Late Spring Fun

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.  

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.  

Naomi at the fish pond.  

The little pond.  Just right for a group of preschool kids. 

Naomi is loving it.  We were outside, the sun was shining and we were together.  It was perfect.

Naomi's fish!  They all got thrown back in. 

Naomi with her medal.  

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!

 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.

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.  

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.  

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.

And now some random updates.

Grandma and Poppa's pool is open!  And we have been swimming.   Naomi still loves the pool.

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.

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. 

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.  

Swinging in the yard.  

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. 

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.

I just love her little face.

So cute.  So sweet. 

So silly.

Busy Days

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.

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.

Around six months we started to see happy smiles fairly regularly.

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.

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.

Why is a baby in jeans so over the top cute?  

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.

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.   

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.  

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. 

This is one of my favorite pictures of Naomi.  

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.

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.

Another posed picture.  

Dying Easter eggs on her first Easter.  Margot helped.  

As did Grace, Uncle Brent and Auntie Sarah.  We did this first thing Saturday morning when we woke up. 

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. 

Her first Easter basket.  The candy was for me.   The bunny is in her bed with her as I write this. 

Easter egg hunt Easter morning in our front yard.

She fell asleep getting ready for church.

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.  

Happy after a good meal. 

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.

She used to fall asleep eating all the time.  

Daddy's Best Friend.

He loves her so much.

A series of silly faces. I was singing to her.  

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.  

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.

So there it is.  Naomi at six months old.