Aaron's TCH visit

[Paula]

Hi all, we got back last night from Houston. It is sooo great being home. Well, our visit went well. We are still waiting for the final word for primary or no surgery. Kind of hard to type with crossed fingers! The week leading up to time to leave was really bad. I had no idea where my head was. Crying was a nightly ritual, as was the puffy eyes in the am. The am we were leaving I got out of bed 1 hour later than anyone else. You know separate yourself from the situation and it don't exist, then you don't have to deal with it. Right? Well, that was my reasoning. It was just too painfull to deal with. I had many nights of "poor me and Aaron" and many nights just filled with anger of asking how it can be that a loving God that I knew oh so well would allow for the babies to be injured to this extent. Asking what happened to the "Come to me the little children"? A paralyzed person got up and walked cause he demanded. How could he allow this to happen?! Then I went off with There is no God, it is all a hoax. I guess you can say I was pretty bad. Getting on the elevator at TCH was the hardest for me. The trip over I was trying to be strong. Making dumb remarks to try to make myself laugh. Every floor higher we went I cried more and more. There we were, the moment of truth. Would my tiny precious little boy be spared the pain of primary? I knew in my heart that he would need it, his bicep has not grown, he has his elbow out to the side so much. The neurologist reported that he had no bicep reflex. The pain and fear were almost unbearable. The Docs were great. They must have felt my fear and made me feel so relaxed. Lisa Davis was wonderful. She made us feel special. At first they were not very hopeful they wanted to schedule primary for in 2 weeks. I about fell to the ground and started to get dizzy but somehow I held my posture, nobody noticed I was close to falling apart. Then Dr. Nath said he wanted Aaron to get a EMG (?) they stuck a needle in his bicep for one of the tests and we saw alot of lines on the screen, which was good. Lisa said she did not think he would need primary, she could not speak to the Doc about results then but would get back to us later. The plastic surgeon that saw us first was nice, he said that Aaron had a small contracture in his elbow area. So all in all I guess we did get good news. 1 less surgery. Mod Quad will be at around 14 mos. in October '02. He was given a presription for a TAP splint. What is that? I guess I should of asked then but I had no words at the time.
---Paula

[SarahR]

Hi Paula,

I'm glad you hear that your visit to TCH went well. Hopefully, Aaron won't need primary surgery! Please keep us updated once you know either way.

A TAP splint was suggested for my daughter to help her with supination. Check out Francine's website for details on ordering one. Smith & Nephew make them. When we checked, their catalog only showed sizes that were way too big for infants. Instead, we went with a McKie splint with a supinator strap (they look identical to me) - it can be ordered in really little sizes and different colors. www.mckiesplints.com

I posted a question about TAP splints a couple of weeks ago and received some good feedback from other parents. You should be able to get back to the messages. Maybe the info will help you too.

-- Sarah --