I have not heard of that. I know the way my childs is set up is under a special needs trust. There is a board of people that basically decide what the money can be used for. If there is something I think she needs then I have to request it from them and either they approve it or not. I have set up w...

That is awesome. We might actually be able to go now. Kayla loves going to the camp but with her having surgery in May there was no way I could afford it this year but maybe now I can!

Kayla will be having surgery next week at St. Mary's with the Mayo doctors. Just wondering if anyone has any experience there or suggestions.

Thank you,
Angie

I am assuming they have ran blood test and or swabbed the sores to see what it actually is (bacterial, fungal etc...). Also have you seen a neurologist.

Tess- What a awesome and strong young lady you are. Thank you so much for doing this for all of us. My daughter is 14 with OBPI. Even though we are not there in person with you, we will be cheering you on.

Best of luck and please tell us how your experience went.

Angie

She had to make a unexpected trip out of town to deal with a sick family member. Just wanted to let you know in case it takes her awhile to get back to you, she is not ignoring your post.

Angie

Has he seen a speech therapist, that is where I would start. If he is in public school they should have one for the school district that could evaluate him.

Angie

I would suggest that you go and see a BPI specialist and actually I would get a few opinions. In two years the recommendation can change as well as the surgeries that the doctor or doing or not doing any more. My daughter did not have the gracillis moved, they were going to move it to her bicep but ...

Regarding the secondary surgeries (muscle transfer etc..) there usually is not really a time frame on those. Until you see the results from the primary surgery (nerve graft) I would try not to think about the other surgeries only time can tell. Just keep doing the ROM as often as you can, it is hard...

We will be at Mayo on Jan 27th for my daughter's first appointment there.