Friday, July 4, 2008

We had an appointment yesterday with Brooklyn's geneticist. The first thing we discussed is that she has had no head growth since January. No head growth= no brain growth. :( I'm becoming more and more worried that she isn't going to progress much from where she is now which makes me so sad for her and for us. And of course the question is why isn't her brain growing normally?

At our last visit she asked if she could bring Brooklyn's photos to a seminar out of state for undiagnosed children. Unfortunately nobody there had any ideas as to what she may have. Another dead end.

After taking a few more measurements of her face and examining her she said that she had a few more tests she wanted to do. One was another test related to Rett's Syndrome and the others I'd have to go look at the paperwork cause I have no idea what they were. We had her blood drawn and she had a urine bag yesterday that just did not work so I'm going to have to go to a lag and get some more and maybe try them at night when she isn't moving around so much.

Maybe these tests will be our answer though I'm not counting on it. It is so depressing, I feel like we just go around in circles over and over again.

Oh, and you want to hear something funny! Remember the woman I saw at Dev's therapy who had a sense it was chromosome 36 that we should have tested further? Well when I asked about it she said there is no #36 chromosome. We have 46 chromosomes that are arranged in pairs. Therefore, we have 23 pairs of chromosomes. When they preform genetic tests they test each pair. Since the 23rd pair of chromosomes is the sex chromosome, there are only 22. Duh! What a quack! lol

1 comment:

Karen of Sillymonkeez said...

Again I am so sorry about your hitting one wall after another. It's good that the geneticist hasn't run out of things to test for. I'm crossing my fingers and toes that this next round of tests reveals something.