same old same old

I cant believe how fast this week has flown. Having only 4 days of therapy makes it feel shorter to. We had an ok weekend. Marvs family brought pizza out and we played ball in our now spacious yard. Its so nice to be able to hit the ball and not have to worry about it going on the road or rolling down the hill. The boys definetly love it. Sunday night we went to my parents for a cookout and we didnt last long. C was hot and itchy despite my very best efforts at keeping him comfy and cool. I went home kinda frustrated because we left at the very best schmore making time. In due time we will be able to fully enjoy times like that again.

Therapy is goin much better for C this week. We have a rewards system in place when he does well with each tech. He has 4 techs a day so if he gets 4 stickers then he receives a small prize at the end of the day. At the end of the week, if he has gotten all his prizes he gets to pick a bigger prize. The coordinators have an allotted amount of dollars they can spend on day rehab patients for motivation and since theres only 4 patients and 1 is a baby the kids have bigger better things to choose from. It helps to that each ones box is custom made for their interests. C's of course has race cars, lightning mcqueen, and toy story things.

We should be receiving C's Jobst suit on monday of next week. I am kinda excited to how C will fair with it. He has new gloves coming too that only encase half his hand and thumbs. He will like those much better. The main PT tech is worried about C's wrists. He has a graft on each one and the right one is already pulling his thumb down towards his arm. All of last weekend C had a cast on his right wrist to keep his wrist pushed back like he's giving hi-5 and to keep his thumb extended. It worked ok and he'll have another one this weekend. He has a cast on each wrist right now but they are little flimsier and are being held on with ace bandages. She works strictly with burn patients and we have full confidence in her and what she does. C may also be getting his feeding tube out tomorrow! Horray!!! That will be another huge relief once that gross thing is gone. I need to revamp some of C's meds as well. A few I'm almost out of and dont have refills and others we need to see about getting a lower dosage. C only sees Doc once a week, so I have to make the best use of his time while I have him!

Besides feeling like I have full time job driving to and from Akron everyday, life here is going on as best we can. It totally beats being at the hospital and staying at the Ronald Mcdonald house. Theres truth to the saying 'home sweet home'! I was reflecting again today how far C has come and us as a family. I just felt this overwhelming peace wash over me again and while we have been on a roller coaster, there has been an underlying truth that we hold onto. No matter whats going on Christ has been there and he knows before we do and he equips us to handle circumstances that are out of our control. Yes there were days we felt totally and completely helpless and still do and thought that theres no way we would ever get to the next day, but we have felt your prayers. Thank you so much for praying! Your continued prayers would be so appreciated! Were not sure how long we will be doing therapy but its gonna be a while yet. C is doing well with it but still has some balance issues and doesnt run yet although some times he'd like to. With time he will overcome this but until then we will strive to become better. Until next time.......
Amy