Feel the love!

The other night Seth snuck into Anna's room (he does it from time to time). When we finally discovered them and made him go back to his own room, Anna said, very dramatically, "BUT! We love each other SO MUCH!!!" Isn't that sweet? Somebody they are both going to be very grossed out by that story. Which is why I had to blog it.

Oh and last week, Anna only had one pair of underwear left. It had monkeys on it. She didn't WANT to wear monkey underwear and she let me know it. I finally got them on her and she forgot about it till later when Seth saw them, and just to make her mad pointed and laughed, and she said, "I am wearing the SILLIEST underwear!" in a very upset voice. Ok, it's not as funny typed out, I wish I had it on video.

AFOs

These are what Seth has to wear at night-the goal being to keep his ankles in as neutral position as possible while he's sleeping, to help prevent shortening of the heel cords. He picked out the snazzy flag pattern. :) We just got them today, so we'll see how it goes. Seth is a bit....resistant to change sometimes. And I'm sure they'll be hot, he has to wear socks with them, but I think he is used to being hot when he sleeps since he likes to wrap a fleece blanket around his neck and then have his comforter up to his nose, even in the summer. When I check on him before I go to bed he's always all sweaty, but that's how he likes it, I guess!

He's been on the deflazacort for over a week now. So far the only difference we've noticed is that he seems a little more easily frustrated, but he's always been like that, so maybe we're just over analyzing him. I just hate looking at him and thinking this is as tall as he's going to be for awhile (since it stunts their growth). I don't care how tall he is, but it's going to be pretty clear that he's "different" pretty soon as all the other kids grow all around him.

Speaking of being different - he and I had a conversation the other night. I was saying that there would probably be some things he wouldn't be able to do in gym class this year because of his muscles and he said, "I wish I didn't have it." I can't remember how it got to this, but he said something about his MD being a secret, and I said he didn't HAVE to tell people, but it definitely isn't a secret-it's nothing he should be ashamed of because it's not his fault. He asked me whose fault it was, and I said nobody's, and he said, "Yeah...God just made me this way." :( I just told him that he just needed to remember that even when things are hard he just has to remember God is taking care of him. And he said, "I know that!"

Also-we managed to get our genetics and next neuro appointments nailed down - September 16. The blood work is *supposed* to be done by then.

The medication

So I've probably mentioned we've decided to put Seth on deflazacort-it's a steroid that is a derivative of prednisone. You can't get it in the U.S. so I had to order it from the U.K.-even so it's not too terribly expensive-about the price of a name brand drug copay with insurance. We chose it over prednisone because it has less side effects, most notably less weight gain, so you don't have to watch the diet like a hawk so much. He will still have to eat sensibly, which is hard because he's picky and mostly likes "kid" food like mac and cheese, spaghettios, chicken nuggets, etc., which have too much sodium in them, and you're supposed to watch the sodium intake, because too much can give them a moon face because they are retaining too much water.

The main benefit of the med is that it's supposed to keep them ambulatory longer, and even after that can help improve their lung and cardiac function, too, and can either put off or eliminate the need for spine surgery that many DMD boys need at some point. Which are of course good things. It's just hard putting him on something that also has so many side effects. Cataracts (although almost always not interfering with vision), osteoporosis, stunted growth...and some neurologists will do growth hormone therapy and think that it helps with strength and flexibility, and obviously feeling "normal," but some think that it doesn't help and can actually hurt, because it's better if the boys are small. I think our neuro is in the growth hormone camp, but we'll just wait and see I suppose. Seth's always been smaller than most other kids anyway, so I guess he's sort of used to it.

I think we'll probably start the deflazacort in the next week or two-I don't want to wait till our next neuro appointment because it will be close to school starting and I want him to have time to get used to it and for us to be able to monitor how it's going before that. Wish us luck.