Avery’s medical update

 

Avery has had a weird rash on her arms for awhile now..but a couple days ago I noticed one of her arms the rash was getting darker. So I panicked..I knew what kind of rash it was..It was a petechia rash. It looked like little tiny purple pin pricks. I knew one of the causes of why someone gets petechia rash..so I literally had an panic attach in minutes..my mind instantly thought the worst. (isn't that what we always do) For those of that do not know it can be a symptom/sign of leukemia and since leukemia is more common in children with ds that is why my mind instantly thought of that. Avery gets her blood checked every 6months to a year as a precautionary. But I remembered we hadn't had it checked in awhile but now thinking about it hind sight they did check it before her surgery.

She was scheduled to go to the sleep dr in the morning so I knew I would just ask him about it. So when we went to the dr the next day he basically said that he didn’t really know too much about petechia rash but that he thought it wasn’t a big deal....I wasn’t really happy with his answer so I of course couldn’t let it go..so I walked out of there and called Avery’s pediatrician. They told me that I could get in right away to come on over..so that is what I did…He instantly checked her CBC count and palette count..and we waited..which seemed like forever..and prayed over and over..please God don’t let this be happening to me..He finally came in and told me that it came back normal..Normal range is 140 something and hers was in the 200’s. BUT he does not know why she has a rash like that..and wants answers..so he is referring us to a blood doctor so he can rule out anything..or test for more things if we need to..he told me I don’t even know where to start and what to test for so I would just feel more comfortable if I referred you to a blood doctor bc they will know. So that is what we are doing..we will wait..of course I still am a little panicked about it bc I have read many cases (Google is not my friend and I don’t know why I havent learned this lesson) where the CBC count came back normal many times until it (leukemia) was found. But we will pray and trust God that his will be done. The blood doctor will be looking for other blood disorders or other auto immune diseases. Right now I just feel like screaming please give this child a break!!!!!  She has been through enough!

Here’s a picture of her rash..(dr told me to take pictures)

 

Update on her sleep dr…she has been off her sleep machine for awhile bc I have been waiting for supplies..they cant get it together and get me the right mask..and hers of course is broke..so it showed the dr a big gap off of the machine..We just started back up a couple of days ago..so he wants to see us back in six weeks and see how she is doing again..and we are suppose to do a repeat sleep study done pretty soon..one where they will do part of the night with out the cpap machine one to see if she has improved at all…(praying she has;) and then the other part on her machine..and that way if she hasn’t and needs to be increased or decreased some they can play around with it in the sleep lab. We have taken a few steps backwards when it comes to this..but with her in a cast and then waiting for supplies..hopefully the next six weeks she does good on it..where are we at?? Well I put it on when she goes to bed..she doesn’t fight putting it on at all..and wears it for awhile..but I don’t know how long bc I always have to put it back on her when I go to bed..but then its up to her how long it stays on for the rest of the night..it is NEVER on her when she wakes up…so sometime during the night she takes it off again..not sure if she literally takes it off or if it falls off with all of her moving around at night…I'm curious if a weighted blanket would help keep her in one spot..maybe she will get one for Christmas…

(I posted two posts today…look at the one below this for a hip update;)