Updates on Laurel: October 2002

I just thought maybe it was time for a Laurel update...

We also see her smiling a lot more these days (well, except the last week and a half or so, but I'll get to that), and I can't tell you how much the combination of seeing her happier and seeing her respond so much more has done for MY mood! I think the last time I was really depressed was the last time I posted that I was depressed, and that's been at least a couple of months now.

The Wilbarger brushing that we've been doing HAS helped some with her panic attacks and her startling. Sometimes she'll still start to panic when she's on her back, but she'll catch herself. And we are still having problems with her startling when she's sleepy, but the other day I sneezed a couple of times with her on my lap and she barely blinked, where in the past that would have made her hysterical!

She is still struggling a lot with gross motor skills, although her lower back strength has improved a bit more. But she *still* can't quite sit up and she is still having a hard time using her arms, especially her right one. Her gross motor problems are why we're going to try the Feldenkrais, as I've heard good reports on it from several other parents of kids with CP - including one who had a daughter in about the same place as Laurel in the spring, who did a few sessions of Feldenkrais over the summer and is now sitting and army crawling. I think we may end up trying hippotherapy as well, but one thing at a time! Her ankles are still incredibly tight too, which is probably the biggest thing we'll discuss with the orthopedist. She *wants* to walk, though - the other day Bob was holding her up under her arms with her feet on the floor, and he pushed her forward a little and she started stepping, all the way across the rug! She looked so pleased when she was done, too. She can't always make her legs do what she wants, either - the other day I had her on her tummy, and she wanted to roll to her back but couldn't get her leg to come over after she got on her side. After several attempts she grabbed the hem of her shorts and pulled it over! Anyway, we know there's a will there, so hopefully we will find a way!

And also, the way she moves food around in her mouth has improved a LOT - it mostly actually ends up in her stomach instead of down her chin now. But we are still struggling mightily with interest and also, when she *is* interested she often gets very excited and then she stiffens and arches backwards and we can't feed her! We are trying to locate a feeder chair which will hold her in a better position (I know of some places we could buy one, but they're EXPENSIVE so we are trying to find one we can borrow).

So in the grand scheme, things are mostly going well! But short-term, we are all losing our minds because Laurel has been working on cutting about 6 teeth for the last week and a half. With all the teeth she still has to get in (only the 4 middle teeth are completely in, and most of the bottom 2 molars), I guess we knew this was coming - but UGH, she has been a bear lately! Laurel tends to get a lot of gas when she's teething, too, so that makes it worse. And to top it off, I think she is having the "bowel changes" that the OT warned us about with the brushing - suddenly her usual dose of Miralax is too much, and we're having a hard time finding the right amount. But once we work through this short-term stuff, I think life will be pretty good. :-)

News from our trips to NACD and the orthopedist...

We had quite a discussion with Mr. Doman over both getting Laurel off seizure meds and about her getting AFOs (ankle-foot orthotics, to help keep her hamstrings stretched so she can bend at the ankles) and a stander (which we were told by her PT that she should have so that her hips could develop and to keep her bone density up). Laurel hasn't had a seizure in 8 months but her neurologist was very discouraging of the idea of taking her off her medication until she'd been seizure-free for 2 years. On the other hand, seizure meds have also been known to slow development, and many kids who have had infantile spasms have been able to come off them sooner with no problems. This has caused rather a debate in our house. :-( Mr. Doman suggested a doctor who could give us a good second opinion on her EEG (we'd have to get one, it's been a long time) in terms of whether there is anything there that would contraindicate taking her off the meds. About the AFOs and stander, he told us we shouldn't get the stander because it could negatively affect her hip development to stand before she crawls. He also discouraged the use of AFOs because keeping her feet encased in plastic for long periods of time will not help with her hypersensitivity in them (I can certainly see his point there). He didn't think her ankles were that tight, but he's the *only* one who's ever said that. They seem pretty tight to me.

We have been transferred to Ellen's caseload for the future. We were told this is good news, that he only keeps the cases that he sees as being problematic. It's nice to know he doesn't class Laurel that way. :-)

So, this morning we went to see the orthopedist. It was a pretty positive appointment. Although she tends to sit with her back curved, she doesn't have scoliosis and the doctor seemed optimistic that her trunk strength would improve and she wouldn't develop it. And so far, her hips look good. The only problem he saw was, yes, those tight ankles. And he prescribed AFOs. He didn't think she should necessarily be doing a stander yet - that she is not ready to stand otherwise (given her lack of trunk strength and all) and that sitting is a more appropriate thing for her to be working on at this time. He wasn't concerned with bone density yet - he said hypertonic (high muscle tone) kids don't tend to have that problem as much as hypotonic (low muscle tone) kids. But he thought the AFOs would be helpful in keeping her hamstrings stretched and avoiding surgery. So we went ahead and had her cast for them. I think we will probably keep Bob Doman's caution in mind, though, and give her feet plenty of chances to be out of them too. We'll be picking them up in 4 weeks.

I wrote a while ago that Laurel would be having an evaluation for Feldenkrais therapy last week too. That didn't happen because the therapist decided at the last minute that she needed a doctor's prescription, but our ped sounded pretty cooperative when I talked to her so hopefully that will go forward this Wednesday.

That's the big news from here...also, Laurel fussed her way through the NACD appointment and a few hours later we found out why when she started blasting yellow gunk out of her nose. So she's been having a bit of a cold. (Just as well we didn't manage to make it work out to meet Michelle [michellejeanne], I'm sure she didn't need Laurel's bug! We ended up coming home a little early anyway). She also keeps biting her tongue and she has a nasty sore going! :-( I've been holding off on the high frequency eating thing until she feels a little better.

They had a kids' Halloween thingie downtown today, so we dressed Laurel up as a duck and walked around with her some. They had trick-or-treating and we got her a lollipop - we'll see if she likes to lick it after her tongue feels better (she has this nasty viral ulcer on the tip of it right now). Tomorrow we're going to get our pumpkin, and maybe some apples from the local orchard.

In case you're wondering "Why a duck?", that's our most usual nickname for her.

Been meaning to post this for a few days. Laurel had her Feldenkrais evaluation on Friday. It went pretty well - Laurel seemed interested in it and the therapist thought she could help Laurel with moving her arms better and with trunk stability/sitting. Basically what she did was get Laurel to move in ways she doesn't normally, not yanking her through the motions but somehow guiding her to do it herself. We are going to try it once a week for a month and see how it goes. I'll let you all know what we think at the end of the month!

Laurel likes to play kissing games. When I kiss her, she kisses me back. If I kiss her again, she kisses me again. She can go on and on like that. It's like she's trying to get the last word in, LOL! Laurel doesn't have a clue about closing her mouth or puckering, though, so it's a pretty sloppy game! :-)

On the less-sweet side, sometimes Laurel screams for the sake of screaming. A couple of times, I've gotten frustrated and started screaming along with her and it's stopped her really quickly! I'd love to know what's going through her head then! :-D