Well I thought I would give a little update about Jordyn's appointments. She had her overnight sleep study a few weeks ago and today we met with the doc. to get the results. They said she has a little bit of central apnea. Nothing too serious. They are leaning even more towards acid reflux as the cause of her waking up. (Jordyn spits up pretty much all day long now...it has gotten even worse in the past few weeks) They suggest we see a GI doctor. So, now I just have to get that set up. Most likely they would do tests and possibly try meds. to help. I know they also do surgery to fix the problem, but we aren't even thinking about that right now.
We also went to a geneticist a few weeks ago. He suggested doing four different tests. Two of them were really rare diseases. We already tested for them and the results were normal. Now onto the next two tests. It's actually two tests for Rett Syndrome! If you've been following Jordyn's testing closely, you know that MANY specialists/doctors have thought Jordyn has Rett Syndrome, but the test for it came back negative. Well, in the past year they have discovered two NEW ways to test for Rett Syndrome! So, we'll send off some blood work for those test. They said it will probably be two months before we get the results. And they also told me not to get my hopes up. With every test we do, half of me thinks,"This test is definitely going to come back normal." and the other half of me thinks,"This is it! This is going to be the disease Jordyn has!" So I guess half of me already has my hopes up! We'll let you know what we find out.
I guess now all we have to do is see a GI doctor now. Other than that, we just have to get Jordyn to stop pulling out her hair when she is mad. Poor little girl doesn't have very cute hair anymore! Maybe I'll post a picture soon so you can see what it looks like.