Friday, January 12, 2007


Last evening I was making dinner, with interruptions. After behaving like an errant piece of popcorn hopping all over the living room, banging into stuff and coming this close to hurting herself, S was asked, no told, to jump in place while I counted to a hundred. She resisted mightily, for a long time, not believing that she had any excess energy to burn. Finally I walked over to her, got down in her little face and said, "You may jump or sit on a chair for four minutes. Right now."

So she jumped. I counted. I'd not even reached ten when she said,"You're right, mama. This jumping is fun." Not the point, but okay. She had to do it twice more before we got to bedtime. The last time, she said, panting, "Count faster, mama, my thighs are hurting." Funny then, that all that jumping neither acted as a deterrent to further hopping and whirling nor did it make her as tired as it one would think it should have.

Today in therapy Q got to try out a "kid cart." It's a little alarming to the uninitiated (me). He sits up like a big kid in a structured, softly upholstered seat with straps to keep him from sliding around, a headrest to keep him positioned properly. They'll be modifying the seat with a little foam in the back and sides to make it just his size, so his legs fit at the proper angles at the proper joints and he can sit up without flopping over. He has a clear tray to put stuff on. There are two wheeled bases made with heavy duty steel tubing, painted blue. One base for use in the house, adjustable in height and reclining rather like an industrial high-chair, one smaller, collapsible, for use out and about as a stroller. The thought of hauling him around in what looks like a teeny wheel chair on stilts is a bit daunting, but hey, that's not the point now, is it.

While the PTs were sitting him up in it, he started feeling around, noticing the shiny metal tubes near him where the tray attaches, and going after them. It was neat to see him working to interact with a new thing in his environment. I wonder how he'll be with this over the long term. We'll probably bring it home next Tuesday after speech therapy--it's being adjusted and resewn for Q before then. It'll give me time to talk to the kids about this new piece of equipment and what it means before we have to get used to another new thing. Won't it be a hoot to get him in this next to the table when the big kids are doing schoolwork? He already shows signs of wanting to keep up with his sibs, getting all excited when they're talking to him.

This afternoon he fell asleep in the backpack for the second time this week while I was cleaning up and doing school with the bigger kids. It's so funny to take him out of the pack and lay him down. Often, when he's being laid down for a nap and he's mostly asleep, and grateful to be so, he'll burrow into the sheet a little, grinning in his sleep, then heave a sigh and go limp, his open little mouth bracketed by pillowy cheeks. The very picture of utter relaxation.

Yesterday we ventured out on icy streets for Q's vision therapy appointment. I almost didn't go because the roads have been atrocious. It took more than an hour to get there--it's usually about a 25 minute trip.

So about that. Let's take a moment to address some basic safety issues, shall we? If you're driving down a long, curvy, very steep hill, on compact snow and ice, do not tailgate. Doing so earns you a special place in hell, in no small part because if you can't keep yourself from tailgating in very bad conditions when you could just pass in the other lane, you are guaranteed to possess a host of other self-control issues as well. (On the flip side, if someone is tailgating you, don't become overwrought and take leave of your senses. Assume that someone's bleeding out in their backseat or is, perhaps, in the midst of an aneurism. Or labor. See how you already feel more compassionate, less retaliatory?)

Also? If you already can't control your vehicle, smoking or talking on your cell phone while driving will not help you. In fact, you may experience greater success in safely reaching your destination if you put your hands at ten and two and have someone solder them in place. Absent that, at least resist the urge to fiddle with your radio. Do not attempt to apply make-up while navigating any road. Maintain a decent speed so you don't slide off the ramp/hill. Physics still apply. Even if you have four-wheel drive. Just because you can go doesn't mean you can stop. Shift down to slow down when approaching an intersection--it will help you to not slide right through it. Steer (calmly, slightly) into the skid. Always travel with emergency provisions, even if you're just going a short distance. And last but not least? If a road is closed, bear in mind that the sign does not have fine print reading: This ROAD is CLOSED to everyone. Except you. Because yes, you do have special powers. Please proceed with abandon.

Rant over. Back to vision therapy.

Q was one of two patients who made it in that whole morning, so we had plenty of time with a very attentive doc. Turns out that in fact his vision had progressed from 20/400 at the first visit, to 20/310 over the summer, to 20/80 back in early November. Woohoo!!! This would explain some of the steadily increasing interaction, no? Yesterday, Q measured at about 20/128, because (we hypothesized) he hasn't been quite himself for the last few days. As I believe I've mentioned, a virus, even a very mild one, seems to drop his cognitive function pretty significantly for a few days, then he sort of resurfaces or comes back out of the cave. It's odd compared to any other reaction to illness I've seen in kids. It's as if he's there, but not there. Sort of like what we surmised were "background" seizures he was having before the Trileptal. He's more "awake" or present and much more consistently so since he started the meds.

Otherwise the nice vision therapy doc was impressed. Q got a good fix and focus at closer range than he has in the past, veered away and returned to his target (my face) repeatedly and showed greater attention and response than he has before. We noticed during the exam that he has a tough time getting his right eye to cross the midline (looking across the bridge of his nose), so we're going to try glasses. Little blue wire-rim ones. They're the smallest size made in this brand and still, they'll have to have the earpieces shortened. Blue looks good on the boy, and dare I say they're cute? Well they are. He'll wear them for therapy purposes, rather than for the usual corrective issues. We're going to have a piece of translucent tape over the left lateral (outside) half in order to push Q to bring that right eye over. This particular lens seemed also to sort of even out his tone, make him sit at attention, as it were. They'll be in about three weeks from now. I don't know how long he'll wear them or how useful they'll be. All that will play out. Shoot, maybe the boy will end up having a leap forward after he's over this bug as he sometimes does after an illness and he'll just skip needing them at all. That'd be just super, wouldn't it?

I do wonder about some things in regards to his trouble with just sniffles and even light colds. First, I wonder if he's having some sort of neurological inflammatory response to the bug, since he seems more likely to have loss of proprioceptive function (ability to tell where one is in space or in relation to objects) or even to have seizures if he's not feeling well. Would he be better off if I were giving him ibuprofen around the clock to address this? Or could it be the mucous which seems to be almost entirely postnasal in nature? He spits up more when he's sick, which I'm sure is an issue of drainage into his then upset tummy, but it could also be related to a dip in cognitive function and therefore sphincter muscle management (I'm guessing here as other tone drops with illness). And what about the fact that he has some swallowing difficulties, some snot drainage issues, and sometimes has trouble managing extra saliva and/or his tongue? Is it possible that in kids with microcephaly they are experiencing some "flatness" or lack of dimension in their ears/nose/throat because their brain isn't properly helping to expand those internal landmarks by growing and pushing the skull out further as would happen in a child experiencing neurotypical development? I wonder about these things. I don't know if anyone else wonders or has any answers, and I'm certainly in no position to analyze existing data, much less collect my own, but there seem to be enough of these issues overlapping in kids with PMG that it makes me very curious indeed.

He's asleep now and so are all the other ducklings, so I'm off too. To sleep, perchance to dream.

Be nice on the road, eh? Thanks. No, really. And blessings to you as you make your way in this crazy world. Go have some dreams yourself.

1 comment:

Anonymous said...

Wow, Wow, Wow! Carrie...I know you know this but a jump from 20/400 to 20/80 is phenomenal! My son's acuity is different depending on time of day, level of boredom, sickness, mood, and the person doing the tests! I am so glad to hear of the improvement.

Old Dominion Heather