CHOP Bound this weeek

9/11/10 in Gettysburg, PA

So this week, we head up to CHOP for two days to meet a few specialists. On Thursday, we head to Immunology and sit down with the doctor to review Liam's previous labs and try to determine what is happening. From what she told me on the phone, its going to require quite a few blood draws and actually putting his blood in a lab for several days. Doctors will watch his blood to see how it produces, splits, builds, etc and they can then determine if it is a result of function or reproduction. We did learn that the gland that produces immunoglobins was actually removed during his open heart surgery but from the research I found, that typically doesn't affect it later on. The body should have all the immunities it needs when you are born.

On Friday, we need to meet with the ENT speciality group. When Liam was on the breathing tube and CPAP machines during his chest drainage, his nose got beat up both on the outside and inside. He has a scar along the bottom of his nose on the outside but internally, one nostril is slightly flopping over and much smaller than the other. I hope this is something that is ok- he hasn't had breathing issues outside of typical DS concerns. If not, it may require surgery.

While we are at ENT, we need to have his hearing test. We had it done here about 3 weeks ago and for whatever reason, on one of a handful of tests, his left ear couldn't be read. Unfortunately, it was the test that can determine hearing loss and it wasn't a fail or a pass. The doctor told me she thought his hearing was fine, particularly because of the other tests and that he hasn't had any ear infections so far, but she thought it would be smart to ask CHOP to take a look too. Fingers crossed it isn't hearing loss already. A lot of DS kids do have some but with the way he interacts, talks and wakes up when I walk past his room, I'm hoping its not the case.

There are so many parents in worse spots than this but I think living alone with Liam before these appointments is making me get inside of my head too much and anxiety might be creeping up on me. We had 10 weeks of hell and months of eggshell living. I just can't imagine going through more issues and I admire some amazing friends who have gone through it, over and over. I don't think I'll ever relax around him and I don't think I'm supposed to. The immune issues are the most worrisome. I really don't want to be a bubble again, and the last few weeks, we stepped backwards a little and played it safe again.

Well, thats the update for now. I think its going to take a few days/weeks to get answers on the immune system but the important thing is to get an answer for the cause, especially before the flu season.