Wednesday, January 27, 2010

Little Champ

We're one week into the new round of therapy and my son is doing well. He's walking more and talking more and showing more awareness of his left hand - all good signs.

It's also been an incredibly busy time. He's in therapy twice a day nearly every day. Some appointments are in the house and some are in the hospital. With all his work outs, it's like watching a little boxer train for a prize fight. I joke that he's the only one year old I know with a set of six pack abs.

The rest of us are busy too. My wife has been working non stop to make sure the little guy's appointments go off like clockwork. I've been helping as I can in the morning and the evenings. My daughter too has been a champ, making my son laugh and cheer by playing with him when he's wearing his cast.

All that said, it's still tough. There isn't a day that I don't wish I couldn't call in sick for the family collectively and go fishing. We all really need a day off.

I keep trying to think about the Spring and the Summer; warmer days when the sun doesn't go in at 5 p.m. I keep thinking about my son walking at the beach this summer with a pail and a shovel. I keep thinking of my daughter learning to swim or ride a bike. I suppose if we've got to do this, the winter is the time to get it done.

What I'm looking forward to most though is the early light and warmer temperatures in the morning to go for a run with my little guy. It will give me no end of pleasure to let him take a break while I train and run. Not long now. Spring is just around the corner.

Good night.


GingerB said...

I'm avidly checking your blog to see how this goes, it may be something we'll be doing in six months or so. And frankly it kinda wigs me out. I'm thinking positive thoughts for you and your family.

David Sexton said...

Hi Ginger,
When I first heard about the treatment, I rejected the thought of it. It seemed cruel.

But a lot of very kind people kept recommending it. Even so, I don't think that if I hadn't heard our neurologist - who is by far our best doctor (most experienced and humane) recommend it - I would not have proceeded.

Even so, we did a lot of research and discussed approaches with all our doctors and therapists before we began this summer. We went with NYU as the team there was fantastic and kind.

There are no metrics on cases for children as young as our son, so we've taken a very moderate approach. We opted for a removable cast and take it off at bath and meal times. We also go for the shorter duration of three to four weeks with the treatment.

We expected that he would fight the cast, but that did not occur. As soon as he saw he could use it as a bat, he started clobbering everything in sight. I think for him, it's not much different than it was for me as a kid when I needed surgery - uncomfortable, but otherwise, not especially worrisome. It's the adults that do the fretting.

I would never recommend something as new as this outright. I think it's best to learn as much as you can and talk to as many people as you can. I know there are folks who have not had our good experience.

And even for us, it's sometimes hard to tell how much it's actually helping his weak side. What I have noticed though is that there is a marked difference in his other development - walking, talking, interacting, he's even signing (started tonight).

If only there was real money for the studies that would tell us if we were doing the right thing, it would ease a lot of tough calls. Louise did a piece on the funding of disability research that shows how tough it is to get a study like this funded.

Anyway, long answer (can you tell I think about this much). I hope it helps answer some questions.

GingerB said...

My hemiplegic daughter is almost 18 months old. She does have some function in her affected side but has a long way to go. The first time I thought about this therapy I wigged right out, but now, after ten months of therapy and progress and observing the way Hannah learns I think we will try it. My therapists have said they think Hannah is a perfect candidate since the only thing that stops her from using her affected hand is the lack of a history of success of doing so and I think I want to try it as she approaches two. I live in a city with a Shriner's Hospital so I think that is where we will start. Lately I've been practicing this myself, and I stand her up with a sorting box toy in front of her, and place the shapes in their slots without pushing them in then I hold her good hand flat and tell her to use her affected hand, and she does. The movements are jerky and uncoordinated but she gets what to do and that it is new and praiseworthy and she is pleased with herself. I can't wait to hear about your results.