So Much Going On

Yesterday was Zach's second session with Ms. Andrea. I'm impressed he is doing well with her, he definitely exceeded my expectations with her. She has suggested we go back to adding more ST. If you remember we had to cut time because of school and his old SLP only working 2 days a week - she only had one slot for him. She is going to up his time slowly since he has so much going on with therapy and school. Starting next week we are going up to an hour, then as he proves he can handle it we will keep adding. She is hopeful to get at least 2 hours a week, but really looking at 3-4 hours.
He will still have ST in school as well. I always say the more the better - heck if Zach never had all that he has I know he would not be where he is now!

I really want to thank someone - someone I've never met --- for giving me some information, and leading us to looking more into Zachary's situation. Her name is Elise, I don't know her in person only from the computer BUT I know enough to tell you what an AMAZING person she is! She shared with me her daughter's story and I shared with her Zach's story. Elise has been reading my blog and as she does similarities pop into her head. She brought up Autonomic Dysfunction (or dysautonomia: http://en.wikipedia.org/wiki/Dysautonomia) I had never heard of this before Elise came into my world - she shared this website with me: http://pediatrics.med.nyu.edu/dysautonomia/autonomic-disorders As I read it there were very many similarities almost uncanny to Zach's issues. I went to the pediatrician and had a little chat with her today about this. She agrees that Zachary has many Autonomic symptoms and has decided because of his regression and some other issues really coming into focus that we are going to look more into this as maybe being an official diagnosis. She is contacting our neurologist and the geneticist and we will see them as soon as we can get in.
THANK YOU Elise --- I think you helped to find something we've been searching for -- a possible diagnosis, this is huge! THANK YOU I can not say it enough!!!!!

Not 15 minutes after having this conversation with the pediatrician today....I step in my door and the phone rings....it was Zachary's school nurse who says "Zach fell really hard out of a chair onto the back of his head - he stood up and sat down like nothing happened. He didn't cry until his SLP asked if his head hurt." "Sophie, I don't think he feels any of the pain - and it was clear that it was a very painful fall" ----- She doesn't even know what I'm talking over with the docs. She asked where he hit his head and he points to the front (when nothing hit the front of his head) She said he seems okay - no blood, no bump. She is keeping an eye on him as he won't let her leave him because he has a death grip on her neck. Zach is not crying and he is not talking - he is in a nonverbal state right now. I'm so thankful for his school and the nurse - they are all amazing. OH and so you all know not feeling pain is just one of the symptoms of an Autonomic Disorder - This has been something we've noticed for a very loooong time with Zach but chalked it off to "oh it is just his SPD kicking in again"

I'd just be really happy if life could STOP -- just for a day -- I want a normal kid, just for a little while.
I'm going to stop to breathe for a little while.....I need to stay positive and the positive for this situation is having a new friend come into my life, to give me that push, to bring another idea to the doctors that can't figure out my son. The positive is we may be onto something!