Thank you all so much. I feel much better about looking for a chair today...now, where to begin on that! I'm thinking Craigslist? I know I could get her a prescription for one, but it would probably end up costing me more due to awful insurance.

I love the anonymous letter. I have read that before, but it really helps to read it again. I'm printing it out this time. Sadly, I have had family members read this type thing before, but they still refuse to get it. My daughter is VERY strong, she rarely cries with pain and is even laughing at times. She puts on a good front for the family/friends for a couple of hours and when she gets home it's always hell for the next 2-3 days. It's hard to see your child miserable, but it's ALMOST just as hard to see family so oblivious to her condition. They say, at least it's not cancer....well, cancer can be cured, people have heard of it, there's more "hope". (please know I don't take cancer lightly, my best friend died of cancer less than a year ago...that still hurts!)

As for the PPRC. My daughter actually did go to Seattle Children's, but at that time she wasn't as severe. She did "get better" for a while, but it has recently become so much worse and has spread. Right now we are taking her to a program in Dallas. it's not as well known as the others, but it's close to home and we're going to at least check it out. Our next step would be Cleveland.

Again, thank you all so much. I know you all know how validating it is to talk to people that "get it". If you have any advice regarding purchasing a wheelchair I would love to hear it!