Loving Naomi Kathleen: October 2012

In my corn on my birthday getting a card and a present from Mommy and Daddy.

I decided to throw myself back into my corn and do some of my yoga. I think I am hilarious.

Oh, my new pillow pet dream light! I love it. I love stars and I love lights so this was the perfect present for me. Daddy is so smart.

They sat me back up so I buried me hands as deep as I could into my corn. This still amazes my parents who wish my Early Intervention OT SueEllen could see this.

Laughing and having fun in my corn on my birthday!

You might not be able to tell, but this is a picture of me 'using my voice' as Mommy likes to say, or basically vocalizing aloud to express my happiness. They seem to think it's pretty cute, so I do it alot.

Here's me getting read to go trick or treating on Halloween (observed) a few days after my birthday. In my hometown, trick or treating is always on the Thursday closest to the 31st. No one seems to know why. This was perhaps the most pleasant I was all evening. We didn't know it yet, but I was coming down with a UTI and didn't feel so good so I was a bit of a crank, to say the least. Mommy and Daddy didn't suspect anything was up, though, because I am always a bit of a crank to say the least on most all holidays and special occassions. It is times like these that not being able to talk causes problems.

Here is a side view of my Pink Rainbow Lion costume. Have you ever heard of such a thing? Neither had I. Mommy comes up with some silly ideas. Even if I weren't coming down with a UTI, wouldn't you be kind of cranky if someone dressed you up in something so ridiculous?

Visiting with Papa on Halloween. I take back my earlier statement about being most pleasant just as I was getting ready. Papa took me out on the porch swing for a while and I did enjoy that.

This is after I came in from the porch swing. I got mad. It happens.

Trick or treating at Uncle Joel's. That's him in the background giving out candy and stuffed animals. His dogs get dressed up too. I sat here for a while and watched all the other kids go by dressed up in their costumes. We also visited Auntie Laura and her family, Great Aunt Mary and Great Aunt Jerry. Oh, that was another pleasant moment that evening. Aunt Jerry complimented me on my beautiful hair which made me so happy I snuggled in to her and affectionally patted her face. I like being told I am beautiful.

Here is me a few days after Halloween (Observed) getting ready for my birthday party.

I woke up with a 103 degree fever that morning and Daddy took me to the Doctor where I was diagnosed with a UTI and started on antibiotics. So I was hot and not feeling good at all.

You can see how sad I was.

Then I fell asleep just as the first guests, Auntie Sarah and her family, arrived. I was transferred to Mommy and Daddy's bedroom and everyone got to peak in on me in my beautiful dress. I slept for over two hours. Then when I woke up I cried about everything and hated my party. I told Mommy later with my flash cards that I did not like my party because there were too many people at my house. I also said I wore a beautiful dress but didn't like it either. I just wanted to wear my diaper. Maybe that was because I was so hot with my fever?

Getting ready for cake! I don't have cake because I am allergic to dairy and eggs, and also I only eat a few foods and cake of any kind is not among them.

No one actually sang happy birthday because I cried over everything all day. The grown ups even kept the kids in the other room to avoid any sudden noises that might start a new round of crying. All the adults whispered very quietly and snapped pictures. Yes, I am very used to being catered to like that. It's just how I like things.

With Mommy and Daddy.

Hi Daddy. I love you Daddy.

Mommy loves me. Right after this I melted down and had to be put in my bed for some alone time, which I liked. Daddy brought me down after everyone left and as soon as I saw that the house was empty I gave a big smile and was happy and pleasant all evening, even if I was hot and not feeling so good. Sometimes when you don't feel so good you just want to be home with your Mommy and Daddy and wearing comfy pajamas, not all gussied up in some silly fancy dress Mommy made and entertaining visitors.

Here is Uncle Joel playing with my cousins Margot, Grant and Grace in the corn bin he made me. It was a huge hit. Daddy tried putting me in the corn bin with them, but I got mad and had to be removed. Actually, it wasn't long after that that I spent some alone time in my bed.

Saturday was the big day! The Beating Batten 5K took place in Staunton, VA and raised over $5,000 dollars for the Batten's Disease Support and Research Association. The race culminated months of hard work by the organizers, principly Ms. Lena Fairless - the Naomi Kathleen Caughey Foundation Secretary. She and her helpers, including her husband, Dave Rylak and father - in - law Al Rylak as well as many other wonderful volunteers were up in the predawn hours getting the course set up at Gypsy Hill Park. In addition to the race itself there was a silent auction and Tastefully Simple table as well! We also received donations online and through a jewelry sale.

Naomi and her dad and both sets of grandparents made their way down on Friday. Naomi's mother was not allowed to go because she was 36 weeks pregnant which was a big disappointment, but also very exciting for our family. We had a lovely dinner that night and were joined by one of Rob's good friends from college, Beth, and her husband Matt, who came down all the way from Maine.

The day of the race started early, while it was dark. As the sun came up the weather warmed up and a number of people from all periods of our lives were present. There were family, friends from college, residency, Anne's school, The Covenent School, when she lived in Virginia and many other new friends who came in support. It was amazing to see everyone and it is just unbelievable the number of people that Naomi has touched.

After I read a brief statement of thanks that Anne wrote, Naomi led off the race in her stroller and was pushed the entire 5K by her grandparents (she needed shows to watch to make it). The race went off without a hitch as did the silent auction. It was really a perfect day. Anne even got to participate using Facetime on Al's IPAD! Afterwards Naomi took (begrudging) pictures with her fans.

Thanks to everyone who participated