sloooow recovery

Hi Gab,
Just wanted to let you know it is slow going for my 12 yr old daughter, too. Her dx was cloudy initially and the docs thought she was getting better and so, long story short, she never got ivig treatment.

Her onset was Feb 07. She was using walker for short distances and mostly in wheelchair for first 5.5 months. She is on crutches now and we continue with PT. Looking back, she has made HUGE progress but it gets so discouraging sometimes. I never thought she would still be unable to walk w/out assistive device after 7 months. She’s holding up well but I know she gets tired of it all too.

While her endurance has increased tremendously (back to school full-time on crutches), PT often wears her out. She overdid labor day wkend (swimming, playing, tooling around on the crutches) and then was totally exhausted for 3 days. I made her stay home and rest, I thought she was getting a virus or something, but I think it was too much activity, plus the heat was really hard on her too.

This is such a hard thing. She is moving towards walking independently again but her legs just don’t work right, it takes so much effort! Also, PT now thinks that her breathing muscles were impacted and that is part of the problem. She was never on the vent or anything, so no one really looked much at her breathing after the inital hospital/monitoring stage. But we are finding it is very difficult for her to breathe properly while exerting herself. She has to concentrate very hard to move certain muscles in her legs, and exert a lot of effort, and while she is focusing on that, her breathing slows down. Maybe that is an issue for you too?

Anyway, I just wanted to say hang in there and keep looking at the big picture, not the daily one! People here understand the frustrations of a slow recovery, which is a blessing.