LTM

This week has been a good one for Jamey. He's had a lot of energy (this can be a double-edged sword because it can be really difficult to keep up with him . . . ). It's been nice to see him want to play with his friends again. When he doesn't feel well he retreats into himself and doesn't want to see anyone. When he is feeling well he wants to play with his friends and be a normal boy. Yesterday he came home from school very excited because he had finally joined in during PE class. I think this is one of the first times this year he has had the energy to do this! How great is that?!! I just hope long term maintenance stays this way, although I have my doubt during the weeks he is taking steroids. My guess is that he will be really down during the week he's taking the steroids and fine the rest of the month.

I'm always surprised and incredibly touched when I run into someone who reads this blog. Yesterday at a training I ran into a friend who told me that she reads it all the time. It really touched me (and David when I told him). Thank you so much for caring. It means a lot to us to know that we have people who support us.