Thursday, March 27, 2008

Q's news

Q has been a busy boy. Sleep hasn't been so spectacularly awful in a week or so. Life has reflected that nicely. (Thank God.)

He's now using his head for buttons (switches) at therapy, his hands at home. His skills with the Boss Car (aka: Q's Jeep -- which he perks right up at the mention or sight of), are improving, including being able to push the button with his head and not jump out of his skin when it motates him quickly forward. He's more consistently and vocally making choices between two activities or objects. He sits more, more readily, less floppily, more consistently. He actually holds himself well enough now to not flop out of his car seat, Bingo chair or therapy seat while I'm buckling him in. This is a very big deal and has taken a really long time. Okay, it could probably have taken a lot longer than it has, but it was so gradual that I didn't notice it until he'd been quite good at it for about a week. That said, he doesn't do any of this by himself nor well enough to turn one's back for even a second. Still, progress is progress.

He's gotten better and better at the use of all buttons, which should lead directly to his very own Big Box of Words (a phrase lifted shamelessly from Rob who wrote an actual book about his daughter's PMG and their family -- which is selling, how cool is that?). Q's might very well be only a small box of words, and it might not happen for quite a while, because there are a million other things to overcome first. For example: he'll need to get those fingers out more and do so more predictably. This is tough because his motor planning delays are biting his little behind every time we turn around. He gets all excited when he's at the computer in therapy, looking for the durned cow, pig or horse, depending on which is his favorite for the day, but can only vocalize, not hit the button when the actual animal of choice is still in range for the picking. After a few seconds, the chance to hit that animal is gone and the next one comes up. Usually by then, all the neurons have aligned and are firing like mad, ready to go. So he gets the pig when he wanted the cow, or the horse when he wanted the pig. Thankfully, he's a very good-natured little guy and he just sighs and grins and gets ready for the next time around, while enjoying the E-I-E-I-O part. Or he'll be looking for a button with his fingers when it's right by is head and he's just used it many times successfully.

This week in speech, he played and joked with all of us (therapist, student, me). He had a plastic slinky which was new to him this week, with which he'd become quite fascinated. To the right of his head was the "all done" button, to the left "slinky." When he hits a button, he hears the words (recorded) and gets the action he's specified. This week, he went back and forth between the buttons in an apparent frenzy, too excited at the prospect of the slinky to get only the button he actually wanted, hitting both instead. It was clear he wasn't done because he just would have eaten the slinky to show it how much he loved it, if only it hadn't already been so incredibly cool looped on his arms, waving about. So after moving quickly between buttons the first time, he caught on that we thought he was funny, so he went back and did it some more, laughing, looking to see if we were noticing that he knew this game, now. When he finally slowed down enough to pause between the buttons, the student quickly disappeared the slinky beneath the tray so he had to ask for it again, making the "all done" button have some meaning, thank you very much. He appeared confused for a second as he realized the game was changing, then bonked the slinky button and became engrossed in it again.

We had the EI and vision ladies here this week. It's clear that his vision is coming along nicely (pardon the pun) -- he's exhibiting less and less signs of CVI (hooray!), more and more congruent use of both eyes (double hooray!!). Though, when tired or ill, that left one just wanders off to play in the periphery without asking permission and often doesn't come back when asked. It sounds as though the vision therapy lady might be able to come once a month for brainstorming purposes. She's an old hand at this business of getting kids to progress as far as they are able and will continue to be an invaluable resource for as long as the state lets us have her. This week we talked about how to include Q more regularly in all aspects of his life. We've already had him "coloring" at the table with us when we're doing school (his face looks nice in those slashes of orange and green washable pipsqueak marker), using (attempting to eat) play dough, pulling his favorite toys from table to floor so his sisters have to get them up for him again, or simply fiddling excitedly with the tablecloth (at these moments I believe him to be delightly planning insurrection). When we're all eating, I try to make sure he is too, though that can be tough because someone has to be feeding him, it's usually some degree of an unholy mess, and not all of what he eats is compatible with the moment. i.e.: Feeding him his supplement by syringe in his car seat while the rest of us enjoy a quick stop at Taco Bell? Not happening.

Speaking of vision, he's just in the last couple of weeks become completely fascinated by his shadow. He waves to it. Tries to grab it. Wants to nail that sucker down. I remember the older kids being fascinated with their shadows around 2 1/2 - 3. Funny, no? Also, we had about four inches of snow yesterday, most of it coming down while it was still light out. Q alternately stood up or sat or launched himself at the window for about an hour, watching the snow fall. Though changing positions, he managed to hold himself erect, chin up, and stay focused for nearly an hour. This was incredibly hard work for him, and it thoroughly wore him out, but he sustained it. I'm still hopping about with glee over this. His only pauses were momentary head turns to look at whomever was holding him up as if to ask, "You people knew about this and didn't tell me?" or "Holy cow! Did you know about this stuff?" or "You're still watching, right? I'm not making this stuff up, right?" and then he went right back to it.

Speaking of speaking, he's started calling "Gaaaa-aaah" when I call G. I don't know if this one will be sticking around or not, since most of his vocalizing/verbalizing is intermittent at best, at worst, transitory and unavailable to him when he clearly wants it. He's saying "geh" or " 'gain" for again, and this one has been pretty available to him for about three weeks now, in use most frequently when one of us is playing with him and he wants a quick repeat of some fantastic thing we've just done. "Hi" and "eye" are still in there, but not as frequently used (even wehn he relaly wants them) as they have been at other times. His turnover in reaction to questions posed has shrunk quite a bit over the last year -- going from one to three minutes down to immediate to several seconds. This is hopeful for his switch use, though perhaps not exactly applicable. He can cough on cue about 60% of the time -- a very big deal since the same motor planning things are in play there as in speech. Just thinking about this now, it's a flat out miracle that he manages to clear any "minor" aspiration in a matter of a couple of hours, six at the most, since he has to cough to do it. But perhaps that's the sympathetic nervous system and not reliant on him consciously connecting the dots in order to accomplish something.

His favorite (manual) toys are currently rattles which a.) resemble a phone and b.) resemble a curiously radioactive crab. Both are bright (red and wildly multi-colored, respectively) and just the right shape for him to hold tightly and wave about as though he's conducting a symphony. I'm guessing he'll be a telecommuting scuba diver. Or a cell-phone-using marine biologist. Or a shamelessly enthusiastic fan of talking on the phone to anyone, at anytime, and he'll own goldfish. He already has the phone-use thing down. What can I say? It makes him happy.

Now for the goldfish.


Bird said...

Hi! Just thinking about you the other day when I realized we were out of Ambertose. Thanks for your thoughts about CVI. I think Charlie has CVI caused by hemianopsia. Basically, he has sight loss, which makes vision confusing and hard to process. Call it Mommy's intuition, but it's the best explanation I can come up with and the doctors seem to agree. He got some classic CVI symptoms and I've only just recently convinced his Vision Therapist. She comes once a month. We're also about to start having an "instructor" who has extensive experience working with the visually impaired. I'm pretty confindent that with a lot of work he'll improve. In fact, he's already improved since he was first born. Maybe I'm in denial too, but I can live with that.

Anonymous said...

The coughing game truly is one funny thing to watch. Love that boy.

Odewkven, btw.

No, I don't think it's German, actually.


Anonymous said...

So very cool! The vision improvement is great! My son's eyes wander and jerk when he is tired. It is slowly getting better. Interestingly, I am beginning to see it more when he is stressed.

Q. is making such huge, wonderful strides! I am so impressed with the miracle of Q.

OD Heather