back from Rochester- no change again

December 3, 2008

Hi everyone. Well I am not sure where to start. We are back from our latest

cast change. had his last cast on for just over 3 months. We had been

stuck at 16 degrees for the past 3 cast, now make it four. The xrays (supine)

looked so good to me. I was sure we were close to 10 degrees. I could barely

contain myself, then the doctor pulled up the xray on his computer and started

measuring it with a new program (as opposed to with protractor, ruler and

pencil as he usually does.) Guess the number that came up...16. He said by

tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19.

Our doctor knows our frustration and can't explain why we are not getting more

of a change. In the past he has said, " I think we can fix this, especially

because it is clear has no other underlying syndromes... " Well this time

it was almost as if he was trying to help explain the lack of progress he threw

out there maybe we should

see a geneticist. I may be in denial, but I feel that is unnecessary. I do

not want my baby to be poked or prodded any more than needed.

His back to the naked eye is beautiful. When asked to bend over it looks so

straight!

We are going to try another cast until March (when turns 3). We may even

do one more after that and then go for a brace for the summer. What do you all

think of this? I have cried until I am out of tears due to frustration and

exhaustion. I know is healthy and happy and that the casts have made a

difference in his life. The doctor almost sounded as if he is giving up on

curing .

What do you all think of all of this? Thank you for all the support.

Jill and

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