Sunday, February 22, 2009

The things people say

Yesterday we were out with the girls and Hannah was doing such a great job with her walker, despite not having napped and being pretty tired. The last of our errands was at this kids' store near us and the girls were having so much fun playing with all of the toys, checking everything out, etc.

As Hannah was making her way around the store, this girl who was probably around 5 saw Hannah and called out to her mom, "Look at that poor girl, Mommy."

I was already tired from all the running around we had done and kind of under the weather. I felt my eyes well up and I just looked at the girl and said, "She's NOT a poor girl." Then I saw the girl's mom looking at me and I added, "She's actually really strong and smart and brave.
Right, Hannah?"

The mom smiled and said something affirmative like, "That's right, she is," sort of both to me and her daughter.

And that was the end of the interaction.

It wasn't that big of a deal but it totally tore me up. I felt really bad for being short with the girl and know that she's just a kid and doesn't know not to say things like that. But at the same time, I wonder how she got the message that pity was the right reaction to someone with a disability? I have to believe it came from her parents, and although I appreciated the mom's smile/nice words, I kind of wanted to say, "Sure, you agree with me now but maybe you should be
the one to nip those comments in the bud and explain to your kid why it's not okay.

Argh, I was just so upset and know it had to do with lots of different things going on with me as well, but it killed me that Hannah might hear someone refer to her as "that poor girl," when she would never think of herself as that way otherwise.

Some days are just hard.

Friday, February 20, 2009

Mix it up

I work at a college with incredible athletic facilities, and lately the girls and I have been taking advantage of them by going to the fieldhouse and using the indoor track. It's often empty or nearly so on weekday mornings, so we bring Hannah's walker and we've also brought the girls' tricycles there, as well as some balls and other toys and we use it as a place to let them get their ya-yas out as well as get some good walking practice for Hannah.

Here are some pics and videos of the girls jumping on the mats, playing soccer with Daddy and running around the track.

Is it enough?

I'm having another one of those phases of wondering if what we do for Hannah is enough. It's probably brought on by the pressure of maximizing the botax window, making sure we don't waste this precious time and do everything we can to strengthen and stretch and build new skills. It might be compounded by the winter blahs-we're stuck inside so often and it's really hard to find creative ways to keep Hannah physically active.

I'm hooked up with a great listserv for parents of kids with CP and the many and varied treatments people are exploring to help their children is really impressive. I know that in our day-to-day activities with Hannah, we are already doing so much in terms of how we handle and position her, encourage her to move in certain ways, foster skills and incorporate stretching and strengthening. But is it enough? We're pretty busy, always running from one activity to the next, most of which involves therapies for Hannah (PT, OT, swimming, hippotherapy). But there's not much time outside of those limited activities to incorporate some of the many other things I feel like we should be doing for her. I have this great book, a resource I turn to often: Teaching Motor Skills to Children with Cerebral Palsy. I love it and yet, it makes me crazy because the pages and pages of stretches and activities you can do to foster different skill building are limitless, and my time is very much limited. I read it and get great ideas as well as a huge pang of guilt that we just won't get around to incorporating very many of those ideas on a regular basis.

There are places where we could take Hannah, intensive "camps" for kids with cerebral palsy where they focus exclusively on these very activites, for hours and weeks at a time. Living in a rural state, nothing like that exists close by. To take advantage of it, we'd have to relocate temporarily and pay and arm and a leg for the tuition. I'm wondering though if it's something to consider, if not right now than maybe next summer? I don't think I want Hannah to spend all of her time working on her motor skills because I also want her to be able to be a kid, and to spend time with her sister and the rest of her family. But for a short time, maybe it would get her past some hurdles and push her into a new developmental area.

On the other hand, maybe she just needs more time. Thinking back to this time last year, Hannah has made great strides. The progress of kids with CP is slow. There are peaks and valleys. Maybe, just doing what we're doing, keeping Hannah engaged in some different therapies, being mindful of maximizing her potential through stretches/strengthening/etc, and also just living an active life, she will develop and progress at just the right rate she is supposed to. But what if she could do much, much more if only we took it to the next level?

For now we've decided to do some preliminary looking around at other intensive options, maybe for this summer, as well as be sure we stay on top of our regular routine. Hopefully for now, that's enough.

Tuesday, February 10, 2009

quotables and post-botax

Hannah, at dinner yesterday, staring at her napkin, says, "I'm just watching the news so I know what's going on in the world."

Isabelle, while talking to my parents on Skye (the webcam), says, "Grammie, there are a lot of bones in our hands and they're what hold our fingers together and help them to move."


So Hannah had botax on Friday. She did great. She had 6 injections total, without sedation. She cried hard during the procedure but once it was over (it took under 5 minutes) she was fine. I, on the other hand, could have used some mild sedation. I was pretty emotional and stressed.

Now we're 4 days post-botax and there are some small differences that we're seeing. We noticed that over the weekend, she was pretty cranky and tired which may have been a side effect of either the botax itself or the overall change in her tone and her reaction to that. We gave her some Motrin for about a day and she seems to be getting back to herself now. We went to the mall on Sunday and brought her walker, but she wasn't up for walking that much and was also doing quite a bit of in-toeing and dragging of her left foot which was a little disheartening. That's one of the things I had hoped would be improved after botax. But from what I've been reading and hearing from people, in the short term it can be more difficult for kids to move around post-botax because they've learned how to use their tone for mobility and suddenly it's gone or much better. So hopefully once she adjusts to things that will improve.

When we stretch her, Hannah's range of motion seems better and she's definitely easier to stretch. She also seems to be having a little bit of a better time pulling up to stand and for the first time the other day, she tried to get her right foot under her first instead of just using her arm strength to pull up. She is also doing a pretty good job of walking up the stairs while holding onto one of our hands and one of the railings. And the amount of time Hannah can tolerate sitting cross-legged or with legs out straight seems longer.

So there are a lot of little things but not one major breakthrough, which is I think the way it goes with botax. I hope that we can take full advantage of this window to help her along in some of the areas we've been working on. I'll report back on this as we go along.