Sunday, August 2, 2009

Doctoring and all :P

So A-man is on the list for the Marcus Institute....There are 170 families ahead of us. (Really? Wow....) So it will probably be about a year before he is seen there. We'll have to work out school, babysitters, etc when the time comes..I'm working on crossing bridges when we get to them instead of worrying myself into a tizzy....I'll let u know when that happens LOL! July 16Th we got some bad news about Adam. The bones in his cranial/cervical junction are all compressed with the very top bone looking malformed. He will go see the neurosurgeon in August to see exactly how to handle this as it may mean that part of his brain is growing into the hole in that very top bone, which can make his spinal cord and brain fight for room. Best case scenario is that he will have physical therapy and his neck will be stable enough to do so, physical therapy will increase his range of motion so he can do simple things like turn his head from side to side without using his shoulders and he will be able to button his own pants and tie his own shoes :) Best case scenario for an unstable neck is that our angel will have a halo....for 8-12 weeks and depending on what severity of traction they have to use he'll either be in the hospital for 1 week and at home for the remainder or at the hospital for the entire time....Mid case scenario is that he'll have to have a rod and fusion surgery to stabilize his neck and that will mean a couple weeks in the hospital and recovery for idk how long at home....worst case scenario is basically brain surgery, rod and fusion surgery and halo....which means long periods in the hospital and a long recovery at home....Praying for the best....Preparing for the worst. That is the only way to survive this type of thing I think. Or it works for us...whichever. Right now he can't do anything where he might twist his PE and recess are out at school. We had a meeting on Friday to draw up his 504 plan. I'm beginning to not like the principal more than I didn't like her last year. She kind of wanted us to withdraw him without even being able to get services at home until all this is over with....Sorry but only being not able to do 2 things out of the entire day doesn't constitute us withdrawing him. They'll have to do what they do for other health impaired children and find something for him to do instead. I'm starting to have a deep need for Adam to have normalcy as much as possible in his little life. Every tid bit of "normal" we have is special...School is his "thing" he LOVES it and I will fight how ever long I have to to keep him there. He needs it, it makes him happy.... And my job as a parent is to fight for my children. So I'll go to meetings, I'll send what i need to send, I'll sign what i need doesn't matter. One thing they have got to realize is that I am not weak. I won't stop fighting for him until there's nothing left to fight for (everyone does what they need to for him) or I decide that its enough. Anyway we're getting ready for church right now so I'll stop blogging for now.... Keep us in your prayers, Lord knows we need them! Thank you to all who send a positive thought and prayers our way...we feel them and draw strength from them on days when we have none left.... LOVE!