzuXWBf9JwL7i-dYdQ6PitvFlpGm6WyZWVTlmDTFKDJau/s1600/118.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfl78puTc5DszzCKao3cntH3VdOExzTML9b7kHYhRcsgHl2xxMMwwkLg7SIJ3Fb84IpMQC8IetSGnOojyHPsdbty7oINxj4MztzuXWBf9JwL7i-dYdQ6PitvFlpGm6WyZWVTlmDTFKDJau/s320/118.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Halloween! Naomi the Angel. Here's a look back at her first five Halloweens.<br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOiGGdIBQ_tzKoE6eLeOhyphenhyphenmA4n3xpK34o44BrziwR5-u7TKQ48TWKPuVFaFzmTQkIRHl06eH6xJZvWIxWdSlQygCOc4yWZf6acuSihDJevmlJ5fhe_7BLHrL3UspNCLBEVJ9lJ7ybE5_nB/s1600/IMG_0491+(1).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOiGGdIBQ_tzKoE6eLeOhyphenhyphenmA4n3xpK34o44BrziwR5-u7TKQ48TWKPuVFaFzmTQkIRHl06eH6xJZvWIxWdSlQygCOc4yWZf6acuSihDJevmlJ5fhe_7BLHrL3UspNCLBEVJ9lJ7ybE5_nB/s320/IMG_0491+(1).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi's First Halloween!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUPToVx0CeQXg3fehjh2ukHh0jkgsZRqk0o9w4GbrQMmwgZ6rrXHLMfEf8unUUf1PCovnibRs1f-3mjoAYS4p1xUuE_q2qHUWZRwNXJFiAEhDTiBywiDZJQzDtPoB3Y17eDxIZoVZbl9s-/s1600/IMG_0493+(1).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUPToVx0CeQXg3fehjh2ukHh0jkgsZRqk0o9w4GbrQMmwgZ6rrXHLMfEf8unUUf1PCovnibRs1f-3mjoAYS4p1xUuE_q2qHUWZRwNXJFiAEhDTiBywiDZJQzDtPoB3Y17eDxIZoVZbl9s-/s320/IMG_0493+(1).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">9 days old. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL0g-0AqClbYHiQ3VFyVQVTk9n0BSwCUGKD0WutnnXiP4LFg2R_Jz5r0M4wZyiP5_1MVc9gX9v84njVlBME9ZBNQA3vsxHO4EqK4c6jGhEvucx7Bal5Up9_E9VD3zLXcayrZFR_3I-7I68/s1600/IMG_4686.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL0g-0AqClbYHiQ3VFyVQVTk9n0BSwCUGKD0WutnnXiP4LFg2R_Jz5r0M4wZyiP5_1MVc9gX9v84njVlBME9ZBNQA3vsxHO4EqK4c6jGhEvucx7Bal5Up9_E9VD3zLXcayrZFR_3I-7I68/s320/IMG_4686.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi's 2nd Halloween. She's not smiling here, but Daddy carved the pumpkin to have teeth that looked like hers. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9e981PlPdJoIckxnqVXBtYltWk9-IJY353H5F9T5AWaaU6d9nUztspDWiAcLk_ESFfddVVuBhZWAwi2ajm6ol4aV9_1yugAmCTl23pZRIbd2jyM6HVgmiD4UEnMxN7184pkZKJDqYYdFz/s1600/IMG_4687.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9e981PlPdJoIckxnqVXBtYltWk9-IJY353H5F9T5AWaaU6d9nUztspDWiAcLk_ESFfddVVuBhZWAwi2ajm6ol4aV9_1yugAmCTl23pZRIbd2jyM6HVgmiD4UEnMxN7184pkZKJDqYYdFz/s320/IMG_4687.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeijqCZlH2kG5Ws1FTr0MvxBH_LHJhKURrVvlSlOs-jJvM0QV-OZlBRQLnA2RytBXwGJgcD2zmNGM2Qk_4Mkio1TipyZA_E8FINEnMJqsgmLoOAzCQk80ukOqNwl8NQjry0jPTyuBVQrxx/s1600/Naomi's+Second+Birthday+156.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeijqCZlH2kG5Ws1FTr0MvxBH_LHJhKURrVvlSlOs-jJvM0QV-OZlBRQLnA2RytBXwGJgcD2zmNGM2Qk_4Mkio1TipyZA_E8FINEnMJqsgmLoOAzCQk80ukOqNwl8NQjry0jPTyuBVQrxx/s320/Naomi's+Second+Birthday+156.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi's 3rd Halloween. Age 2. She didn't like her wig. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimR2wJXGE1bHZbwcqbMYZ3WuyM2c0A_N3eH7OAbBgN7JohopdYKRcTAnZBpXD-nBFsBISe0p2Q4ClJNkpKu6YnDefa60LrrQHQb01OIhAmP2YWOkRSuLDRZQIf6FgfHbOLQ2ZQJngLGtiz/s1600/Naomi's+Second+Birthday+153.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimR2wJXGE1bHZbwcqbMYZ3WuyM2c0A_N3eH7OAbBgN7JohopdYKRcTAnZBpXD-nBFsBISe0p2Q4ClJNkpKu6YnDefa60LrrQHQb01OIhAmP2YWOkRSuLDRZQIf6FgfHbOLQ2ZQJngLGtiz/s320/Naomi's+Second+Birthday+153.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cutest Raggedy Anne I ever saw.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTpi1wkz7v2LBzS4iGVC10yuVyaC7t9wPRCNaUTW7h7Lk0CP2YB8OL5HXPWJcDdiYNYV6YFDkxDepbLlajDuEUrSpQtM1hCAVCVg9gv4zqt_k3LmD7scUiSR1R5QDHPiS-2R9Ke1aceF8M/s1600/010.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTpi1wkz7v2LBzS4iGVC10yuVyaC7t9wPRCNaUTW7h7Lk0CP2YB8OL5HXPWJcDdiYNYV6YFDkxDepbLlajDuEUrSpQtM1hCAVCVg9gv4zqt_k3LmD7scUiSR1R5QDHPiS-2R9Ke1aceF8M/s320/010.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">4th Halloween. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU5HZSqQNYRTCyMMUwwWjCyHBsdVWvgDog5q6fSCW01YeaJZltNOGlSz0_nbfqb2281MnDadxMUjWPBLDqX7KhyphenhyphensICdu5LShD34_axQF2qHjYmx0h2D0WTMvT_L5hCbcebOYOKsURnPVcF/s1600/015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU5HZSqQNYRTCyMMUwwWjCyHBsdVWvgDog5q6fSCW01YeaJZltNOGlSz0_nbfqb2281MnDadxMUjWPBLDqX7KhyphenhyphensICdu5LShD34_axQF2qHjYmx0h2D0WTMvT_L5hCbcebOYOKsURnPVcF/s320/015.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That is an unhappy bat. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ2HS4xrl1f_DcCEBp7DxFSyzWzITfQE7552_fIS56Dm9d33mtZnBsptdCP_S4RRwSr_XmF1wQLfIS4APq4K6L8G9KSC5EH4bWY-QijmP0_XEwHqZL8w-BmlbU72GtUDu8JJDZF-ntqax-/s1600/048.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ2HS4xrl1f_DcCEBp7DxFSyzWzITfQE7552_fIS56Dm9d33mtZnBsptdCP_S4RRwSr_XmF1wQLfIS4APq4K6L8G9KSC5EH4bWY-QijmP0_XEwHqZL8w-BmlbU72GtUDu8JJDZF-ntqax-/s320/048.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">5th Halloween. Pink Rainbow Lion!<br /></td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-74464482045557212302013-10-22T08:01:00.000-07:002013-10-22T08:01:26.544-07:00Naomi is 5 today!<div class="separator" style="clear: both; text-align: center;">
Naomi turns 5 today! </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjopdwH_noXwx8PhR8lURz5ST3Czgbx7bN_LqjylztMoHQghvSPXrBmJsN8efMiTU1OJJwBnGjMxBJaA_-w8OA1YvNJ9QBUvyfrtSH1FAvlsF4KEKZESik2UnIGjgezeiKsr6225bpoLnJ5/s1600/IMG_0080.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjopdwH_noXwx8PhR8lURz5ST3Czgbx7bN_LqjylztMoHQghvSPXrBmJsN8efMiTU1OJJwBnGjMxBJaA_-w8OA1YvNJ9QBUvyfrtSH1FAvlsF4KEKZESik2UnIGjgezeiKsr6225bpoLnJ5/s320/IMG_0080.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's our girl moments after she was born. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO5YbIxl32s7tDkMv8gt7YcoHeaoM5vWjLDuZPOD6Gev9sz_8HFblX8OTElTDBGBz2vahyZeMFI4tmSc-QyE7-Lp_g8tZKlcBpgYyv4LSWwv6VDyEkvCIuEg6qOaDJfNeJMF-1JJc5b9pb/s1600/IMG_0088.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO5YbIxl32s7tDkMv8gt7YcoHeaoM5vWjLDuZPOD6Gev9sz_8HFblX8OTElTDBGBz2vahyZeMFI4tmSc-QyE7-Lp_g8tZKlcBpgYyv4LSWwv6VDyEkvCIuEg6qOaDJfNeJMF-1JJc5b9pb/s320/IMG_0088.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first family picture.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVnS0IWI5Dl1saDRFGEPFa_Tw1jvteLwkaI9Y_ctiefGtFe5cDf2cpkBUdcCofF7VktJJhP_4QLOAEKIfGdD2wbISxhZfl9z2UZQmYc6KJYn8BrAwz26XULgVJCc7G7pgcahXVs3-vNS8c/s1600/IMG_4444.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVnS0IWI5Dl1saDRFGEPFa_Tw1jvteLwkaI9Y_ctiefGtFe5cDf2cpkBUdcCofF7VktJJhP_4QLOAEKIfGdD2wbISxhZfl9z2UZQmYc6KJYn8BrAwz26XULgVJCc7G7pgcahXVs3-vNS8c/s320/IMG_4444.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi on her first birthday doing one of the things she loves best...swinging.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZiNF8ZJCRbi6WTZEaVkB414q3Gx2vWwwDu1ZaKt_5HTy8vG0McPEbXxORFlWM4sbUIIWikjsvId-L1vUBBKFx_5I0Vjti4qviEIsWlSIeZWClaU2h5jsZh-7Xo5WJ766q_CY5B0k1EXA_/s1600/IMG_4553.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZiNF8ZJCRbi6WTZEaVkB414q3Gx2vWwwDu1ZaKt_5HTy8vG0McPEbXxORFlWM4sbUIIWikjsvId-L1vUBBKFx_5I0Vjti4qviEIsWlSIeZWClaU2h5jsZh-7Xo5WJ766q_CY5B0k1EXA_/s320/IMG_4553.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi at her first birthday party.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJccc5pSrzXxpsZkxdw69SQVtTnDy1-wqKuSKUIBKH5kSt-K8nT-AXLJz6qVgMN9YL7mtURvXJ6Eia4kGI7zTmC3sqNvJnFZjRDH_lVS8pufIhboydUXYoLnxJ0qDHPl5eDy1pikh5WNeT/s1600/Naomi's+Second+Birthday+074.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJccc5pSrzXxpsZkxdw69SQVtTnDy1-wqKuSKUIBKH5kSt-K8nT-AXLJz6qVgMN9YL7mtURvXJ6Eia4kGI7zTmC3sqNvJnFZjRDH_lVS8pufIhboydUXYoLnxJ0qDHPl5eDy1pikh5WNeT/s320/Naomi's+Second+Birthday+074.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi on her second birthday.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi all dressed up in the dress and hat Mommy made for her party.<br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizgbDMGw77b9-5fhGT12VSd_NWuJdt-tIdF7FXwR6NmEv5PfeZMMG3e1lBmXHupcYxOYgTdwN0YtWa2vTUHGpL3crWct8gl9kpkKA2u50mWuTuRWWuTxrDWrgS7ClM4hyioimqDCc_gjBX/s1600/Naomi's+Second+Birthday+118.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizgbDMGw77b9-5fhGT12VSd_NWuJdt-tIdF7FXwR6NmEv5PfeZMMG3e1lBmXHupcYxOYgTdwN0YtWa2vTUHGpL3crWct8gl9kpkKA2u50mWuTuRWWuTxrDWrgS7ClM4hyioimqDCc_gjBX/s320/Naomi's+Second+Birthday+118.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with her cake!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCxVmI-hKfnL95bY8CJ04akcQQzh3tSLYsRc_JeFJGF8HRXNo0FT1LnaTX6E54C2WNJXCxfBenP9wXy_GjLW148XVDA7PmoFuRAhpkshXLB2OsYt7K7EoEibWmcKlZuqMZweMopB2HAWRC/s1600/Naomi's+Second+Birthday+114.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCxVmI-hKfnL95bY8CJ04akcQQzh3tSLYsRc_JeFJGF8HRXNo0FT1LnaTX6E54C2WNJXCxfBenP9wXy_GjLW148XVDA7PmoFuRAhpkshXLB2OsYt7K7EoEibWmcKlZuqMZweMopB2HAWRC/s320/Naomi's+Second+Birthday+114.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She loved Eeyore that year. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5pmOvj-jk91uepKpSfyo4a8KRP88tcohK9KhQI8FHp1wSulXED8yESFNZ7OicxXzBBhwvTZ0_lteMFR_wSPbNMGJGPLYueL9ltJadatmhXhxnjBU_5cTAZ5grMI5QmkTpAyxB84kVhGml/s1600/036.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5pmOvj-jk91uepKpSfyo4a8KRP88tcohK9KhQI8FHp1wSulXED8yESFNZ7OicxXzBBhwvTZ0_lteMFR_wSPbNMGJGPLYueL9ltJadatmhXhxnjBU_5cTAZ5grMI5QmkTpAyxB84kVhGml/s320/036.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She loved smiling for the camera when she was 3.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaEs1Uzr4kXgeJ-Wh5_zKd3NvGRYPv2aeaCkBwMgFlQjXD42htuQfa7mphHixwjYMrn7vYAOdNIuGWiWKohfrIpK2lBDANsitKTNZUosH28R3SnW3pTSkNK3pG8ayZK3fZ_H2njDg65srm/s1600/035.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaEs1Uzr4kXgeJ-Wh5_zKd3NvGRYPv2aeaCkBwMgFlQjXD42htuQfa7mphHixwjYMrn7vYAOdNIuGWiWKohfrIpK2lBDANsitKTNZUosH28R3SnW3pTSkNK3pG8ayZK3fZ_H2njDg65srm/s320/035.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi on her 3rd birthday!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-nVcUPa2gfaZnrqHqbGaTqrb8yLV3JNsFOm_KnvoGy4XgAItwFjRM65PgB9pegi3wDoGeUFRhl2bth8hKgjY-OSzuIo45GPQtRCFeozyS-H5EVHQuWmB43O7QP2yuBSDxTZalmLGBi6b6/s1600/064.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-nVcUPa2gfaZnrqHqbGaTqrb8yLV3JNsFOm_KnvoGy4XgAItwFjRM65PgB9pegi3wDoGeUFRhl2bth8hKgjY-OSzuIo45GPQtRCFeozyS-H5EVHQuWmB43O7QP2yuBSDxTZalmLGBi6b6/s320/064.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi's third birthday cake. She loved the old Sesame Street cartoon Ladybug Picnic. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">She likes being a princess.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKHoTixDD0bAMtOTdurzYv-217KrhJHa2OQr_mQ5kjaGn67Nk5UEeHsX29Lmfcuq6H1g32vJPgg_i5Kat3RwNbJNigXEwE-QfCYs_tABzAJyqclmIH6NXJ4ddAfVOyYAtII0crcFlye-z2/s1600/073.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKHoTixDD0bAMtOTdurzYv-217KrhJHa2OQr_mQ5kjaGn67Nk5UEeHsX29Lmfcuq6H1g32vJPgg_i5Kat3RwNbJNigXEwE-QfCYs_tABzAJyqclmIH6NXJ4ddAfVOyYAtII0crcFlye-z2/s320/073.JPG" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Naomi on her fourth birthday in her corn bin Uncle Joel made her. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi at her 4th birthday party. She was sick and had a fever. Poor baby. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This was the year she cried at her party until we had to put her up in her room for some alone time. We brought her back down after all her guests left and when she looked around and saw everyone was gone she smiled and laughed and was pleasant the rest of the day. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi this morning all ready for school on her fifth birthday. We have a big party planned for Sunday!<br /></td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-18925832183335509942013-10-13T19:50:00.001-07:002013-10-13T19:50:40.328-07:00It still hurtsYou know, it still hurts. All these years later, nearly five in fact, it still hurts. Our computer has a photoviewer that randomly cycles through all of our pictures. I really like it. I see our pictures all the time. This one popped up today.<br />
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Naomi was just shy of two months old here and I was madly in love with her pretty darn happy. I won't say blissfully happy, because as I have written before I had concerns about Naomi from the very begining and we'd already been through a horrendous nursing strike so I was a little shellshocked and scared, but not so much that I couldn't keep it all tucked away in a little compartment of my mind so that I could just revel in her most of the time. Plus, there was still nothing definite. So avoidance was still a possibility. I remember taking this picture. I took a whole series of probably 15 or 20. I just could not get enough of her cuteness. I was overwhelmed by it. I paused to attack her with kisses and snuggles while I was taking the pictures. This one was taken post kiss attack. <br />
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Most of the time when the next picture pops up I just enjoy it. Sometimes I experience the new picture like a stab wound. That is how this one was. It's random. On another day this picture might not do that. Today it made me wish things had turned out differently for me and Naomi. That she was a typically developing girl "helping" me with her baby sister, playing, talking, running, deciding what she wants to be for Halloween. It's all very hard. Time is just going by so quickly sometimes it feels like it's running out on us. I miss her already. It's sad. There are no do-overs. It's not like next time she might be healthy and we might be spared all the grief and anguish. There's just this time. <br />
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Naomi was just back from horseback riding here. She loves it. Laughs and acts silly the whole time. Cute.</div>
<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com1tag:blogger.com,1999:blog-8265861613312682909.post-67618274057512218702013-09-20T18:27:00.000-07:002013-09-20T18:27:07.914-07:00Another Bad DayThe Caughey's had another bad day/week, by now you must be sick of reading about them. We will go in order from least bad to most bad. <div>
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First, we have been waiting for the genetic testing for Lydia for Batten's disease and Anne's mitochondrial mutation. We had gotten the results of the mitochondrial POLG mutation a couple weeks ago - Lydia has it just like mom and sister. This wasn't too too upsetting because Anne is normal and there is doubt as to how much problems it caused. Then two weeks ago we got the first set of tests back for the Batten's. To refresh your genetics, Batten's is autosomal recessive meaning you need a bad gene from both parents. We found that Lydia did receive the bad gene from Anne. So we have been anticipating the second test on the deletion that is on Naomi's other gene, but that they did not find in me (so in theory it was a freak mutation and unlikely to be repeated). Well, they ran the test and it didn't work so we had to send more blood from Naomi to the lab. We got the results today and it said that Lydia didn't have the deletion, BUT the test didn't find it in Naomi either (I guess they look at both to compare). We didn't get to talk to anyone, just got the report, so we don't know what this means. They described it as inconclusive and that possibly the results mean that Naomi's gene from me is a mosaic only in her (enough hard core genetics). This would mean that Lydia definitely does not have it. Hell, maybe Naomi doesn't have it either (what is up with her then?!?). At the least it would have been nice to get a phone call instead of a vague confusing report we have been waiting for with baited breath. I mean this wasn't like waiting for your weekly coumadin level or thyroid level - these blood tests are literally life and death. </div>
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Second, Naomi's aide Deb took a full time position and last Friday was her last day. It sucks. It is hard to find good people, and Deb is a good person who cared about Naomi. She cried on her last day. Naomi can have that effect on people. On Tuesday the new aide came. Then Tuesday night we got a call that she quit. Naomi can have that effect on people too. It makes us sad that someone wouldn't want to work with her. She is so sweet and kind. The good news is the new new aide came on thursday and seems to like Naomi.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOyuX5bFIxwRPC_6GoVp_cQjNMTPxLI2CbJSLEJKRy_FgSJo6pu-fB1OG3ArvbowDFF45btlG2PlOUbZ4Xudw3pDK4fdFk816fR0Wa7xxgX6bYQ7ao3LDmt7aXdDBpflkKsaUL2bR7Rtta/s1600/032.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOyuX5bFIxwRPC_6GoVp_cQjNMTPxLI2CbJSLEJKRy_FgSJo6pu-fB1OG3ArvbowDFF45btlG2PlOUbZ4Xudw3pDK4fdFk816fR0Wa7xxgX6bYQ7ao3LDmt7aXdDBpflkKsaUL2bR7Rtta/s320/032.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia toodling around</td></tr>
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Third, Anne fell today over the baby gate and broke her right shoulder. Got her to the doctor and got an MRI which showed a fracture in the joint, and a minorly torn rotator cuff. The good news is that she will not need surgery. The bad news is that she is not going to be able to use her right arm for 4-6 weeks. Unreal. And this happened right before </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3yrWftjcALDhzW2jyqoCM93RAij2jVEI1rZHtZuEuQusWJG4IGcVxeZoYDSdTX8421scFk4TBkA2DPRTVoAmV2NTHap-Npmhb-ZwqcfsejgVpC1BG_4uuzHXYihK9AEJgCoLEcZHJgXBo/s1600/047.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3yrWftjcALDhzW2jyqoCM93RAij2jVEI1rZHtZuEuQusWJG4IGcVxeZoYDSdTX8421scFk4TBkA2DPRTVoAmV2NTHap-Npmhb-ZwqcfsejgVpC1BG_4uuzHXYihK9AEJgCoLEcZHJgXBo/s320/047.JPG" width="320" /></a></div>
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Fourth, Karen, the early intervention early childhood specialist came again for Lydia and there are definite red flags in communication and language. Lydia is 10.5 months old. She rarely responds to her own name. She doesn't make great eye contact. She doesn't babble. She is a physically gifted child and can walk well and climb and use her hands. She is super busy. Still, we are worried about autism, and now the EI folks are too. It is very depressing. We have never heard a child say mum or dad. We know there are lots of variation in development and that it is too early to be sure and make a diagnosis but it is just one more thing. More therapy, more worry, more heartache. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF7ttEQaOTBQQifMzDdvxTXrkBzPLThyphenhyphenuMKrvuVODGJhvt7Ay5jJRmr7afSMKuhXmJGLGJG33LrSGE8VUcQj5b0XLglJ7x_9lPIFozQNiEqpkZmn6bZAb2prg5SfZmD1UbADi0UVMMRsW3/s1600/108.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF7ttEQaOTBQQifMzDdvxTXrkBzPLThyphenhyphenuMKrvuVODGJhvt7Ay5jJRmr7afSMKuhXmJGLGJG33LrSGE8VUcQj5b0XLglJ7x_9lPIFozQNiEqpkZmn6bZAb2prg5SfZmD1UbADi0UVMMRsW3/s320/108.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is how we felt today</td></tr>
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So this has been a pretty bad day. But really probably doesn't crack the top 5 in the past 5 years.<br />
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com6tag:blogger.com,1999:blog-8265861613312682909.post-4810762438294395352013-09-05T08:36:00.001-07:002013-09-05T08:36:19.066-07:00A New School Year<div class="separator" style="clear: both; text-align: center;">
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Naomi started school a few weeks ago. This is her third year and final year in preschool. She moved up from the afternoon class for younger preschoolers to the morning class for older preschoolers. The morning class is a special education class embedded in a Head Start kindergarten readiness class. So instead of Noami being in a class of 5 to 8, she is now in a class of 25! The first two weeks it was just her class. The Head Start kids started this week. Half came yesterday, half come today and they all come on Friday. We are all anxious to see how Naomi does being in such a big class, with all of her issues with noise and commotion, etc. Yesterday went well. </div>
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So far, Naomi has been loving school, as usual! She is a lot like Daddy, who loved school so much that he cried on the last day because he was sad that it was over and missed it over summer break. She has had a hard time getting used to drinking her juice bubba at snack time, but yesterday finally had a breakthrough and drank 7 ounces. So that was very good! She's also been doing good work with her therapists. She told her teachers with her cards on the first day that she was going to watch shows when she got home that day. Naomi is an optimist. </div>
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Below are some pictures from the first few weeks. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP_zC2tSQTZhYhtScu3RY-sZ-teRYSl8upFi1xy-KZ6XIqUyUtdOVqLztSYqzVpR6nCk4cKA6C7USsbpn9DY57BcAJdXhElXqwBbWSAusJMa1RNTkzrt8FdZhBVqYKBqbxT_p00Waa27bR/s1600/005.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP_zC2tSQTZhYhtScu3RY-sZ-teRYSl8upFi1xy-KZ6XIqUyUtdOVqLztSYqzVpR6nCk4cKA6C7USsbpn9DY57BcAJdXhElXqwBbWSAusJMa1RNTkzrt8FdZhBVqYKBqbxT_p00Waa27bR/s320/005.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi on the first day of school. Because Mommy now has Lydia too, Mommy did not have any time to make Naomi her school clothes this year, which Mommy very much missed doing. However, we did have a new experience as a result, which was back to school shopping! It was fun. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSEtXqFhN_qMHnDMIzJrJCwOIWE_tCWWxx0KkhcWRgaWvFqq6SrT7phYxOzHJjb7PrDdvE0sK_4N4ntZvpFy9wUxfbmgrOueytQDsUrixdPyUFeZ6Apfz-2RPR7VhCEbBFR0s11OOVGrnK/s1600/014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSEtXqFhN_qMHnDMIzJrJCwOIWE_tCWWxx0KkhcWRgaWvFqq6SrT7phYxOzHJjb7PrDdvE0sK_4N4ntZvpFy9wUxfbmgrOueytQDsUrixdPyUFeZ6Apfz-2RPR7VhCEbBFR0s11OOVGrnK/s320/014.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Lydia on the first day.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheu6pMgKUrEu9ZH-3lThcRXNyDjwdC0iTQ03qPvSLCG39I4FKO5Mw8ElJs8Ur711oKMS4TmB9RUlyR-V2QRe7aGAlbnodvNpwenHJ2ziwpqkVYP6v9WvzjsTzAPWLAvdnQOWjsOlhIlrIC/s1600/032.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheu6pMgKUrEu9ZH-3lThcRXNyDjwdC0iTQ03qPvSLCG39I4FKO5Mw8ElJs8Ur711oKMS4TmB9RUlyR-V2QRe7aGAlbnodvNpwenHJ2ziwpqkVYP6v9WvzjsTzAPWLAvdnQOWjsOlhIlrIC/s320/032.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi is riding a new van this year with a new driver. It has been going well for her and she likes this van too. Deb is still her aide, for which we are very greatful. Naomi and Deb make a great team. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic8jqqivzZU5I3u1nBZ54biJ5_VcBIp1v6ULNQ2aLn9dE40bbTIVyy7voUvQRsvpOJnwWT45isR5teZKf3SCGTfhTgSo8AY0vvEg55ZmDXDij0JXu9ETmCq7E9aT1yAlXRIF1w77lZnRup/s1600/037.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic8jqqivzZU5I3u1nBZ54biJ5_VcBIp1v6ULNQ2aLn9dE40bbTIVyy7voUvQRsvpOJnwWT45isR5teZKf3SCGTfhTgSo8AY0vvEg55ZmDXDij0JXu9ETmCq7E9aT1yAlXRIF1w77lZnRup/s320/037.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We tell Naomi that riding the lift is like being at DelGrosso's Amusment Park. She thinks this is funny, as she gives me a little smirk and head turn every time I say it. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNBdI4UMHQRNpFQqbX0vDN76lGbqeecPmeSZ4f1bQ9tLVTUsu97qKqIBg3jDpmW4JEm6xMOAH9IvURNTE29FjlNTeQxz0l5j8kpbyMt0wxmjgL6tm0jF8dH1V_32h6KuUV8Q2TBeis0xY5/s1600/042.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNBdI4UMHQRNpFQqbX0vDN76lGbqeecPmeSZ4f1bQ9tLVTUsu97qKqIBg3jDpmW4JEm6xMOAH9IvURNTE29FjlNTeQxz0l5j8kpbyMt0wxmjgL6tm0jF8dH1V_32h6KuUV8Q2TBeis0xY5/s320/042.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Signs of excitement: Stiff legs, hands by mouth, head turned to the side. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhukoqkqHaDJOCZjjGqyZYnum90frWkbwqdPA7weiAkUffzfTKz2f42Bb1r4ZiACiVIX-XU_PThWp4OC0xZ2IhJh2oS2AxUjZIT-qlNDO6b8usEHmHDeiyihWM1Kcx4ltdAhasAfscGVXd6/s1600/048.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhukoqkqHaDJOCZjjGqyZYnum90frWkbwqdPA7weiAkUffzfTKz2f42Bb1r4ZiACiVIX-XU_PThWp4OC0xZ2IhJh2oS2AxUjZIT-qlNDO6b8usEHmHDeiyihWM1Kcx4ltdAhasAfscGVXd6/s320/048.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More excitement: Licking the head rest on her seat. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Uf4Pm2po_zEbYNqyfyzekcjZi-kcIIZPgJvfESlM_nvsJigViXo6a6JEmqBMkBIrwLH-Qh9Kvukv_M9Ct4kbLyhnIR3TJEezFY1d4yCx8MRd4w_-0r1UwPNSB8p5-VorPWCK_Yl99ccR/s1600/049.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Uf4Pm2po_zEbYNqyfyzekcjZi-kcIIZPgJvfESlM_nvsJigViXo6a6JEmqBMkBIrwLH-Qh9Kvukv_M9Ct4kbLyhnIR3TJEezFY1d4yCx8MRd4w_-0r1UwPNSB8p5-VorPWCK_Yl99ccR/s320/049.JPG" width="213" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXBg6yG119x8xOxHtnLuL2Og-LxMrjGC99NK0JF2ox9Fnnbv3yQGjOo3C_2CVYcjSqMOQIclAsX3iVFYh1IE6RNh0R3Us1Pk-vxb88mPrAP4yegyzsw6rXRQaMzQDXs07U303TFAbLFojR/s1600/050.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXBg6yG119x8xOxHtnLuL2Og-LxMrjGC99NK0JF2ox9Fnnbv3yQGjOo3C_2CVYcjSqMOQIclAsX3iVFYh1IE6RNh0R3Us1Pk-vxb88mPrAP4yegyzsw6rXRQaMzQDXs07U303TFAbLFojR/s320/050.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Showing delight. Those of you who know Naomi in real life know exactly the sounds she is making to go with these motions...a breathy hhhaaaa! hhhhaaaa!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUo4-3SoGL0jnSCPCgK484nfVupyORxSLz8NBzegBicOB4kmM69cq9l-FZqCdejMKpbpuJuLdmYTUNQIIm6fBTNwftX7C3X-4ubYQAaoZp6BSL72UhA9rT2FIVkgwo9OWDxtWov9jH0t_K/s1600/008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUo4-3SoGL0jnSCPCgK484nfVupyORxSLz8NBzegBicOB4kmM69cq9l-FZqCdejMKpbpuJuLdmYTUNQIIm6fBTNwftX7C3X-4ubYQAaoZp6BSL72UhA9rT2FIVkgwo9OWDxtWov9jH0t_K/s320/008.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Clementine all ready for school on the second day. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ2zMA4Tg0G_L64I0Ifp6wlnefgH9O4hYyXsHYhajFkc80c2CsnxKsJWjnp45Xtt3FWDta3hQ5sa4zSquTVgckrO_jOtuUfX75YVh5nb8nzWLqbM_tIkVNRN1qXETRvqvPYn0627Ra7Gvy/s1600/015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ2zMA4Tg0G_L64I0Ifp6wlnefgH9O4hYyXsHYhajFkc80c2CsnxKsJWjnp45Xtt3FWDta3hQ5sa4zSquTVgckrO_jOtuUfX75YVh5nb8nzWLqbM_tIkVNRN1qXETRvqvPYn0627Ra7Gvy/s320/015.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying to get a picture of Lydia with Naomi and Clementine. This is what I got instead. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm5K2aJ2tNroDA647V1wFnbi1cy1ZUE3umIMt85pEMGTx1V70nRUzPQtUXt-3S6-MTaA-ajkRuy7IZ1GVzTqWP2D-kz1Kv3j2rsM24zN1aD7Enkq8Fn7muWrL4dRIfKTAArHdOjMNdJhVp/s1600/003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm5K2aJ2tNroDA647V1wFnbi1cy1ZUE3umIMt85pEMGTx1V70nRUzPQtUXt-3S6-MTaA-ajkRuy7IZ1GVzTqWP2D-kz1Kv3j2rsM24zN1aD7Enkq8Fn7muWrL4dRIfKTAArHdOjMNdJhVp/s320/003.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Lydia playing together after school. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikR-wSJpjy_kl_65Cr4-1Z9fej6S5ctStQwqzCSvh0jK7D5St9V1czO6R29zfBXClW0-ovSAd94vetZrY0uOKLTW-CSmNG7vLC1pOr46lJARFm9hRXQpc0ukYYJZR0VWke6SuRfmgx_ktu/s1600/033.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikR-wSJpjy_kl_65Cr4-1Z9fej6S5ctStQwqzCSvh0jK7D5St9V1czO6R29zfBXClW0-ovSAd94vetZrY0uOKLTW-CSmNG7vLC1pOr46lJARFm9hRXQpc0ukYYJZR0VWke6SuRfmgx_ktu/s320/033.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi all ready for school last Thursday. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP1kkEDza_BtEs5O47GnxwqH2Sp541y_45tYrbXnm6CxrPAULubZlsqzl8xKBmzl1ttLD8pwGAfpAHGvLPDdpbDDkm8BRbFdwkIOxWPcQPCBmU7vDEFyVAKL1tAXidxYtRBE00-mv52_2A/s1600/035.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP1kkEDza_BtEs5O47GnxwqH2Sp541y_45tYrbXnm6CxrPAULubZlsqzl8xKBmzl1ttLD8pwGAfpAHGvLPDdpbDDkm8BRbFdwkIOxWPcQPCBmU7vDEFyVAKL1tAXidxYtRBE00-mv52_2A/s320/035.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Clementine exercising in the stander and watching shows after school. Sometimes optimism is rewarded, as long as she does her work too. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi all ready for school yesterday morning. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQCYXDL06LzFRvgZguMr-tb9VcGLrAfdVxUV54k4Av8q-1o_WF2mwSqr58dAmtJk6PgbbcAsn5zWDCumy3nOr8BOL1TLs1OEtJMij_F-P-YEU2JBOA5swb-uOToTLM0OsGUYcF-GhpvWq8/s1600/047.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQCYXDL06LzFRvgZguMr-tb9VcGLrAfdVxUV54k4Av8q-1o_WF2mwSqr58dAmtJk6PgbbcAsn5zWDCumy3nOr8BOL1TLs1OEtJMij_F-P-YEU2JBOA5swb-uOToTLM0OsGUYcF-GhpvWq8/s320/047.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lydia had to get some matching outfits too. Too cute. Also, Lydia is walking! At nine months. Yay, Lydia!</td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com2tag:blogger.com,1999:blog-8265861613312682909.post-38435311961458067062013-08-18T17:48:00.000-07:002013-08-18T17:48:17.426-07:00A trip to the beach<div class="separator" style="clear: both; text-align: center;">
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Hello! We just got back from the beach last week and Naomi had a great time. We left on a Friday headed for Richmond and then to the Outer Banks. We brought along Anne's Aunt Jerry Jo to help with the kids. To accommodate everyone as well all the stuff we needed to bring we rented a Ford Econoline van and took the back two seats out. </div>
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We took a ton of stuff including a laundry basket full of toys, and one full of books. </div>
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We left at around three and inexplicably, Naomi fell asleep in the driveway and slept for 3 hours. Lydia napped too, and the first part of the drive was great. Then we hit Fredericksburg, VA and sat for an hour. We pulled into the hotel in Richmond frazzled. The next morning after her long nap, Naomi got up at 4:15 am. She watched shows with Aunt Jerry (thank God for Aunt Jerry!) and then I took the monsters for a walk around the hotel.</div>
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They were a little cranky.</div>
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We left at 9:00 and hit an accident on I-64 and sat in traffic to get on the Outer Banks for 2 hours. We got to the house at 3:30. It was miserable, but the girls we pretty good. Lots of shows.</div>
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We were staying in Nags Head in a big house with Rob's high school friends Bill and Sarah, Joe and Chris with their 15 month old Karl, Phil and Missy with their two girls Katie and Anna, and Dan and his wife Jennifer. We got settled and had burgers for dinner. The house was right on the beach and had three floors. Naomi got her own room. </div>
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Every day was mostly the same. Naomi the rooster would get up early, usually before 6:00 am. Daddy and Naomi would listen to music and then Aunt Jerry would take over at 6:00 am (Thank God for Aunt Jerry!) and take Naomi for a long walk which Naomi loved. Daddy would go back to sleep. Lydia would get up and we would go up to the common room/kitchen for play time. Lydz enjoyed motoring around the coffee table and playing with toys. Naomi would watch some shows (Lydia would too)</div>
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<tr><td class="tr-caption" style="text-align: center;">Naomi relaxing in the morning on the couch</td></tr>
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Lydz would nap and Daddy would haul all the stuff down to the beach. This included a pack and play for Lydia, usually Naomi's jumper and involved setting up the tent. <br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Lydz in her cage</td></tr>
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We would then spend time at the beach. Naomi really enjoyed laying on her blanket under the tent.</div>
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The best part of the beach was taking the girls down by the water. We called it being sea lions in the surf. Naomi loved it and so did Lydz.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDqGp2gGPvlXMTV5MLnhMcgSVQ9Ixs5GHugEWkgN2S2h6zxP-nZ41Z3l4aHRwV_z_fNKR_1s_9WI6B2CTjjxZtCxVwVnMdxYNp-kTU72nW8avc_0pqQKexYJH8KEJ_m1I-d1Diql_YAC8R/s1600/vacation+2013+073.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDqGp2gGPvlXMTV5MLnhMcgSVQ9Ixs5GHugEWkgN2S2h6zxP-nZ41Z3l4aHRwV_z_fNKR_1s_9WI6B2CTjjxZtCxVwVnMdxYNp-kTU72nW8avc_0pqQKexYJH8KEJ_m1I-d1Diql_YAC8R/s320/vacation+2013+073.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two sea lions heading for the water</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtyIJLvTJG3qqPL13LU22zFHPMv36WKkBN3gOHP8rMwZk-bSwwFcpZNzcfQf97QG-M6vaGKJy7NRbYet9iHFSgmp9HWe8-Ts0b40oDKtVft3Su3PRI8lSpnfuJb6QVNanwvxPnU7lwOWWD/s1600/vaca+045.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtyIJLvTJG3qqPL13LU22zFHPMv36WKkBN3gOHP8rMwZk-bSwwFcpZNzcfQf97QG-M6vaGKJy7NRbYet9iHFSgmp9HWe8-Ts0b40oDKtVft3Su3PRI8lSpnfuJb6QVNanwvxPnU7lwOWWD/s320/vaca+045.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Having a conversation</td></tr>
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Here is video of the two sea lions</div>
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Lydia got into the action too<br />
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All that playing was tough on Naomi</div>
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So sometimes she would take a nap</div>
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We also got in the hot tub some</div>
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And one night we flew kites</div>
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<tr><td class="tr-caption" style="text-align: center;">Phil, Missy, Bill, Katie and Anna</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi flew her kite with her leg</td></tr>
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And then just as it seemed we got down there, the vacation was over. We packed up and went home. The girls had a great time, and we couldn't have had such a good time with out Aunt Jerry. Embarrassingly, we did not have a good photo of Aunt Jerry, but make no mistake, she was the vacation MVP.</div>
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<tr><td class="tr-caption" style="text-align: center;">Chris, Karl, and Joe</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Jennifer and Dan</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Katie, Anna, and Lydz<br /><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bill, Dan, Rob, and Phil</td></tr>
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com5tag:blogger.com,1999:blog-8265861613312682909.post-30358616035287667732013-07-15T17:22:00.003-07:002013-07-15T17:39:02.511-07:00Naomi's First Vacation<div class="separator" style="clear: both; text-align: left;">
Naomi had a big week last week and took her first vacation alone to Nana and Grampy's! It started last Saturday when we came into Pittsburgh for a picnic with Anne's college friends. It was nice seeing everyone with their families. Naomi stayed for a while and then Nana and Grampy came to pick her up to take her swimming. Lydia had to stay with Mom and Dad and played in the grass.</div>
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We stayed at Nana and Grampy's overnight where everyone was a little silly</div>
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The next day we went to the zoo to look at a more permanent arrangement for Naomi.</div>
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We decided to keep her and had a nice day at the zoo.</div>
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We went home that day but were back in Pittsburgh on Thursday for Naomi's doctor's appointment in Pittsburgh. They changed her feeding tube and the nutritionist told Anne that we were going above and beyond giving Naomi a healthy blended diet. </div>
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Naomi then started her vacation! She stayed at Nana and Grampy's while the three of us went back to Hollidaysburg. The first night Naomi went to the boat club where my parents have a boat. Because of all the rain, the boat was not in, but she had a great time swinging. She went to bed like a good girl and was ready for the new day at 6:00. That led to an early morning walk with Nana. Notice it is still a little dark out.</div>
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She got a chance to read books and act silly.</div>
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Playing with Nana and Eeyore</div>
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And getting her hair done by Nana</div>
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Then it was back to the Zoo where Naomi always seems to have a good time. I think she does like the animals, but she also likes to walk and have people around too. She likes to go go go just like Nana and Grampy.</div>
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So pretty with the bow in her hair</div>
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Excited to be there - this is Nana's Hairdo...</div>
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Naomi checking out the Elephants.</div>
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And the goats with Grampy's help</div>
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After the time at the zoo, Naomi went back to the boat club and did some more swinging and lauging and playing. Then it was time for bed with some more silly time.</div>
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The next morning Naomi was up early again to play with Nana and Grampy. She really likes the skylights in the house!</div>
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She went swimming with Grampy and then made the drive back to Hollidaysburg to see her parents and sister. She had a wonderful time and we had a nice rest. Naomi is definitely looking forward to her next vacation.</div>
<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com2tag:blogger.com,1999:blog-8265861613312682909.post-44785401526206725782013-07-05T17:08:00.001-07:002013-07-05T17:08:04.073-07:00ReapingI think about death a lot. The Grim Reaper shadows me. I'm troubled in a way I don't think it should at this point in my life. I have two young children. My life should be full of life, of growth and potential, of possibility. But one of my young children lives in the shadow of the Reaper's scythe. It has thrown me into an early midlife crisis. Well, somewhat early midlife crisis. I am middle aged, uncomfortably hugging 40, after all. I am hyper-aware of my mortality, and of that of my husband and my children. When I look at Lydia I see a fragile life, easily snuffed out, rather than a baby full of health and possibility. I see an old lady, withered and bent. It all goes by so quickly. I feel hemmed in by the certainty of death and loss. The growth of a child and the passage of time should be bittersweet, I think. The bitterness coming from the loss of a baby as that baby becomes a child, and the loss of a child as that child becomes an adult. The sweetness coming from the excitement of seeing them grow and accomplish, becoming ever more confident and independent, until one day they lead lives of their own. There's really just the bitterness with Naomi. The last milestone she reached was learning to sit at 16 months. And that's just if we actually sit her up. She can't get to sitting on her own. But that is where her development stopped, as far as the traditional milestones go. She does continue to make cognitive developments, but as far as doing and being...she's an infant. Lydia blew past her at five months. When I see Naomi getting bigger I feel sad. She'll be 5 in October. Her life is reasonably half over. I look at her long legs and think of how they should be pumping to make a swing go, running with her cousins in play. I look at her pretty face and know I'll never see how she would have looked as a woman. I look in her eyes and know they will never gaze in loving amazement at a child of her own. There is no sweetness in the passage of time. I grew up listening to my female relatives talk about the fear they experienced whenever they were hit with unexpected occurrence. Husband very late returning home from work, child with a high fever, child momentarily lost in a store. They spoke of how they would imagine the worst...death...imagine how they would respond to that loss, how they would cope, imagine the funeral, etc. For them, though, those fears, those dramatic imaginings were quickly pushed away as soon as the husband walked through the door, the fever broke, the loud speaker announcement for Mrs. So and So to please come to the service desk echoed through the aisles. The bullet dodged, they could chide themselves for their silly melodramas and go on with life as it should be. There's no bullet to be dodged here. Batten's disease and death are stubbornly present. The Grim Reaper persists in casting his shadow over us. Go away. Leave us alone, I think. He doesn't budge. Anyone who thinks life is fair is a fool. Anyone who thinks you can ever truly be the master of your own destiny is living in a comfortably lucky self delusion. You can do everything right and end up in the shitter. You can do everything wrong and end up in a bed of roses. <br />
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Naomi screams a lot these days. It's very hard. On all of us, Naomi included. She doesn't like feeling whatever it is she is feeling. That is obvious. I feel so bad for her. She breaks my heart every day. Born doomed, she's never known a moment in the sun. You reap what you sow. Okay. What did Naomi sow to reap this? Yes, there is no fairness in life. <br />
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<tr><td class="tr-caption" style="text-align: center;">Naomi with her wild morning hair.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All ready to go to a picnic with her school friends. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia wants to do whatever Naomi is doing. This mostly annoys Naomi. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi fell asleep having a bubba with Mommy after what will hopefully be one of many more trips to DelGrossos's Amusement Park.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi and Lydia on the couch watching a show with their dolls, Clementine and Arlene.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia isn't really allowed to watch shows, though it does happen because Naomi watches and I don't want to rigorously segregate the children, but Daddy posed them here like this and asked me to take their picture.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lydia...just because she's cute too.</td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com1tag:blogger.com,1999:blog-8265861613312682909.post-30313324759047403232013-06-23T19:24:00.001-07:002013-06-24T04:19:41.079-07:00Late Spring Fun<div class="separator" style="clear: both; text-align: left;">
Naomi completed another year of preschool in the IU08 special education program. She had a great year. So good, in fact, that she is going to advance next year to the 4 year old program. Her teacher, Miss Stephanie, and I had originally planned to keep Naomi in the 3 year old program until she starts Kindergarten in two years. We planned this because Naomi does better in smaller rather than larger groups, due to noise, chaos, and a need for predictability on her part, and because it is a 3 day a week program. Naomi's transition from home services to school last year was...not easy. The 4 year old program is 4 days a week and it is combined with the Head Start kindergarten readiness class. So rather than a class of 5 to 8 students alone in the classroom, it is a class of 5 to 8 students embedded in a Head Start class of 20 some students. That is a big difference. This year, however, there was about 45 minutes of overlap between Naomi's class and the Head Start class and she did better than anyone expected. So she is moving up. If it doesn't work out, we can always move her back to the three year old class. One big positive about the 4 year old class is that it is in the morning, when Naomi is at her best and brightest. Her class has been an afternoon class the past two years. Naomi still naps most days, so that has been difficult for everyone. I hope it goes well. It is fun seeing her become such a big girl. The only big concern we have is that exposing Naomi to an additional 20 young children a day will expose her to a lot more illnesses. She was sick a lot more this year than any year so far. Illnesses are especially bad for Naomi because high fevers cause regressions for her and she has never come completely back after each regression. Some things have always been lost forever. It is hard. It is hard to balance these things. Because batten's disease is always progressive and always fatal, and because she is already in the age range (4 to 7) where her disease will start to cause her big problems, we have decided to allow the additional exposure. Regression is going to happen regardless of what we do. And if she can have 1 year, or 1 month, week, day, of a more typical experience, then we are going to give that to her. We are in the phase of her life where we feel like we need to go for broke with her as much as possible. </div>
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The end of the school year also brings the end of the year festivities. The first event was the fishing trip to to the Frankstown Sportsman's Club. I did not take Naomi last year because I was afraid she would scream and have a bad time. That was a mistake. So I took her this year. We had a GREAT time. Since Lydia was born, Naomi and I don't have very many, as I like to call them, Good Old Fashioned Mommy and Bear Days. This was one of those days. Just Mommy and Naomi, two girls having a good time fishing together. Naomi loved it. I loved it. It was so obvious she was really enjoying the one on one time. Until Lydia, we spent almost all of our time together. Things are very different now, as they always are when a sibling enters the picture. She was smiling, laughing, turning in to me, pressing her forehead on me (a sign of affection, like a hug or a kiss). The sportsmen at the club were great too. It was so obvious they really enjoy the kids. They made sure each child got a fish and handed out medals at the end. Loved it. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguMTqUCYd0D1gzonw6pVac0Ty_YAyzD4W0vawldf_zOChkK8Cisgsg5tJxUTyawBwELawk18CJGEqxU7s-_DdYPg1zB9ebjCiqSTaAtg5bdexO5xHiy1KyRXUkVk2ulutQ-yetkuCUidzf/s1600/097.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguMTqUCYd0D1gzonw6pVac0Ty_YAyzD4W0vawldf_zOChkK8Cisgsg5tJxUTyawBwELawk18CJGEqxU7s-_DdYPg1zB9ebjCiqSTaAtg5bdexO5xHiy1KyRXUkVk2ulutQ-yetkuCUidzf/s320/097.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi at the fish pond. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The little pond. Just right for a group of preschool kids. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi is loving it. We were outside, the sun was shining and we were together. It was perfect.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi's fish! They all got thrown back in. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjchtWWUkU7auruco5F5QZH_0e3JRIc0xXcReSgwiF6sJYcOd7CI7BlvnBpLDkDfDbHTmkHDadcAGtLm9xOgwXBZ60jvvbHBHbdNC32gW82jNtr7tUvRhPAorSSo6UcjrPeKy-7L-EPjz1E/s1600/111.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjchtWWUkU7auruco5F5QZH_0e3JRIc0xXcReSgwiF6sJYcOd7CI7BlvnBpLDkDfDbHTmkHDadcAGtLm9xOgwXBZ60jvvbHBHbdNC32gW82jNtr7tUvRhPAorSSo6UcjrPeKy-7L-EPjz1E/s320/111.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with her medal. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRNOfjuIseGaSHED9WpAJJRm2KJstKcF82lkMVZdkmuGEjyBOSevaWLXYkKYTuE6J42Grq7Cp3Iu5sO5UrrROusPAQ2D28VjDmx_G0T0tuNtVbbqztdozL_aaQTW8zThuXwuv6__pSJJQz/s1600/117.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRNOfjuIseGaSHED9WpAJJRm2KJstKcF82lkMVZdkmuGEjyBOSevaWLXYkKYTuE6J42Grq7Cp3Iu5sO5UrrROusPAQ2D28VjDmx_G0T0tuNtVbbqztdozL_aaQTW8zThuXwuv6__pSJJQz/s320/117.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She fell asleep during the medal ceremony, stayed asleep when I put her in the car, stayed asleep the whole ride home, and stayed asleep when I brought her in and put her on the couch. That NEVER happens. She always wakes up when we try to transfer her. She was worn out!<br />
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Then there was the end of the year program. The parents all come, and sometimes grandparents too, and watch a little performance by the students and their teachers of songs they have been practicing. It is a demonstration of what the do at Circle Time every day...taking attendance, singing songs, checking the weather, practicing counting, saluting the flag. Then they get their certificates. It was SO CUTE. Naomi was such a good girl. So big. She sat and waited so patiently to begin and was full of cute smiles while her aid Deb helped her participate in the songs. She was so proud of herself. She loves the songs and the little motions they do with the songs. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdCedz2reVsIKp6k3Fp2Q9hePxcZK8HpTjitOgSxCxW7pUWBsp-gmBLeI08O6LFByUj5yuEcnEwyw-vF89kpLV7NZkrL78ELoU0vHAMWQeD0Nh_sCtXBHrReRdojNcWbCb0llqFWU3sjhl/s1600/059.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdCedz2reVsIKp6k3Fp2Q9hePxcZK8HpTjitOgSxCxW7pUWBsp-gmBLeI08O6LFByUj5yuEcnEwyw-vF89kpLV7NZkrL78ELoU0vHAMWQeD0Nh_sCtXBHrReRdojNcWbCb0llqFWU3sjhl/s320/059.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Deb during attendance. Naomi indicates that she is present by Deb helping her push a switch to play a recording of her name. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi getting her certificate. We didn't get any pictures of her performance during the songs because we were too transfixed by her enjoyment of it all. </td></tr>
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Naomi and Lydia finally got a double stroller! This is great. I haven't been able to take the girls out together since Lydia got too big for me to wear in a front carrier, which was when she was about 8 weeks old. She's kind of a big buffalo, that one. Naomi L O V E S being in the double stroller with Lydia. Here they are on our first trial outing in it at Toys R Us. <br />
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And now some random updates.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiHYHODEBWZZxPJmQjNV_sM238IlN6XDwD8qVb2vvz3jpu7b6OxTiXuklqs8U1HmCUTzInp0vcKVp6vfJxVanK_aibKJAZfiVYHNkN7UaP1SRjVmQkFA9m2s_mAeUPV301rV6veiaHleTZ/s1600/089.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiHYHODEBWZZxPJmQjNV_sM238IlN6XDwD8qVb2vvz3jpu7b6OxTiXuklqs8U1HmCUTzInp0vcKVp6vfJxVanK_aibKJAZfiVYHNkN7UaP1SRjVmQkFA9m2s_mAeUPV301rV6veiaHleTZ/s320/089.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma and Poppa's pool is open! And we have been swimming. Naomi still loves the pool.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9TNscN_IvbVKE1K_JRy2LuT7kvoo79kGZl70ou8_95NHECTZ5Y4k-g8MPK9c332iDaMkaWC09awyTVHI5a6Biy6URYy5q1zbrcqa8inZsthfrKv0htDRmfzktLXuOficGTrlcLqtDz848/s1600/100.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9TNscN_IvbVKE1K_JRy2LuT7kvoo79kGZl70ou8_95NHECTZ5Y4k-g8MPK9c332iDaMkaWC09awyTVHI5a6Biy6URYy5q1zbrcqa8inZsthfrKv0htDRmfzktLXuOficGTrlcLqtDz848/s320/100.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here is Naomi sleeping in her bed at night. It's basically a double bed sized crib with a drop side to get her in and out. Naomi has two sleeping styles. Starfish, which is her sleeping on her back, arms and legs out so she looks like a, well, starfish. And Side of Beef, above. That's Duchess, her stuffed cat Lydia got for her when she was in the hospital having her feeding tube placed. I put Duchess under her arm. She tells me with her cards that she likes that. Naomi can't grab a favored toy to hug, so we have to make sure to put them in her arms. Then she does hold them. It is sad, how little she can do for herself and how typical her wants and needs are.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEvHbvAIQGftjMiOkmjGu_H3xHu5NSpWKQy_T-fVe9BsW5G5820I4jJGHPGafbN5Gbub7rvWIOSIFAFAy4jRD8fknDhYhZm3LgmrQh9mT33fYpELBJLmbMrh_6tw4zIybBF31X0eSiuL2K/s1600/106.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEvHbvAIQGftjMiOkmjGu_H3xHu5NSpWKQy_T-fVe9BsW5G5820I4jJGHPGafbN5Gbub7rvWIOSIFAFAy4jRD8fknDhYhZm3LgmrQh9mT33fYpELBJLmbMrh_6tw4zIybBF31X0eSiuL2K/s320/106.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the double stroller in the yard, checking the garden with Mommy and Daddy. The burned out patches are where I am trying to use vinegar to kill a nasty thistle infestation. I won't use chemicals. We drink the water under that ground. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMqcVpKv1iI-vDZLR5zqJvZYSU7up-sLsEaUN0FcZUBudcT_v7vKtvuJzLHggzAxQQBB1m2DT1dblubBq16A4_Q_iFG-0Oy62KlPJS5Y55UxxWGm_fE_RvnS2nFB6ynkE7f2SWyWmgtHxU/s1600/112.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMqcVpKv1iI-vDZLR5zqJvZYSU7up-sLsEaUN0FcZUBudcT_v7vKtvuJzLHggzAxQQBB1m2DT1dblubBq16A4_Q_iFG-0Oy62KlPJS5Y55UxxWGm_fE_RvnS2nFB6ynkE7f2SWyWmgtHxU/s320/112.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">DelGrosso's Amusement Park is open!! We made our first trip of the season last weekend. Naomi still loves rides. We bought her a season pass. As much as she went and rode last year it will be more economical. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCmtvoMdXZLfxssmF_JZRXOfe-TrUWqcJefgoVwIGD8pcsg_7sAKyEci-2Uvj7YcO23ZGYAFbFon1Wcez7fRwomOZKrQdOVJAylxbUG4mmBPJ30KsAF5AfbhYbAB-IuefDK8p2aKHGad6F/s1600/129.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCmtvoMdXZLfxssmF_JZRXOfe-TrUWqcJefgoVwIGD8pcsg_7sAKyEci-2Uvj7YcO23ZGYAFbFon1Wcez7fRwomOZKrQdOVJAylxbUG4mmBPJ30KsAF5AfbhYbAB-IuefDK8p2aKHGad6F/s320/129.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swinging in the yard. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhutfkxoXkcSF3UF_RNyEgqFPpwDz6RB4BZnEa270sx4peOXsFWR6MlMDkPKiXI9Ymv__bcZcIHD4yFxNN15kuZlJGPpCJxR-lQSoUwH9q41MnI1pv40nkOKS-LMmqkBozRBGWgK7nbyoMx/s1600/232.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhutfkxoXkcSF3UF_RNyEgqFPpwDz6RB4BZnEa270sx4peOXsFWR6MlMDkPKiXI9Ymv__bcZcIHD4yFxNN15kuZlJGPpCJxR-lQSoUwH9q41MnI1pv40nkOKS-LMmqkBozRBGWgK7nbyoMx/s320/232.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An unexpected nap on the playroom floor. One minutes she was rolling around listening to Violet sing to her, the next she was sound asleep. </td></tr>
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Naomi was invited to her first friend birthday party! This was very thrilling. Who knew if she would ever be invited to a party independent of relatives and her parents' friends? She had a great time. Happy, laughing, enjoying the day. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOBYuJsqo63FrUiAK_hqoFUIO6JUnsftqQvl7tO2FMTw2AlSYU-PwH9-WOUS6dxfkclQ6uHkxlMeXGXykGhkwjh_mGf2f-YvoSdp1jdqbxfvzJF1tD01HsSoZRw5rbxEsJyMdWJt-B1GoY/s1600/288.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOBYuJsqo63FrUiAK_hqoFUIO6JUnsftqQvl7tO2FMTw2AlSYU-PwH9-WOUS6dxfkclQ6uHkxlMeXGXykGhkwjh_mGf2f-YvoSdp1jdqbxfvzJF1tD01HsSoZRw5rbxEsJyMdWJt-B1GoY/s320/288.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I just love her little face.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhouv-pgCAEutGilZZMJxPATBtirSGkMJDtFAxgEMkFQCZlPkc8hviSEohhLtWQ78_YyruzmaNpXzcWMze9lCWMXCmyQpLJbDiC-cNG0oKFmT8IlQoiX2ADeCAqN_y5WfjDZPefZUDGM4GV/s1600/290.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhouv-pgCAEutGilZZMJxPATBtirSGkMJDtFAxgEMkFQCZlPkc8hviSEohhLtWQ78_YyruzmaNpXzcWMze9lCWMXCmyQpLJbDiC-cNG0oKFmT8IlQoiX2ADeCAqN_y5WfjDZPefZUDGM4GV/s320/290.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So cute. So sweet. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0ulZxumWdqHVRRzGukoail0nbcvKk3jYbwcOt3w6Iyyn98mRHK2TG6sKAm8LFrgKZsBuXCoDRo99Edh2cjbA67RW_YfmQLj67J4o83kFDnlzTTwAFQAVAZdJorzmrxUYqr2oMYC9asBV/s1600/295.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0ulZxumWdqHVRRzGukoail0nbcvKk3jYbwcOt3w6Iyyn98mRHK2TG6sKAm8LFrgKZsBuXCoDRo99Edh2cjbA67RW_YfmQLj67J4o83kFDnlzTTwAFQAVAZdJorzmrxUYqr2oMYC9asBV/s320/295.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So silly.</td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com1tag:blogger.com,1999:blog-8265861613312682909.post-10938736651819882062013-05-27T17:39:00.002-07:002013-05-27T19:26:13.971-07:00Busy Days<br />
Lots and lots of busy times around the Caughey house these days. Lydia is six months old now. She is army crawling, eating cereal and squash and is utterly fascinated by Naomi. She crawls over to where Naomi is and tries to touch her. Naomi is still not sure about that and sometimes cries as though Lydia has touched her with hands made of acid or something. On the other hand, Naomi tells me with her cards that she loves Lydia and likes having her live here at our house with us and she would be sad if Lydia went to live with Grandma and Poppa or Auntie Sarah. She also wants Lydia to go horseback riding on Dakota with her, though she does not want Lydia to go with her on her sleep overs at her grandparent's house. That's her special vacation time. School is almost finished for the year. Naomi and I went fishing with her class two weeks ago and on Tuesday she has her end of the year performance. Thursday of next week will be her last day of school. I can't believe the school year is over. Time really does fly. That is hard, because I know our time with her is limited. In other news, I decided I'm ready for Naomi to no longer have Batten's disease or mitochondrial disease and instead to be a healthy, typical four year old.<br />
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In honor of Lydia being six months old and to help you all get to know Naomi better, I've compiled a photographic retrospective of Naomi at six months. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfMKj29Z8GlxFhyRtmRiL713oSWI14DHiXdR6nc0CgWU4cTx3dc59uvypO0MzMf9jG4iR5r4vUOM2ulDlUcwQYns-Ci4yZznIJ6SRKMn1wH4tnzIZ9avJw_NutSapuV_dB6Df93_3d77Iy/s1600/IMG_2012.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfMKj29Z8GlxFhyRtmRiL713oSWI14DHiXdR6nc0CgWU4cTx3dc59uvypO0MzMf9jG4iR5r4vUOM2ulDlUcwQYns-Ci4yZznIJ6SRKMn1wH4tnzIZ9avJw_NutSapuV_dB6Df93_3d77Iy/s320/IMG_2012.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Around six months we started to see happy smiles fairly regularly.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivnoyKwMXhLLK_oq_KM-zw4OZiBDEtCNCCF9DmdUgIXzOjdRIemI76JjsFAQfmC4X5tiVKQDtFxP8SDdX0uDhJagtI3JXacHPFOrcITjDDONiGpRZgBSr8U6gfWkV00jEBTT0QfXrMp2QW/s1600/IMG_2015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivnoyKwMXhLLK_oq_KM-zw4OZiBDEtCNCCF9DmdUgIXzOjdRIemI76JjsFAQfmC4X5tiVKQDtFxP8SDdX0uDhJagtI3JXacHPFOrcITjDDONiGpRZgBSr8U6gfWkV00jEBTT0QfXrMp2QW/s320/IMG_2015.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was also the age she started playing with her hands, a lot. So much so that she ended up being tested for Rett's Disease, which she does not have. She still does it, and now she mouths her hands a lot too, which means she also smells like slobber a lot. I try very hard to keep her fresh and pleasant, so her hands get washed frequently. She does the hand play for the feedback, or stimulation, it gives her. I think it is also how she fights boredom, considering that she is pretty normal on the inside, but her body is very non-functional, and she's visually impaired as well. She's close to what's called "locked in", which must be pretty miserable (hence the screaming?) The only, I don't even know which word to use here, blessing?? is that she has never known anything different so she has no memory of what it is like to be fully functional, so she is still a very happy little girl most of the time.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHD399Ce5pd89QzakvG3wZNb3UWxGIVsrVhN_gv_Qr9-r3AdzY7WTwidMu6pl8sZKNssbrH5oAwncfP8GZQoI3ZQedAHksugxJ45hxgGi8mNayolZcw8sBTAwrfrKY6QInJxOmdDLNxpO/s1600/IMG_2028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHD399Ce5pd89QzakvG3wZNb3UWxGIVsrVhN_gv_Qr9-r3AdzY7WTwidMu6pl8sZKNssbrH5oAwncfP8GZQoI3ZQedAHksugxJ45hxgGi8mNayolZcw8sBTAwrfrKY6QInJxOmdDLNxpO/s320/IMG_2028.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I posed her this way. She has never been able to pull herself up. Her arms and hands are probably the least functional part of her body. They have always been an issue for her. For example, part of her Early Intervention program the first year was infant massage. Naomi loved it very much, except for having her arms and hands massaged. When I got to her hands and arms she would scream and pull them tight to her body. I tried very very hard to desensitise her arms and hands and get her used to moving them and having them moved and manipulated but made very little progress. It's kind of a big deal when you can't or for some reason won't use your arms and hands. So much development is tied to their use. Crawling, for example, is spurred on by the desire to reach for things. But if you can't see very well and you are very hand and arm adverse? No reach, no crawling, and developmental progress becomes very difficult.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwjeEkWyOx8mVaQmpKCq6rrvBZzVRB_ik7Mki1zNoXVgH9pMJoxX9Amu24G3sNGxLVeQlPKujfAo9eOY_PzbisN0zBWc-iVh8p0-rDJqPxL5eVqwS7Q0o5_oLI6QFtOinauRoNL-BbiG4Z/s1600/IMG_2051.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwjeEkWyOx8mVaQmpKCq6rrvBZzVRB_ik7Mki1zNoXVgH9pMJoxX9Amu24G3sNGxLVeQlPKujfAo9eOY_PzbisN0zBWc-iVh8p0-rDJqPxL5eVqwS7Q0o5_oLI6QFtOinauRoNL-BbiG4Z/s320/IMG_2051.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Why is a baby in jeans so over the top cute? </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ-s5nGYMlYRw-0KxaRo9Y9W3cgAYlgGNaqH51BGA_aB3l7hb5ip-L_kLoyRNOrp05OKfonOwyQZR3rb2FRMRvOoLhVOHLMV9TQNmDahIpITduV4QJIJ40KlVAaBI96dXpEk4PZjbUKnGa/s1600/IMG_2034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ-s5nGYMlYRw-0KxaRo9Y9W3cgAYlgGNaqH51BGA_aB3l7hb5ip-L_kLoyRNOrp05OKfonOwyQZR3rb2FRMRvOoLhVOHLMV9TQNmDahIpITduV4QJIJ40KlVAaBI96dXpEk4PZjbUKnGa/s320/IMG_2034.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi has loved to snuggle since she was a little baby. She still loves to snuggle. Sometimes when she cries and screams seemingly out of the blue for no reason it is because she wants to be held. I try to hold her as much as I can, and have other people hold her and maintain physical contact with her as much as possible. Body contact is very important to her sense of well being.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Ufbwg-44Y0WcbfKhWwhcKAAht-7D-Uc65nsgXVHW7H6AUpYFhyczNc_wZwIP3dwHNgp-NUU6Ibv6RdFPC-C2st9DvzGR28G2dqfAYOkj11RM3h__AoAqomyM7mrO_mHPXI8SW61aG_9h/s1600/IMG_2065.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Ufbwg-44Y0WcbfKhWwhcKAAht-7D-Uc65nsgXVHW7H6AUpYFhyczNc_wZwIP3dwHNgp-NUU6Ibv6RdFPC-C2st9DvzGR28G2dqfAYOkj11RM3h__AoAqomyM7mrO_mHPXI8SW61aG_9h/s320/IMG_2065.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sometimes it was so hard to be happy in the moment with her. I wish I did not have to grieve her and her illness at the same time that I have her with me. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglXK8fG_bYFZ09cFgOEM1vqRmuLMlJTWdPCAPTi53hMqkBcex8wquH-sfdIk_781uLwwW8Vd6U_S2TXCIv1inJbkym5h0icD5bT_-UkHXtYS6PS55I1UYtmD3PDJiBceHpdk6pk2G6WXNg/s1600/IMG_2082.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglXK8fG_bYFZ09cFgOEM1vqRmuLMlJTWdPCAPTi53hMqkBcex8wquH-sfdIk_781uLwwW8Vd6U_S2TXCIv1inJbkym5h0icD5bT_-UkHXtYS6PS55I1UYtmD3PDJiBceHpdk6pk2G6WXNg/s320/IMG_2082.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And sometimes it was very easy. This was part of a little game and song I made up that we played. She really started to respond to play at this age. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS-wbtpOYMjCdFIay2mW2xbhWvSc702cQd98joSc3GDp6118p3ZnXd_eOF46rZdcf902awLKi5MbkgTdZfRw39szug9vR6foK7onF9_eR_cGEmXXl3kIjCVq8ShWCfD5zYERabqKGzpJF1/s1600/IMG_2126.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS-wbtpOYMjCdFIay2mW2xbhWvSc702cQd98joSc3GDp6118p3ZnXd_eOF46rZdcf902awLKi5MbkgTdZfRw39szug9vR6foK7onF9_eR_cGEmXXl3kIjCVq8ShWCfD5zYERabqKGzpJF1/s320/IMG_2126.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even then she was joyful most of the time. It was sometimes hard to see that at the time because her way of relating is so atypical. It took time to learn to read her cues. I know all parents wish their child had come with a handbook, but it would have been extra useful with Naomi. It wasn't like we could google something and find explanations or answers. She's a one of a kind. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBeXSxhaFYt7PhOY3Yii_cxxFP9BdOgBJSbyKn8YKIIitJyf2PUuO_kql8N9lfLa8kehTPLFuvnLhX_9jniGBjx3MHlF6SRHzJPMGeSagAYmok36JXJvh8Xs4MnUHXqRhyphenhypheniZfiF4f_uAVF/s1600/IMG_2122.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBeXSxhaFYt7PhOY3Yii_cxxFP9BdOgBJSbyKn8YKIIitJyf2PUuO_kql8N9lfLa8kehTPLFuvnLhX_9jniGBjx3MHlF6SRHzJPMGeSagAYmok36JXJvh8Xs4MnUHXqRhyphenhypheniZfiF4f_uAVF/s320/IMG_2122.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is one of my favorite pictures of Naomi. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-dlYtvS-vuqPEqG1gbHkOBHip1p-svgdiWfW101I7KyYHkCKupfPClcwIUSuexuHdKD6RHDYQROY9neK03rKG_6onXyr3UgMzm7ztVoVtpxvVGOQ1YROY4hnzC3tsBkUGM8VVkNS3kRp4/s1600/IMG_2123.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-dlYtvS-vuqPEqG1gbHkOBHip1p-svgdiWfW101I7KyYHkCKupfPClcwIUSuexuHdKD6RHDYQROY9neK03rKG_6onXyr3UgMzm7ztVoVtpxvVGOQ1YROY4hnzC3tsBkUGM8VVkNS3kRp4/s320/IMG_2123.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She has always been a Daddy's girl. I put this mirror on the floor both to try to encourage her to look at herself and so that we could see what she was doing while we did her physical therapy exercises. It was like having a second set of eyes when we practiced alone.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Daddy helping Naomi look out her favorite window. I still feel bad that we took her away from it when we moved a year later. I just had to get out of that house, though. I had a strong need to get rid of and away from everything from what I call Before. Before is when we didn't know our child would be profoundly disabled from a terminal illness. All the things from Before seemed to mock me, like, oh, and what made YOU think you'd get a happy ending? So we sold the house and moved and I gave away all most all of our possessions...furniture, knick knacks, housewares, etc on Facebook as part of my Sale...Where the Price of Everything is Free. I even gave away my piano. I had imagined her taking piano lessons and practicing on it and I just couldn't bear to look at it knowing that would never happen.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Another posed picture. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZUrRC6VX3cNsTImWOTiCtwKuEP8x6XNJO2ALqcj1mKpDsv3YLypRAxI8v3l5neviW20jXJ9Ac79Rjx_XJxttpcY2XYVJ4y4XFfGvrIxv_tJStoUQI7hMsyimWDCt5V108uYgk015lObp2/s1600/IMG_2177.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZUrRC6VX3cNsTImWOTiCtwKuEP8x6XNJO2ALqcj1mKpDsv3YLypRAxI8v3l5neviW20jXJ9Ac79Rjx_XJxttpcY2XYVJ4y4XFfGvrIxv_tJStoUQI7hMsyimWDCt5V108uYgk015lObp2/s320/IMG_2177.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dying Easter eggs on her first Easter. Margot helped. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc-WFLaYuYnhR9rnInXe9qkXkbrs3KprgBJOkLXveQXSto0iuep7LhK6I8ccePmSi6V_x-iENJxn0Z8DGS8JXKRWAsOdglD4utliGF2SAcKe_iIxWSwyfPmY8v4Yl558Ey7hnynPiDRtfW/s1600/IMG_2183.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc-WFLaYuYnhR9rnInXe9qkXkbrs3KprgBJOkLXveQXSto0iuep7LhK6I8ccePmSi6V_x-iENJxn0Z8DGS8JXKRWAsOdglD4utliGF2SAcKe_iIxWSwyfPmY8v4Yl558Ey7hnynPiDRtfW/s320/IMG_2183.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As did Grace, Uncle Brent and Auntie Sarah. We did this first thing Saturday morning when we woke up. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1JBXEgQ70IcbhRNvjHOfyBLrA852yWsTXeEO5uy4fd53uBjT-zRsFkGchuTYzK9jG101edN-3dRebN7QwCcxpbq9LoRMrOgZu4Ja_g3PtNwoLWwcZxw4HE_lYxodD5IQ2jhnLS3y7TEui/s1600/IMG_2182.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1JBXEgQ70IcbhRNvjHOfyBLrA852yWsTXeEO5uy4fd53uBjT-zRsFkGchuTYzK9jG101edN-3dRebN7QwCcxpbq9LoRMrOgZu4Ja_g3PtNwoLWwcZxw4HE_lYxodD5IQ2jhnLS3y7TEui/s320/IMG_2182.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1oClMpcJoNhSRixcdnW0jH22IfVlQEgsgI08-khvvWw0X-431E43sxWUPwWwDYqb1GZj4JOo08EZqOcvWC7Pcd5tE7t0Wh7AzGYyjoPysEzj0OZJP7lN-0_oL-LdvrHmpd626obU2LQ-7/s1600/IMG_2188.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1oClMpcJoNhSRixcdnW0jH22IfVlQEgsgI08-khvvWw0X-431E43sxWUPwWwDYqb1GZj4JOo08EZqOcvWC7Pcd5tE7t0Wh7AzGYyjoPysEzj0OZJP7lN-0_oL-LdvrHmpd626obU2LQ-7/s320/IMG_2188.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this picture. She's not looking at me but was rather drawn to the camera flash . I loved it, and all of the ones like it, to this day, because it lets me see what it would be like if she ever looked me straight in the eye. She never does, at least not at any distance. Sometimes we do lock eyes when we have our foreheads pressed together. Pressing foreheads together is one of the ways Naomi connects with another person. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg87kFh-sxwkljuidiN4iG2ia4N8B6HGZgrwOm782ZHgteUynZz_IKnNanhFA-HbhK1U_fZfaB97nFeu9I_vqKkhQasmWngP4NWjmymfWctNn_QP5n2FSdZRICEfaisUEHL8TCWGzCvVvFY/s1600/IMG_2192.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg87kFh-sxwkljuidiN4iG2ia4N8B6HGZgrwOm782ZHgteUynZz_IKnNanhFA-HbhK1U_fZfaB97nFeu9I_vqKkhQasmWngP4NWjmymfWctNn_QP5n2FSdZRICEfaisUEHL8TCWGzCvVvFY/s320/IMG_2192.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her first Easter basket. The candy was for me. The bunny is in her bed with her as I write this. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Easter egg hunt Easter morning in our front yard.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">She fell asleep getting ready for church.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg-MSmNxnuI9pAsH0HxTNc3piowUIlC8dbaNFQVrxixPaoncxSiGcZ5umvjFKn3yqMYyOUSjDg_73ykG9Wasyfk4S22exq50yWVf1bz-Jjv8_BA6u46r_Q0ipVGCjZH6C7fb5AAzRHKqfu/s1600/IMG_2232.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg-MSmNxnuI9pAsH0HxTNc3piowUIlC8dbaNFQVrxixPaoncxSiGcZ5umvjFKn3yqMYyOUSjDg_73ykG9Wasyfk4S22exq50yWVf1bz-Jjv8_BA6u46r_Q0ipVGCjZH6C7fb5AAzRHKqfu/s320/IMG_2232.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi started eating cereal at six months. She liked it and took to eating by spoon readily. She progressed through all of the stages of baby food on time and did well until about 11 months, when we went through our first feeding strike. In retrospect, it was a mini strike. If only they had all been that minimally painful. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Happy after a good meal. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoYxSeke2QMUB7zxPWNkwPLd9KEERHBUEcZ79Ieff8YkSKrW4Fs6q2tG9T2aToWO_sHW5Hph8OiWCEg0H6unh60WAELdr9w0qwA9xE8CPDKeJV009OF8MxAfpVsapzeVoSGzvshH1WeJDs/s1600/IMG_2340.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoYxSeke2QMUB7zxPWNkwPLd9KEERHBUEcZ79Ieff8YkSKrW4Fs6q2tG9T2aToWO_sHW5Hph8OiWCEg0H6unh60WAELdr9w0qwA9xE8CPDKeJV009OF8MxAfpVsapzeVoSGzvshH1WeJDs/s320/IMG_2340.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here Daddy is taking a turn feeding her. It was really fun. We used to fight over who got to feed her. Then later on we would fight over who had to feed her. That made us sad when we realized the change and resolved to try to find joy in all of our interactions with her, no matter how mundane or tiring or trying. Easy to resolve, hard to do. We try. I do have to say, after so many miserable feeding strikes and the placement of a feeding tube I really honestly do revel in each bite of food she takes and swallows.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPHELeYnysFjE6Z6BnEm9v8oY3O6Htwjl8db0-GUUsD5FqDzjNjZ1pRNgDGbSEU8mqIFAG41-r2QzkBrI1A9pLqSPkeCFyzuahAseLJ1Bsrbe8RU2fBkw6gyu3cYqoa4iO0jLP3itziCZR/s1600/IMG_2384.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPHELeYnysFjE6Z6BnEm9v8oY3O6Htwjl8db0-GUUsD5FqDzjNjZ1pRNgDGbSEU8mqIFAG41-r2QzkBrI1A9pLqSPkeCFyzuahAseLJ1Bsrbe8RU2fBkw6gyu3cYqoa4iO0jLP3itziCZR/s320/IMG_2384.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She used to fall asleep eating all the time. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcSoEe69uaDi5B7vPHT087VjzQQmIDBqv02_PBDX2lPOVN5vWhNnmB72KjgdGaKHSnKWYH70Fz4omaXzN3_OX6c8Zd1X6XJRMJ87q6m4vrd-iRpGEzPTfKb0EhiHZhP3H9ijwfuM_w2h9q/s1600/IMG_2352.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcSoEe69uaDi5B7vPHT087VjzQQmIDBqv02_PBDX2lPOVN5vWhNnmB72KjgdGaKHSnKWYH70Fz4omaXzN3_OX6c8Zd1X6XJRMJ87q6m4vrd-iRpGEzPTfKb0EhiHZhP3H9ijwfuM_w2h9q/s320/IMG_2352.JPG" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Daddy's Best Friend.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Iwv1QFcRZfkLEXwJVT08FFc2FvWyGejJLWiO3fOxeRffV5akbg9qrJmhCLSzUO1NE94mNLn7N4pACkFzwe9y1Z2VCspProcfz-mNMYkyxUYQ6fIzXK49vbR2I0TMoT6D-wHtJ7ZZN4P8/s1600/IMG_2387.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Iwv1QFcRZfkLEXwJVT08FFc2FvWyGejJLWiO3fOxeRffV5akbg9qrJmhCLSzUO1NE94mNLn7N4pACkFzwe9y1Z2VCspProcfz-mNMYkyxUYQ6fIzXK49vbR2I0TMoT6D-wHtJ7ZZN4P8/s320/IMG_2387.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He loves her so much.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A series of silly faces. I was singing to her. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">On our way to cousin Grant's first birthday party. Naomi spent a lot of time with Auntie Jane at that party and had a good time. Auntie Jane has always been good with Naomi. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDlVWeEXUMmhDqcJUkHW2ZMVrw7IPP_pfEhQjGcqBSnJ4mt9ORC3-WuT8VxQyQGWtOl_KCjdPoXxRlW8rxQIHOXgbjAOz7Qvj8fKEQ9cu-NcO62wY8PntvZb9rWBYf9waCNpbEjfiWcCpg/s1600/IMG_2437.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDlVWeEXUMmhDqcJUkHW2ZMVrw7IPP_pfEhQjGcqBSnJ4mt9ORC3-WuT8VxQyQGWtOl_KCjdPoXxRlW8rxQIHOXgbjAOz7Qvj8fKEQ9cu-NcO62wY8PntvZb9rWBYf9waCNpbEjfiWcCpg/s320/IMG_2437.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi has also always loved her baths. She loves water in general. We had a gas log fireplace at that house and always bathed her in front of it. It was cozy. We also had a screened in porch. In warm weather she had her baths, and her meals, on the porch. She loved it out there. We need to put a porch on this house for her. Hopefully by next year she will have a porch and a porch swing here. <br />
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So there it is. Naomi at six months old. </td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com0tag:blogger.com,1999:blog-8265861613312682909.post-51888950093555283322013-04-29T18:04:00.003-07:002013-04-29T18:14:32.388-07:00Naomi's Feeding Tube Placement and MRINaomi had her MRI and her feeding tube placed a week ago tomorrow. The whole procedure went very smoothly. We packed the car Monday night so everything was ready to go Tuesday morning. We got up early and got out the door with no trouble. Naomi had no more incidents of stomach flu and her fever was gone. Everything ran like clockwork. The drive to Pittsburgh was uneventful. Traffic kept moving even though we were coming in during rush hour. <br />
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We checked in and waited only briefly until they called us back to prepare Naomi for anesthesia. Naomi was in a good mood. Rob's parents came to the hospital to help with Lydia so we were able to stay with Naomi until she was asleep. She had her MRI first and then went directly up to the OR to have her feeding tube placed. The feeding tube placement went perfectly. We were able to get lunch while she was under, which helped pass the time. They called us back when they got Naomi in to the PACU and we were there when she opened her eyes, at which point they transferred us to her room.<br />
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She had a lovely corner room with beautiful views of the city and the 40th Street bridge that was right next to a little sunroom. We were on the sixth floor, which has a playroom with a large koi fish tank, a large outdoor balcony garden and a beautiful library. As soon as she got awake in her room I was able to crawl in her bed with her and we snuggled for about two hours while she got awake. She awoke easily and with no crying. Then we snuggled more and watched shows. By 630pm Lydia had had it so she and I went to Auntie Sarah's house to stay the night. Rob stayed in the hospital with Naomi. He took he for a walk around the sixth floor that evening and out to the balcony garden, which she loved. She slept well that night and was up at about her usual time. She and Daddy went for another little walk around the hospital and got Daddy some coffee. She also pulled her IV out of her hand. Not purposefully, but Naomi plays with her hands alot and it came out in the process of her playing with her hands while she watched more shows. She watched a lot of shows in the hospital. In fact, she told me with her flashcards when we got home that she liked being in the hospital and wanted to stay because she got to watch a lot of shows and she thinks she should get to watch that many shows at home too. <br />
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They started running pedialyte through her tube that morning to make sure it was working and that she tolerated its use. It went really well. Lydia and I got to the hospital around 930am. Naomi was glad to see us, or at least me. Lydia brought her a little pink and white stuffed cat named Duchess that Naomi really likes. (She says kitties are her favorite animal.) We were able to give her some juice bubbas and a Splash (her formula drink) bubba too. They ran a formula feed through her tube later that day and that also went swimmingly. The process of placing and beginning to use a feeding tube is usually complex and drawn out but Naomi did so well that they accelerated all of it. Jenn, Naomi's nanny, sent balloons and a little yellow bear. My parents came for a few hours in the early afternoon, then Rob's parents came in the late afternoon. Rob and I were able to leave (with Lydia) for dinner, which was nice. Then Auntie Sarah, Uncle Brent, Grace and Margot came to visit in the evening and brought Naomi two more ballons, a heart ballon and a My Little Pony balloon which Margot had to keep reminding herself was not for her. Lydia and I got back to Sarah's house around 8pm and Rob stayed with Naomi again in the hospital. She had another good night and woke up happy and like her usual self. There were more walks around the hospital, Lydia got back down there around 10am and we continued to progress rapidly through the feeding tube protocol. Rob's parents came again to entertain Lydia. We were ready to be discharged by early afternoon and would have been home by 4pm except for a major SNAFU with the medical equipment company that was supposed to come to the hospital to deliver her feeding pump and other supplies. As it was, we got home at 730pm, all drained and exhausted and the medical supply company had someone drive over the equipment the next morning. <br />
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It was very good to be home. There were flowers and a unicorn pillow pet on the kitchen table to greet us from our lovely housekeeper Lisa. We enjoyed our regular evening routine, other than Naomi's bath, and were all in bed at our usual time. Unfortunately, all the time in the hospital and poor naps, etc, has both children off of their schedules so they are both waking up too early, but hopefully that will resolve in the next week or so. Naomi still has some restrictions, she can't take a tub bath for another week, but after that she will be able to do all of the things she normally does. We have been working on getting a routine in place for cleaning and maintaining her tube. <br />
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We spent yesterday over at Grandma and Poppa with all of Naomi's cousins and she took a long nap so she was off her usual eating and drinking schedule by last evening. Normally we would have been stressed at how we were going to get all of those calories and all of that fluid in to her by bed time, but instead we just hooked her up to her feeding pump while she watched a show and she got everything she needed easily and without incident. It was so completely not stressful at all. We do need to be careful the next two months that it doesn't get pulled out and that the stoma heals well, so that produces a little anxiety, for me at least. If it comes out within the first two months we have to go back to Children's Hospital Pittsburgh to have it replaced. After that, we will be taught how to change and replace her tube so it will be less of an issue then. We also have to wait two months to start the blenderized diet, at which point I will meet with a dietician to work out a plan. So all in all, it went as well, or even better than we could have possible hoped. And, we got good news Friday morning about Naomi's MRI results. Her MRI is unchanged from the last one she had in July 2010, which was unchanged from the first one she had in February 2009. So her brain remains healthy! No atrophy yet, which we hope means we will have a lot more time to enjoy our beautiful Naomi just as she is and always has been. <br />
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<tr><td class="tr-caption" style="text-align: center;">Waiting to be called back for anesthesia</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2jqkPUhsxCWqfuuVskSMJjsVB99UIDbglJ-EmBsetOqO65q-7d-2UQ2jqkziy9GlFLE9d7ZPC497y7qSqdk1L4Gj9yLa-O0ti_GJXGAWQ6lLA5K5UgrFfY6lVzLJ5ZeGRtmtgcvjJ-znc/s1600/076.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2jqkPUhsxCWqfuuVskSMJjsVB99UIDbglJ-EmBsetOqO65q-7d-2UQ2jqkziy9GlFLE9d7ZPC497y7qSqdk1L4Gj9yLa-O0ti_GJXGAWQ6lLA5K5UgrFfY6lVzLJ5ZeGRtmtgcvjJ-znc/s320/076.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Relaxing back in pre-op and waiting to be called for her MRI</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi fell asleep waiting!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">And stayed asleep while we dressed her in her scrubs for her procedures</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All done! Naomi in the PACU</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mommy and Naomi during their two hour post operative snuggle</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi out for her walk with Daddy Tuesday night</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Enjoying the Pittsburgh skyline with Daddy on the 6th floor balcony garden</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Relaxed and watching a show before bed</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Asleep for the night with Duchess and Clementine</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nana and Grampy entertaining Lydia at the hospital</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi showing off her new feeding tube</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Back home Friday morning getting in to our old routines</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi having her first home tube feeding Sunday night</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Up close on Naomi's feeding tube. Her cousins were curious. Still some bandages from the laproscopic entry site and adhesive gunk stuck to her belly</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi being silly when I asked her to smile pretty for the camera</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Just for fun: Lydia found the iPad! She seems to be saying "Ohhh! What's this?"</td></tr>
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com6tag:blogger.com,1999:blog-8265861613312682909.post-25500788377827559252013-04-22T18:39:00.004-07:002013-04-22T18:39:55.283-07:00Tomorrow is a big day (hopefully)Tomorrow Naomi is scheduled to have her feeding tube and MRI at Children's Hospital of Pittsburgh. It has been a rough couple days getting to this point. Last week, Naomi had a cold that lasted for over a week and was put on antibiotics. Inexplicably, even during the stuffy nose part of things, she was eating great - better than she has for 3 years. She would eat her breakfast oats, and then yogurt for lunch, and then would eat a baby food meal (chicken and stars for example) for dinner. She has not eaten that well in a looong time. It made us rethink putting the tube in. <br />
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Then the weekend hit.<br />
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I (Rob, Naomi's dad) woke up with a stomach flu on Saturday and was incapacitated for 48 hours. Unfortunately, Naomi began having horrific gas on Saturday as well and then began having what we refer to as "blow outs" Sunday evening. She has persisted through out the day today and stopped eating and drinking well over the last two days. I haven't had much appetite either, except I know that I need to drink something even if I don't feel like it. It is hard to convey that to Naomi. We talked to the hospital and unless she fevers the surgery should still be a go.<br />
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We are obviously nervous, maybe more about what the MRI might show than the feeding tube. Hopefully, we can get this done. Nothing is easy.<br />
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<br />Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com2tag:blogger.com,1999:blog-8265861613312682909.post-1592372777868197102013-04-10T18:25:00.001-07:002013-04-10T18:50:58.260-07:00Not Quite Five Months<div class="separator" style="clear: both; text-align: center;">
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Naomi has biweekly sleepovers at Grandma and Poppa's that she just loves. She's been going on her sleepovers since she was 19 months old. Every time I ask her with her cards if she likes sleeping over at Grandma and Poppa's she says yes and she always says she wants to sleep over more. She has her own room there and her own bed and gets lots of individual attention, which is just what she likes. The other grandchildren even refer to it as 'Naomi's room' and 'Naomi's bed.' I call after I think she should be asleep to ask how her evening went, and I call in the morning to see what time she woke up and what her mood is like. I usually get good reports, which means she is having fun and her grandparents are having fun with her, which I like. The sleepovers are not only good for Naomi, but they are good for us and for Lydia too. We get a break from the stress and strain of caring for Naomi, we get to focus on Lydia and Lydia gets to be the center of attention for a while. It also means we can do things that can be difficult with Naomi, especially with Naomi and her baby sister together, like going out to eat. We can keep Naomi somewhat happy in a restaurant if she isn't overly tired, has already been fed, has her portable show player for distraction and entertainment, and isn't assaulted by loud or sudden noises. It can be hard to choose a restaurant. It has to be loud enough that Naomi's noise won't ruin the ambiance for the other diners, but not so loud that she will be frightened. With Lydia, we have another variable to consider that we can't control. If Lydia starts crying, Naomi will most likely start her shrieking, which means we will need to remove her from the restaurant ASAP. Her shrieking is a lot like an air raid siren. To describe is as ear piercing makes it sound a lot more pleasant than it really is. I think we have attempted taking the entire family out to dinner once since Lydia was born and it was a major failure. So after we dropped Naomi off for her most recent sleepover, we headed over to a restaurant for a dinner out. Lydia was great the last time we did this, but not so great this time. As she is getting older she is less and less tolerant of being strapped into her car seat. She wants to be out and moving around. So there was some unhappy squealing and we had to take turns eating while holding her and helping her play with her toys. It was great, really. It was so just exactly how it should be with a not quite 5 month old baby. We were eating, playing with her, enjoying her, enjoying each other, laughing at her antics. I felt quite happy. Then I realized I felt happy and immediately felt guilty. I felt guilty because Naomi was not there with us and therefore not a part of our happiness. I felt guilty because if Naomi had been there we probably would've already had to leave because Lydia was being noisy and then we would have been disappointed and unhappy instead. And I felt guilty because even if she were there and dealing with the noise well, having to manage a second needy child would have distracted us from enjoying each other. Right now, in public, we can handle Naomi or Lydia but not Naomi and Lydia. The next emotion I experienced was profound regret and sadness. I thought back to what Naomi was like at not quite 5 months old and what our lives were like when she was not quite five months old and I wished that it had been like it is with Lydia how rather than how it was. I wished that Naomi did not have batten's disease. Naomi at not quite five months old was still mostly like an infant, though she had started doing some new things. And we were very, very sad. I was still in the weeping all day long, day in, day out phase. So far, Lydia seems to be doing all of the things that she should be doing. At this age, Naomi had started putting her hand on the breast when she nursed, she was bringing her hands together at midline, she was pulling up her legs and grabbing her knees, and she had rolled from belly to back one time. She occasionally smiled to my voice. She had not yet laughed, she was still pretty much visually unresponsive to anything but light, she showed no interest in toys. She didn't reach for us. She never has, in fact. She wasn't cooing or squealing or using her voice to get our attention. We had also by this time immersed ourselves in dealing with Naomi's diagnosis and lack of development. The biggest thing we did was to enroll her in Early Intervention Services. I was very anxious to get started with therapy in the hopes that I could maximize Naomi's potential. On that point I was powerfully determined. Determination is one of my better qualities. And I was determined that my baby would be the best that she could be. So of course I was anxious to get Naomi started with professional therapists. I can't say enough good things about the Early Intervention program, or the providers and therapists that worked with us. The entire program is designed to serve the needs of the child and the family in the most family centered way possible. All of the therapy occurs at times and places where the child would normally be and when they are normally alert and awake. Never at an outside site, never during a nap time, etc. So Naomi's EI evaluation happened in our family room where Naomi and I spent most of our time. It was a sunny late February mid morning. I wanted Naomi to make a good impression (I don't even know what that means except that maybe I wanted the evaluators to think she was cute) so I dressed her in my favorite outfit of hers at the time. Peachy pink fleece overalls with a little white with pink circle dots top and mutli-colored crocheted booties that she was given as part of her infant set with a hat in the hospital when she was born. It was an outfit I had bought for her before she was born and I thought she looked deliciously cute it in. I wore it on Lydia too, but it didn't quite flatter her the way it did Naomi. Different baby. I remember the evaluators putting Naomi through her paces and my heart just bursting with love for her...how sweet she looked, her darling facial expressions in response to various manipulations, the way I could see her trying to respond to the various activities. I knew, from my endless research, that Naomi was still pretty much at the level of a newborn, but being told that her developmental level was 0 months old/100% delayed in all areas was still a painful shock. No matter how realistic you are about your child's disabilities, or how much you have internalized your child's dismal prognosis, no matter how difficult day to day life with them can be, it never gets easier confronting the truth. It a painful reality I have to come to terms with again and again, every morning when I wake up, and through out every day. I am constantly thinking, 'Did this really happen? Is this really true? Is this really real? I can't believe this happened. Why did this have to happen? I wish this hadn't happened.' And on and on. Four and a half years later and it isn't any easier. True, I no longer weep every day, but tears are all to frequent still. And my mind still constantly searches for an 'out', for a way around this ugly truth and the ugly events I know the future holds. Therapy started in earnest in March. To say that Naomi's therapists were a huge part of our lives from that point until she aged out of the program at 3 would be a vast understatement. They were some of the only people with whom I felt comfortable. I didn't have to explain Naomi to them, children like Naomi are not strange or scary to them, they never tried to offer me comfort with unrealistically cheerful expectations, and they never sent me into the depths of despair with insensitive off hand comments. They accepted Naomi as she was and tried their hardest to help her advance to her next milestone. And at the same time, though I was bawling my eyes out every day, they were upbeat and cheerful in a way that was natural and soothing...not by pretending everything was fine, or assuming that Naomi was fixable or her problems curable, but by just being there and working with her in week in and week out in ways that were caring and compassionate. As a stay at home mother in self imposed seclusion with a profoundly disabled child, in some ways they were my only friends and were most weeks my only social outlet. And we were lucky to have the same group of therapists for Naomi's entire EI career...Marla Wyland for PT, SueEllen Foster for OT, Karen Anderko for developmental, Bev Moss-Oswalt for Social Work, Marilyn Neal for vision and, later, Becky Burns for speech. They all were, and are, wonderful people and gifted therapists. Naomi's favorite part of EI was Infant Massage. She loved it, except for arms and hands, which is so interesting to me since Naomi became so extremely hand defensive as she got older. So we started EI. We also took Naomi on a trip to a Catholic shrine in Quebec City, Quebec, St. Anne de Beaupre. Many people, including my mother, report miraculous cures after visiting this shrine. (See newspaper my mother below. You can click on the picture to enlarge it so you can read it.) It is why my name is Anne. So when we were given the awful diagnosis the first thing we thought, and what everyone in my family thought, was "We need to go to Canada." It was a great trip and one we have fond memories of. We drove. 12 hours each way. Quebec City is on the St. Lawrence River and in March it is still in the deep of winter. The amount of snow was incredible and the way the city dealt with the snow was fascinating. They don't plow the snow. They can't. There is so much that there is nowhere to plow it too. The non-plowed snow pack on the ground was as tall as I am...over 5 feet. People and businesses erect tents over their driveways and walkways to reduce the amount of shoveling they have to do. There were canopies 40 feet long from the front door of a house to the sidewalk. And the city has snow removal vehicles that are like a combination of an excavator and a dump truck. The snow is not shoveled from the roads, but excavated into the back of the truck and them dumped in the St. Lawrence, which was still frozen over. Like I said, it was fascinating. Being in Quebec, the city was French speaking and though there were people who spoke English there and in the province as we drove through it on the Trans Canada highway system, we usually had to ask for them. We made no concrete plans for the trip either, other than that we would drive up over two days, spend two days in the city and drive back over two days. We stopped in a hotel for the night when we got tired. We used the car GPS to find a hotel in the city,The Fairmont Le Chateau Frontenac. It's a beautiful old hotel, famous, and rather ritzy but because it was the off season it was inexpensive too. We enjoyed exploring the city. The food was unbelievably good. Naomi was actually very easy at that time. We could take her anywhere. In restaurants we laid her on the other end of the table and she would sleep. The trip was exactly what we needed at that time...the spontaneity, the freedom, the escape. The morning of the second day in the city we took Naomi to the shrine. It was an emotional experience, considering my family history and where we were in our lives with Naomi at that point. My Mother had instructed me to ask for complete Earthly healing for Naomi but all I could pray was 'Please don't let Batten's disease take her away from me. Just let me have her as she is.' We both felt good after the visit. When her diagnosis was rescinded 10 months later we wondered if it was the answer to our prayer. When it was reinstated 6 months after that we were devastated. But, Naomi is still today pretty much as she was then and I have to wonder if, in fact, my prayers were answered. I wonder if I was granted the miracle I asked for. If so, I am deeply thankful. Naomi is very difficult to care for but we love her as she is and would love to get to keep her as she is.<br />
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<tr><td class="tr-caption" style="text-align: center;">Lydia out for dinner with Mommy and Daddy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi in the outfit she wore for her Early Intervention evaluation.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi in an outfit I made for her before she was born. She was already enjoying doing her Big Kicks, just like she does today.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMpJ8MisU5iV50ZVzkDTJ7T86P2DKonzzhxAThdghaxPx4cUCDzAEO8jfDGCK1TTGkCDQ5eHEgZQs_QV64OuUQdOKlgCZktqziyOjZBDZGRIeAnvGvxLNDgaG3s2tLROJMGK2KrooSvku7/s1600/IMG_1655.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMpJ8MisU5iV50ZVzkDTJ7T86P2DKonzzhxAThdghaxPx4cUCDzAEO8jfDGCK1TTGkCDQ5eHEgZQs_QV64OuUQdOKlgCZktqziyOjZBDZGRIeAnvGvxLNDgaG3s2tLROJMGK2KrooSvku7/s320/IMG_1655.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and I were sitting in front of a big double window in our family room that she loved. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi in a sweater knitted for her by my friend Annie.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgoF60x3SfEwEYwQLQvdEkwaLaMUIA8WvHG01AOWnk8d_WpXkQhU0t0t2LFj6pV26OWXIVOr5b7Nm8m3hk55fcetCecuxwf6qhT_Ue4gldXjuyAE0OPcBWRnNJ1TaokifKRyEf8aq-Zimh/s1600/IMG_1657.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgoF60x3SfEwEYwQLQvdEkwaLaMUIA8WvHG01AOWnk8d_WpXkQhU0t0t2LFj6pV26OWXIVOr5b7Nm8m3hk55fcetCecuxwf6qhT_Ue4gldXjuyAE0OPcBWRnNJ1TaokifKRyEf8aq-Zimh/s320/IMG_1657.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi sticking her tongue out, another thing she still likes to do today.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOsfYF_ooPPLHmcOD2nHPGI2CWU-okPhkvairOkS0UfuPO4IIVWMaRau49b_jGUigKO1RsYFEV4noWXEnPBOFhzXXiP1zkAjrBRHsdEWsvJ0f8rwPO4AOnz0MeZpQBge1NnSe76m5I36wQ/s1600/IMG_1685.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOsfYF_ooPPLHmcOD2nHPGI2CWU-okPhkvairOkS0UfuPO4IIVWMaRau49b_jGUigKO1RsYFEV4noWXEnPBOFhzXXiP1zkAjrBRHsdEWsvJ0f8rwPO4AOnz0MeZpQBge1NnSe76m5I36wQ/s320/IMG_1685.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi enjoying being dressed in only her diaper. I hate the thought of a tube marring that little belly I've loved so much.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjssZc0_Zi8jvX4OgIDzo5AoMFvduDoghYlNuAfnYmL2bJQjM3smJREmaef-OnQ6Qh3DQpuRQ4UdJ6FwKDGI0LOzA0HbT5lxbbcEpD0JVPrQQnEQ225wNOxoxOuiEt1y8nRn6TmIZqIex-l/s1600/IMG_1697.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjssZc0_Zi8jvX4OgIDzo5AoMFvduDoghYlNuAfnYmL2bJQjM3smJREmaef-OnQ6Qh3DQpuRQ4UdJ6FwKDGI0LOzA0HbT5lxbbcEpD0JVPrQQnEQ225wNOxoxOuiEt1y8nRn6TmIZqIex-l/s320/IMG_1697.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing with Daddy.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinZGkarhUayFQi7NKStqSOhla_A84fm9su5It0j0rRA6swvkjMg5ogDg2YoSu_8EwnBJYPpsywR3BzIOPMY3KZV-i11yFhJiA1kxwuzNay8xDJ3p1aVmV2DAh3vI1S-RmL4dFlkJR_Kxcc/s1600/IMG_1705.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinZGkarhUayFQi7NKStqSOhla_A84fm9su5It0j0rRA6swvkjMg5ogDg2YoSu_8EwnBJYPpsywR3BzIOPMY3KZV-i11yFhJiA1kxwuzNay8xDJ3p1aVmV2DAh3vI1S-RmL4dFlkJR_Kxcc/s320/IMG_1705.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi with a blanket rolled up to keep her from turning her head. She repeatedly would get her head stuck, keeping it only turned to one side until I intervened, and then keeping it turned only to the other. So I kept a blanket on which every side she was preferring. I also would lay her so the light from the windows was away from the preferred side to encourage her to turn her head on her own, and would go in when she was asleep and gently turn her head the other way. This went on for months. I worked really diligently at it because I didn't want to add torticollis to the list of issues Naomi was facing. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Naomi draped on the arm of the chair. This was my modification for belly time to strength her neck and practice head control. Flat on the floor was difficult for her, and can be scary for the visually impaired, especially for a baby like Naomi who tended to keep her eyes downcast. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY511U78Z42Au0ZUmBJGdnFFro0HYKNZjdt-G8nzxFWwV14iQhkeGA8_AAgxvXu5B1LGpXqGilVoG1cNRZV59THKF81Ak45LZU-nXkzN7SVnhoxufqk8d8QARnKXS2mh-SPo5XT2RaXJjv/s1600/IMG_1763.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY511U78Z42Au0ZUmBJGdnFFro0HYKNZjdt-G8nzxFWwV14iQhkeGA8_AAgxvXu5B1LGpXqGilVoG1cNRZV59THKF81Ak45LZU-nXkzN7SVnhoxufqk8d8QARnKXS2mh-SPo5XT2RaXJjv/s320/IMG_1763.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More practicing. I've always loved this picture. She looks so sweet.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikkyq5FwBilQALna7IOTtAGfmPwCNMbDGDUuNvkOMFvr5wl_qHCjfT-0cZvJRH5np4f1LV2oH2Y_kkjkAUOSE5MdyrdEYPLt33q8VhNJ3Br7MY3ta3pyIY5QR2OiYoMe8SJLJgljUZxBLu/s1600/IMG_1770.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikkyq5FwBilQALna7IOTtAGfmPwCNMbDGDUuNvkOMFvr5wl_qHCjfT-0cZvJRH5np4f1LV2oH2Y_kkjkAUOSE5MdyrdEYPLt33q8VhNJ3Br7MY3ta3pyIY5QR2OiYoMe8SJLJgljUZxBLu/s320/IMG_1770.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Daddy on the couch, probably watching hockey.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmEtgaubYibDW6vz5EkDkecR2VAWiME_Llxp3GeLKmgNZLPOt6cCE7FrOybD_7TkHR9M-BoJOY4cggSf3WFyWAnEYAdi0OnPxgQoblZOExWtwRMp4v_grZzux2tseitSgGCgAmSMDt9qwm/s1600/IMG_1783.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmEtgaubYibDW6vz5EkDkecR2VAWiME_Llxp3GeLKmgNZLPOt6cCE7FrOybD_7TkHR9M-BoJOY4cggSf3WFyWAnEYAdi0OnPxgQoblZOExWtwRMp4v_grZzux2tseitSgGCgAmSMDt9qwm/s320/IMG_1783.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Daddy in a hotel in upstate New York on our way to Quebec.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My pretty little baby girl.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTEKtmGcZUGsduNNWDFw_Xl6JG3iDUeJgXVtcjmUPQF8nc8G5yJwOumvh3xxwaGzQqczB-X9C1T7GY51A49QBoOZCWLyNQBmaVUtnhcqqN_tTJxLxD3k9KASKruB6HIJ2hB_CU6plKO1qZ/s1600/IMG_1790.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTEKtmGcZUGsduNNWDFw_Xl6JG3iDUeJgXVtcjmUPQF8nc8G5yJwOumvh3xxwaGzQqczB-X9C1T7GY51A49QBoOZCWLyNQBmaVUtnhcqqN_tTJxLxD3k9KASKruB6HIJ2hB_CU6plKO1qZ/s320/IMG_1790.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The roofline of the hotel.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9cqw_Jjx2NOl3twAvpFnVi7Vg3xFGi0QuB89Nr1E_j84VYVPVH7ciRUnmx13qyU4HzbmoBMn7JZ8orVFp_Vq7G5qUvjm2zALFx7u-faGmp-QhI-hA9r6dQoLarJ5DpmCWvWRyPadX-GCw/s1600/IMG_1803.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9cqw_Jjx2NOl3twAvpFnVi7Vg3xFGi0QuB89Nr1E_j84VYVPVH7ciRUnmx13qyU4HzbmoBMn7JZ8orVFp_Vq7G5qUvjm2zALFx7u-faGmp-QhI-hA9r6dQoLarJ5DpmCWvWRyPadX-GCw/s320/IMG_1803.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy and Naomi in the hotel in Quebec City.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhANXe9v3IQzOINQeBba_LUgtK7OhHSipEAGV3YQP-1-o9x-pLvRhBsyOZIUWVWgA9YlJYiqdWNG0PlD2s3N5IrE-NKxVC8EU3GPhlde9S15Epkyr_6mBjQax0Jb07DUkgfdd_YhMuGI44H/s1600/IMG_1816.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhANXe9v3IQzOINQeBba_LUgtK7OhHSipEAGV3YQP-1-o9x-pLvRhBsyOZIUWVWgA9YlJYiqdWNG0PlD2s3N5IrE-NKxVC8EU3GPhlde9S15Epkyr_6mBjQax0Jb07DUkgfdd_YhMuGI44H/s320/IMG_1816.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On our way in to the church.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Inside the shrine. Flash photography was not allowed.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8X-WWyzpkmgFvvH-ylxxERM4kstoJEJeWrQhXxDshzelKP28TDxkrZn2sgTJOo6W6yseJzwawbckbeV-ERIM31tve0f66kmaQyFLO_Ase1NL5AkAKDm9um0T6d5Q7Ai-oDtpWu0hkZ1LH/s1600/IMG_1821.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8X-WWyzpkmgFvvH-ylxxERM4kstoJEJeWrQhXxDshzelKP28TDxkrZn2sgTJOo6W6yseJzwawbckbeV-ERIM31tve0f66kmaQyFLO_Ase1NL5AkAKDm9um0T6d5Q7Ai-oDtpWu0hkZ1LH/s320/IMG_1821.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking aides left behind by those cured of their ailments.</td></tr>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHWhZyKRalmxMEd3AVQYdHm087U6_Iir-Wk71NiBpsTvJN0CFrpl0Ig8Z2_E_0BGqWbcfskgtJaTOP8Zgef6gvNZo0QbiS9_F0ygvayf2NTtyeuxd_QK4rb01W4TRz1XsgurRJgv0tBF1q/s1600/IMG_1826.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHWhZyKRalmxMEd3AVQYdHm087U6_Iir-Wk71NiBpsTvJN0CFrpl0Ig8Z2_E_0BGqWbcfskgtJaTOP8Zgef6gvNZo0QbiS9_F0ygvayf2NTtyeuxd_QK4rb01W4TRz1XsgurRJgv0tBF1q/s320/IMG_1826.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA5FgwjwDHTM4q-ko1kssKabVFxMx5eMNKepfv5VSxFdtZqAs2ufkJlCKj_lcaIbwKcFobSSP2SxCfiMfYsifxYRnbMXFjmIasu_V6exW6OgLo62WKQtUSkCpAYNi0ucWir7KZsz6vCWKP/s1600/IMG_1830.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA5FgwjwDHTM4q-ko1kssKabVFxMx5eMNKepfv5VSxFdtZqAs2ufkJlCKj_lcaIbwKcFobSSP2SxCfiMfYsifxYRnbMXFjmIasu_V6exW6OgLo62WKQtUSkCpAYNi0ucWir7KZsz6vCWKP/s320/IMG_1830.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy and Naomi outside St. Anne's afterwards.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEwma6vvHKt6WEgjera29wSzEeW4WHaWqL0hhd6PU8ghNWnd5Sl4xVBTENU1gqul9_2n_g-Bm4b9Z7HlK7KG_iTPjmYCMWy5CmEVEvwMgl91XqMNQH-nMPn5Jgl77tkm9mtdAJ5eAJjcJ6/s1600/IMG_1836.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEwma6vvHKt6WEgjera29wSzEeW4WHaWqL0hhd6PU8ghNWnd5Sl4xVBTENU1gqul9_2n_g-Bm4b9Z7HlK7KG_iTPjmYCMWy5CmEVEvwMgl91XqMNQH-nMPn5Jgl77tkm9mtdAJ5eAJjcJ6/s320/IMG_1836.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The St. Lawrence River.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy1FtoVYDC52XZrc3_Lk-0GpHgxWIRrnVBKgXNwthD1x2r-EcPer_nmU9Gpp8OocwZePOFKv3cnwuQb5ZLhtc2XOcGyXsWMHa5jMoGx4W5k6NuXphyphenhyphenawDagdWqKYi50QgubW1fgFCTMYNt/s1600/IMG_1837.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy1FtoVYDC52XZrc3_Lk-0GpHgxWIRrnVBKgXNwthD1x2r-EcPer_nmU9Gpp8OocwZePOFKv3cnwuQb5ZLhtc2XOcGyXsWMHa5jMoGx4W5k6NuXphyphenhyphenawDagdWqKYi50QgubW1fgFCTMYNt/s320/IMG_1837.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Quebec City.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3jeyNwDJg0CoNxXN2i3S9_0LXf3e_ouwybTbI9bpiJZezimtitotWhsec5N69D55otfjY0WdS1xkT60Ezyg73HcR2vhiNjR22F8A1a77GtO95WsIjtKV9JB6oYZQpnAoZ1BWA_d-K32zQ/s1600/IMG_1845.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3jeyNwDJg0CoNxXN2i3S9_0LXf3e_ouwybTbI9bpiJZezimtitotWhsec5N69D55otfjY0WdS1xkT60Ezyg73HcR2vhiNjR22F8A1a77GtO95WsIjtKV9JB6oYZQpnAoZ1BWA_d-K32zQ/s320/IMG_1845.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Downtown.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-ZEsKzO0mBI4Zq0XtFWrUybxWYsS7VUGurxpPhifiW6ZNEkxq0QsECQsIQa7b4yUV67kPzNFzGNjDeKUBqnwS5faGqNPwymU3ElT_Lcq04mwMTDSfQeZ0JWqW4eguY5BSjIIDWKP1HscK/s1600/IMG_1848.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-ZEsKzO0mBI4Zq0XtFWrUybxWYsS7VUGurxpPhifiW6ZNEkxq0QsECQsIQa7b4yUV67kPzNFzGNjDeKUBqnwS5faGqNPwymU3ElT_Lcq04mwMTDSfQeZ0JWqW4eguY5BSjIIDWKP1HscK/s320/IMG_1848.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Shopping District</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-97siA5D-rD9m7u8ocfsfHmEG3gfVVQZjUtxcKhBox1pSknjscbW1RexIvUd9RafBDhZx4XQ3I9hZjiI2TvoLbO57d-ivfgpGR47y2TLgluLMfKJpPtj1G8xi6Bvs8G-7DUW-B06vv2wP/s1600/IMG_1853.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-97siA5D-rD9m7u8ocfsfHmEG3gfVVQZjUtxcKhBox1pSknjscbW1RexIvUd9RafBDhZx4XQ3I9hZjiI2TvoLbO57d-ivfgpGR47y2TLgluLMfKJpPtj1G8xi6Bvs8G-7DUW-B06vv2wP/s320/IMG_1853.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Fairmont le Chateau Frontenac</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyjnW_3ztuZFjcm4OebwdKZ9XDJ2xyXVUPc1Ef3fm5JejamS0on_nqDSCDP9nr53QdCIJFmpUWtX-dcKwod2rIRZ7xbQRBDFdqLJwZnyQASpCvaRv3nrYgMxwSPgj9btGG9I_94hER6h6K/s1600/IMG_1877.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyjnW_3ztuZFjcm4OebwdKZ9XDJ2xyXVUPc1Ef3fm5JejamS0on_nqDSCDP9nr53QdCIJFmpUWtX-dcKwod2rIRZ7xbQRBDFdqLJwZnyQASpCvaRv3nrYgMxwSPgj9btGG9I_94hER6h6K/s320/IMG_1877.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi pulling up her knees! This was new just on the trip.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTJcXE1JTtEYB3ajytkgkXrUnMvgXfQRKCg694_0HNvnzHvu2Mxl6M4muBp3BuolJf5Wc-n1p1wTl1B5whrVwDAA5rxELH1s8EtQ4KYsuEx3pLCRNNVWcK0sDxJ1vYwXS9ZMfuAP63z5kn/s1600/IMG_1880.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTJcXE1JTtEYB3ajytkgkXrUnMvgXfQRKCg694_0HNvnzHvu2Mxl6M4muBp3BuolJf5Wc-n1p1wTl1B5whrVwDAA5rxELH1s8EtQ4KYsuEx3pLCRNNVWcK0sDxJ1vYwXS9ZMfuAP63z5kn/s320/IMG_1880.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More Big Kicks in Quebec City.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih3Fvyu_pGjgZBiT9x_On3hFR78nRBQKWPyQSbKujFYXPJ-PbMo6aaX1TDVlwOWBd7hbss182tb8jXoAIndltxAa96nmvvEH5Xgr79llZQ-YF8qK3eO995A21l7x82Y8IYYdI_sfufS2c2/s1600/IMG_1892.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih3Fvyu_pGjgZBiT9x_On3hFR78nRBQKWPyQSbKujFYXPJ-PbMo6aaX1TDVlwOWBd7hbss182tb8jXoAIndltxAa96nmvvEH5Xgr79llZQ-YF8qK3eO995A21l7x82Y8IYYdI_sfufS2c2/s320/IMG_1892.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love this picture. There's the big window she loved.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4cbppMzk7zlgQnWnSZ2777lkWhsDTngXueFYbaG4REvJTqAg9K3Du1o0FtfAZplrYXy3x1t9XWYPpzaCTDetFPwA-hRjI2CpvDlYxKOKdVfCVQHhGKnJTJl8SUdJwvQnw0yBpNja-a1Ux/s1600/IMG_1946.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4cbppMzk7zlgQnWnSZ2777lkWhsDTngXueFYbaG4REvJTqAg9K3Du1o0FtfAZplrYXy3x1t9XWYPpzaCTDetFPwA-hRjI2CpvDlYxKOKdVfCVQHhGKnJTJl8SUdJwvQnw0yBpNja-a1Ux/s320/IMG_1946.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I took a LOT of pictures.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnfiW9EZQ_7yZBe0oIc1osWL32cgoIGAulXTAAyLVQt7f_wMgYDsjI3L86-O7V-5qve2oZdHDFAL0CcDns91vo1NLm13aLggvio-vpjsfUJZXNQISQlaphxkZ82AoOFDG_1o9pz_emQ722/s1600/IMG_1981.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnfiW9EZQ_7yZBe0oIc1osWL32cgoIGAulXTAAyLVQt7f_wMgYDsjI3L86-O7V-5qve2oZdHDFAL0CcDns91vo1NLm13aLggvio-vpjsfUJZXNQISQlaphxkZ82AoOFDG_1o9pz_emQ722/s320/IMG_1981.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sleeping beauty.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWC0YhHbMgQ2ZewxEkMQUSZ1lHtuncur__1xUW613DSrqj3pViQg-COxR_BuGXvv7Uv0y6j-PjgqEovnPTVuNsVdWFCnwCm1xivh1COm3sti7D63oJzKoPILkY7rISJg59TPEWiGHEvwfk/s1600/IMG_2004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWC0YhHbMgQ2ZewxEkMQUSZ1lHtuncur__1xUW613DSrqj3pViQg-COxR_BuGXvv7Uv0y6j-PjgqEovnPTVuNsVdWFCnwCm1xivh1COm3sti7D63oJzKoPILkY7rISJg59TPEWiGHEvwfk/s320/IMG_2004.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying to strength her trunk and neck.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHi21EKpnUtulRiyWf-xH_RPABIayvw7Rxoc8614JOvFszYg-nEgV45_PL6bfUN1kZXFaCL-ihiAwPUCSoDhRCgM4QocelodRph8mP2AH_EeUIVoyFxzmDkUHiRvjisBUCcaJBnC4iI76u/s1600/IMG_1999.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHi21EKpnUtulRiyWf-xH_RPABIayvw7Rxoc8614JOvFszYg-nEgV45_PL6bfUN1kZXFaCL-ihiAwPUCSoDhRCgM4QocelodRph8mP2AH_EeUIVoyFxzmDkUHiRvjisBUCcaJBnC4iI76u/s320/IMG_1999.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi and Daddy relaxing on the porch on the first warm day of spring.</td></tr>
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Anne Caugheyhttp://www.blogger.com/profile/18125923762952004690noreply@blogger.com2