Tuesday, September 22, 2009

Q news

It's been awhile since I've laid out what's up with Q, so let's dig in, shall we?

While I was teaching art, Q's SLP tried a little something different with him for their session. She mixed together a 4 oz container of stage 2 pears and about half a box of his Boost supplement. The consistency was a little more solid than a melted milkshake. He drank it right down, no fuss, a minimum of muss. So I'm pretty much mixing everything to that consistency these days. I think he's caught on though, and seems to now suspect that the rest of us are having food better than his. Wah. As much as I would love to have one thing for him that could be just solved, once and for all, he is a growing boy and I would get bored with that. Eventually, I am sure. Still no swallow study scheduled.

Our beloved OT is back just part time and so we're still with The New Guy. He wouldn't mind being called that, because he has a deadpan sense of humor. Q was mildly taken aback at that, but has since caught on and obliged delightfully, speeding up his response times and pushing himself a little -- obviously choosing which activity and then pushing buttons repeatedly so he could get what he wanted. The New Guy has an interest in AAC and catches passing opportunities to learn more about how to apply adaptive thought to kids' needs.

Our beloved PT (once A New Guy) is seeing Q twice weekly now. We're looking at rearranging the schedule a bit, so mommy can keep those last shreds of sanity (snort), but we'll keep two hours per week of PT. Our PT is in charge of equipment for Q (coordinating needs with the other therapists). When I brought up the stander issue last week (it's extended out as far as it will go, height-wise), we ended up discussing each of the other items Q's using or will be likely to need soon. I learned then that we're hoping the walker will take the place of the stander, at least eventually. A few weeks ago I finally got the leg splints Q has needed, and he's using them successfully, pretty much daily, to keep his knees at 180 degrees (straight) while he's in the walker. He needs to have constant attendance with this, because he slumps when he gets interested in other things and isn't relying on high (increasing) tone for upright support. Other equipment: next week we'll pick up a loaner potty chair, or rather, we will if Q fits it. This is stunning, no? He's dry most mornings, so we're going to give it a shot. So to speak. Later this fall Q will need a new set of AFOs and is new ones will have toe straps, to help him with pronating big toes. Something that we may eventually be looking at is at home e-stim (electronic stimulation). A small, alternating electric current is applied via sticky electrodes to particular muscle groups to help a kid recognize those muscles. These kinds of units have been touted in infomercials as the latest in exercise, providing a passive method for increasing muscle mass. It doesn't work that way. (I know you're shocked at this.) It's more like a tickle, a strong tickle, that calls attention to itself, helping the client/patient to have increased awareness of that particular area. Q has used this in PT a couple of times so far and was quite a bit more upright as he was standing, playing with his favorite ball. It's exciting to see, and seems promising, but I'm not anxious to add another piece of equipment to our lives unless it's clearly needed. Space and time are both pretty scarce just now.

Q goes back in October to discuss Life Without Trileptal and perhaps even the timing of an oral Baclofen trial. I attended a CME on Intrathecal Baclofen about seven weeks ago. It was fascinating. Really. Sometime we could discuss GABA receptors and Baclofen delivery methods, liver toxicity, lumbar test dosing and proper placement of the eventual pump. Really, really cool information.

But for right now, the boy went down and all appropriate machines (dishwasher, washer, dryer) are running, we have earlier than usual therapies in the morning (hoping this time slot could become a regular thing) and so I am (shhhh...) going to bed. He didn't go down until 1:30 this morning and was then up a few times in the night, so sleep is seeming like the loveliest thing in the world.

Rest well, more later. XO

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