Ayla 2-9-10

Ayla's physio yesterday didn't really go any better than last week. Even with Ezra there. She still screamed and cried the whole time...1 whole hour.
They are fitting her with some splints for stretching at night for her arms, wrists, and fingers and are going to find some for her legs. They are trying to find some there that fit her so we don't have to purchase some (they only make them in the states) or wait for the ones to be made there. If they make them there it will be even less fun for her to go through the fitting and molding and refitting and adjusting. They found some that fit her they just have to modify them a bit.
The PT and OT people decribed it like this, her layer of fascia (the "shiney" part of the chicken skin, after you peel off the outer) is stuck to her regular skin (the part that peels off easily), where they should slide around eachother they are stuck and inhibiting movement in her joints b/c the skin won't stretch easily. They put some special tape over her knees hoping that it would cause the skin to pull and "wrinkle" thus causing the stretching she needs. She was hoping it would stay on for a couple days....but it came off mostly last night in the pool:) So we'll try something else next time.

I was feeling very sad last night. At swimming Ayla had a terrible time. She usually loves it. I think just a hard day for her. It's so frustrating that really....there's nothign we can do to help her...nothing we can do to make it better. Everytime we see someone (Pt, ot, doc, etc) they are giving more advice/suggestions and we just can't seem to contain it all and remember to do it and how and how often. "Don't let her do this, let her do this, make her do this, etc"
It's so overwhelming...and to think last August/september she was running around in the back yard with Ezra...now she can't even roll over! I try not to ever think about how she used to be b/c i don't know if she'll ever be there again. I know this is all God's plan...and i know someday i will look back and have an understanding, but for now....i just don't get it! I am accepting of it most days because i trust the Lord...but it's a struggle once in a while.
That said, she's our little chatter box now. Talking like crazy and she is having many more happy times than before. Most days are fine but excuse her when you come up to her and she says "no!" or gives you a scowl. That's just her personality even before she was sick. She's gaining her weight back, now we have to try and turn it into muscle:)
She is getting bored with our jumperoo and excersaucers now so we'll have to see if we can borrow different ones from friends.
Well we are off to take the kids sledding:)