Update

I'm not really doing that much better at blogging, am I? Anyway, Seth had his first visit at the MDA clinic this week. He saw the same doctor there (Dr. Chadehumbe), so it's basically to get established with the MDA so you are eligible for services. (Although they stopped one of the bigger ones-money for durable medical equipment-starting this year...kind of diappointing.) Dr. C said he's doing fine, so that's good. Basically we just have to see her every six months at this point and hope there's no big changes in that time.

We did talk about the Ataluren (the medication for his type of mutation), and right now it's hopefully going to be FDA approved at the beginning of NEXT year, which is longer than we thought (this summer), so that's also a little disappointing. I feel like we're in a race against time, and it makes me really anxious when I think about it. So I try not to. :) She said that she's really disappointed in the company, because somehow you CAN buy it right now, but it's $280 a pill! So I guess only rich people get to help their sons?

At the end of his appointment, the lady that kind of heads up things at the Grand Rapids MDA (she might be the director?) came in and talked about camp. Like this: "SO WE CAME IN TO TALK ABOUT CAMP!!!!" And she was telling Seth all the fun stuff they do and the whole time I'm thinking, "he's not going to camp...." And either she was sensing that or she has experience in this department, but she said, "yeah, it's harder for the moms to let the kids go than it is for the kids to go!" And I wanted to tell her it's not THAT (although it would be hard, but if I thought it would be good for him, I'd let him go)....it's that he's not all that aware of what DMD means yet, and I don't think that's a bad thing. He doesn't need to know that he may not be able to walk in 5 years, and I think being around the boys that can't would make him start to make the connection. Not happening. She can think I'm too attached if she wants. :)

So that's about it on the DMD front. Things are pretty much the same and sometimes I can even put it out of my mind completely. It always comes back, of course, and some days are worse than others, but somehow we're getting through. What else can you do, right? I don't know how many times I tell myself that it isn't in my hands and worrying myself sick won't change anything. Maybe someday I'll believe it.