The cast is off!

It was just really bothering me that they were leaving the cast on, so I called and left a message for the PA.  She called me back that evening and explained why she did it, but said if I really wanted it off, we could come in and she'd take it off and see if he was tender anywhere.  She was nice enough to squeeze us in before his bone density test today, so we headed in and they took it off and he wasn't tender, so she said he could just do a boot for the next 2-3 weeks.  He can take it off for swimming/bathing/stretching/etc., so that's nice for sure.  Maybe he doesn't even need it, but I was willing to compromise.  :)  So it probably isn't fractured, but he did something to it, so I guess I'm fine with keeping it supported for a few weeks. 

3 more weeks...

Saw ortho today-they did another x-ray that still did not show a fracture, but "just to be safe," they want to leave the cast on for three more weeks.  Which is frustrating.  I didn't want to make a big deal out of it, because I'm sure they are doing what they think is best, but is it really best to leave him in a cast for three more weeks when his muscles aren't like other kids, especially if there's not really anything wrong?  I thought of questions after we left-at that point I had listened to the kids fight for the last 1 1/2 hours and my brain was fried (this is why I prefer for Anna not to come to these appointments...)  Like-the doctor said at his last visit that IF it were fractured they would be able to tell on the x-rays they were taking today.  The PA we saw today said the bones were all aligned properly and they still did not see a fracture (bony reaction or otherwise).  So...why do we still need the cast?  They are going to x-ray it again in three weeks, so what that tells me is that there is still a chance (albeit small) that it IS a fracture.  SO why did the doctor last week tell me we'd know for sure by today??  Maybe he didn't actually tell me that, but it was definitely implied. 

Anyway.  I should be grateful that he's still able to walk on it and is getting around fine.  I'm just a little nervous what his ankle will be like when the cast comes off.  He's compensating when he walks, so I'm afraid once it's off, he will have a bit of a hard time getting back to walking normally.  And by then, school will be back in session...I just have to take things one step at a time, I know that, but it just seems like a lot of extra grief when there's probably not even anything wrong.  And I WOULD rather be safe, but I am just sick of cast life!!!

Buddies

Here's a picture of Seth and Romeo...and Seth's cast, since he wouldn't let me take a picture of that just for that.  Seth loves the dog-he likes to lay on the floor and let Romeo sniff and lick him all over his face.  He just lays there and cracks up.  He also likes to make the dog (and also me) crazy by doing various things to get him wound up.  Then he gets TOO wound up and jumps on Seth or something...you'd think the kid would learn, but apparently it's JUST.TOO.FUN. 

Also-notice Romeo's ears?  That one is always going all wonky.  It will either stick straight up, or stick out like in the picture, or sometimes even lay across the top of his head sideways.  I want to pin it down or something so he's not all funny looking.

Therapy frustration

I have not always been thrilled with the rehabilitation program we use for Seth.  Or I should say, we are forced to use for Seth, because it's pretty much the only one in town that treats kids with DMD, and the only one in town that has an aqua therapy component.  First there was the whole head gash thing, then that therapist and another one left around the same time, so they had no dedicated peds therapists so he had a parade of about three different ones (one of which must not work with little boys at ALL, she seemed to be at a loss as to how to keep him on task and interested).  I really do like the one they have now, but they are still not sure if she's going to be staying on full time into the fall or not...so there's all of that. 

Friday, I got a call from Seth's aqua therapist.  She really is great, Seth loves her, she can keep him interested for the whole hour session, she really knows her stuff....yeah, so she's quitting.  She's going to a land based therapy office-I didn't ask if she would see peds there or not, but they don't do aqua, so...not that it matters, since apparently they don't have anybody to take her place at the pool yet. 

I understand people leave, but it seems like MORE people leave from this particular place.  I have heard it's because they don't treat their therapists that well-make them see too many patients, too much paperwork, I'm sure they can get paid better at private institutions...and they don't have any plan in place whatsoever if somebody DOES decide to leave, so it's a big scramble.  It all frustrates me greatly.  So for now I guess he'll just do land therapy...I am going to look into Mary Free Bed in Grand Rapids-maybe, hopefully, they do late afternoon appointments so I wouldn't have to take him out of school really early, because it's about a half hour away on a good weather, good traffic day.  We'll just have to see what happens, I suppose.

Cardio and a cast

Seth had his yearly check with the cardiologist (who, I don't know if I mentioned this last year, I LOVE.  He is awesome.  Good doctor, great bedside manner) and everything looked good-same as last year pretty much.  They do an EKG and then an echo and he listens to his heart.  It looked good enough that he said we could wait two years to come back!  So that's good news.  His blood pressure is a little high, but it always has run on the high side.  I think we'll just see what it looks like at his physical in a couple weeks and talk to his doctor about it then.

The cast...ugh.  He fell (well, some kid pushed him) at day care on Tuesday and his foot/ankle/heel was hurting.  It didn't sound too terrible, so I didn't go get him right away, but when I went to pick him up, he still hadn't walked on it (about four hours later) and wouldn't, so I took him to ER.  They did an x-ray, which looked normal, but he still wouldn't put any weight on it, so to be safe, the doctor put him in a splint and told us to follow up with ortho in a few days.  We went to see them on Friday...they looked at the x-ray and said it looked fine, but if there was a fracture in the growth plate, it wouldn't show up on the x-ray until it started to heal, at which point there would be a "bony reaction" that would be visible on an x-ray.  The doctor thought that it probably was NOT a fracture, but since he couldn't know for sure, he had to cast it, because if he didn't and it ended up being a fracture, it would not be good.  So the plan is, cast for 10 days, then x-ray, and then *hopefully* cast off and go on our merry way.  We didn't talk about what we would do it if DID turn out to be a fracture...I figure I will worry about that if we need to.  His next ortho appointment is next week Wednesday.

Overall, he's doing fine.  They gave him a little shoe so he can walk on the cast.  We also got him a walker...at first he wouldn't walk on it at all and he was worried, and I figured it couldn't hurt to keep him that much more stable.  I am not sure he needs it as much as he thinks he does, but he thinks it's neat.  He is definitely way more excited than we are about it, that's for sure.  He also thought it was cool to ride in a wheelchair yesterday at the Air Zoo-again, way more excited about it than we were.  Of course there is the worry that if he has to be in a longer term cast, he will have a hard time getting his range of motion back...a lot of boys end up their chairs because of this very thing-they have a fracture and that's it.  I don't think that will be the case, though-he is walking on it and everything.  We'll have to see what his physical therapist thinks once the cast is off.  It's especially frustrating because at his last PT appointment, she was so excited because he had actually gained range in his ankles and legs, which is a huge accomplishment.  We'll just have to see what happens, I guess.