Ethan Update

I have been doing well off my meds since the middle of November.
However I am still on Creatine, Carnitine, Vitamin C, Omeprazole and Domperidone.

I contracted a cold last week, had a runny nose, cough and hands full of boogers. I spread my sickness to daddy and grandma, but somehow mommy was left unscathed. We left my blood test to this week as mommy thought that colds could alter the levels. However, we since found out that colds don't alter carnitine levels.

Mommy and I headed to Mac on Monday for the blood test. She reassured me that there would be no head pokes, and they could draw the blood from my arm. I was happy with this fact and agreed to go.

The blood line was ginormous! The number was at 33 and we pulled a 55. Mommy read the sign that said "If you have cold/flu like symptoms please ask for a mask" She knew there was absolutely no way that I would keep a mask on my face, so we waited in the hallway instead.
Mariya ran into us, and was excited to see me! She said I was looking good and couldn't believe I was doing so well. She said that the genetics department has been super busy and that we would be in for genetic counseling in the new year and that mommy and daddy would have blood taken. Mommy told her happily that she had already given her blood!

A few hours later I was laying down in a crib with tourniquets on my arms. I was not bothered by this as I was still chatting to mommy. Then I heard the blood lady say she was going to find someone to help with the holding.... I knew this meant business and as soon as the tourniquet went back on my arm I was screaming! Mommy was instructed to hold my legs and chest down. She told me that I was super strong and that she had to use pretty much her whole weight to keep me from moving.

Another thing to note is that Dr. T had ordered Full Carnitine, which apparently isn't orderable any more since Sept since it costs so much to run, so they took blood to run my acetylcarnitine. Hopefully this is okay with the Dr. as I don't want to have to have blood taken again.

Dave (Infant Development) did my 8 month assessment last week and I scored consistent to my 6 month assessment, however my communication mark went down a little as I was not saying any consonant sounds. He also noticed that my pincher on my right hand isn't as developed as my left. It must be due to my middle finger issue.

8 Month Assessment

A few days after Dave assessed me, I started to say "ba"!  Mommy has also started some signs with me, however it is hard for me as my shoulders are weak and I don't like the effort that goes in. She's teaching me up, which I normally flail around to, so we consider that a win. She is also teaching me book, ball and of course hi and bye.  I don't quite understand these but hopefully I will soon.

I have been enjoying my oat cereal, but had a set back when I got sick and would hardly take any cereal. I was still given a few spoons a day, but I had lost my love for it. I still enjoyed my sippy cup with formula and mommy had started to give me sips of water from her glass. Which I love! After I started to feel better last weekend I started to eat my oat cereal again, which was good timing because my swallow assessment was today!

Mommy told Cheryl and Laurie about my sippy and glass adventures. They especially liked how eager I was and I presented good clinically. So they just told mommy to proceed with extreme caution... which she has been doing anyway. Onto my cereal assessment, I still looked good so I have graduated to orange vegetable purees! Of course we will have to add water to thin them down for me. But! I am excited! There was talk of getting me another Barium swallow study to assess my ability to swallow thin liquids safely. We'll keep you posted if they actually do set me up with one. Laurie indicated that it would probably take 2 months to set up a time.

That is it from me!

Merry Christmas and Happy Holidays!