Hey Glen, hang in there as best as you can. Have you thought about giving Mitchell idebenone? Just a thought. What about trying deflazacort? I recall your prednisone horror. I'm just saying, try another avenue, that's all. Mark gained 8 pounds in 9 months on prednisone. We took him off prednisone and switched him to deflazacort. He hasn't gained a pound since. So, maybe Mitchell will respond better to ( or even a low dose of) deflazacort. What about trying weekend dosing with him? Again, looking at other options for you.
Mark's strength has maintained for the most part but once in a while he has a bad day and I think and wonder to myself is he spiraling down a notch? It's hard at this point for me to think about making commitments for Mark for the next year or for the year after that. I wish I had a crystal ball to look into to help me make the best decisions for him.
I suppose soon we need to think about getting Mark a scooter. He doesn't need one at the moment...just don't want needing one badly to creep up on me. Also, I can't come to grips right now with the thought of him needing such a device. Funny, I can still slip into denial so easily. Maybe it has something to do with the fact that he is doing so well or maybe it's my faith that someone is going to pull our boys through this madness. Maybe Mark will end up with just a mild case of polio -so to speak for the rest of his life and go on and live somewhat of a mainstream life.
Okay, I'm ranting so i'll leave you with all of that deep crap. :) Take care and keep in touch. Hope Mitchell's Halloween is a howling one!