Rundown
It's snowing, its dark, there's a fire, and all the independent appliances are running, which seems like the perfect time to catch up.
The girls are busy as can be: E is a commuting geophysics major who secretly loves her hardest math and physics classes, even though she's there for the rocks; K made the dean's list in her first quarter in dual enrollment while working part time and playing as much music as she can; S is teaching four music students while rehearsing with two orchestras and studying, mostly for test preps. G is working and adulting, so we hear. And Q is, well, he's three months post-op from baclofen pump surgery, and trundling along. His scars look great. His para this year has him working with multiplication facts (he seems to know the answers - woo!), and he's having adventures with new school equipment (Rifton Tram), trekking like he means it, and practicing with door switches and innovative grips/handles.
This is a weird time of life, peeps. In the sixteenth year of homeschooling, I'm almost done directing educational pursuits. My role these days is more about chauffeuring, lifting, and tracking. S is ready to get her license, so I'll be down to just Q, mostly, with his five or six hours of therapies a week and rides to school (because we're not doing the bus at 6am, thanks). Well, and then hauling folks to the train station. The lifting requires training-for these days: 70lb chair will soon be 90lbs when the new setup arrives, and the boy himself is north of 82lbs. The tracking bit is mostly calendar wrangling, but also trying to stay on top of the congruence of All the Things - medical, physical, research news, anticipating emotional needs...
During Q's OT session today, I was reading Neuroscience News and frankly grooving on the report that the Salk Institute has identified 11 discrete groups of V2a neurons. This means that, beyond the two groups they had been able to see, differentiating limb movement based on location within the spinal column, by using single-cell RNA sequencing they're more able to nail down the difference in molecular profile, and thereby the difference in roles. This will eventually be enormous for stem cell therapies, especially for spinal cord injuries, but perhaps also for congenital diagnoses. The thing I'm finding compelling about this info is that Q's baclofen pump has revealed just how much he's relied on tone vs. motor planning to accomplish tasks. He's having to work over the lack of tone to manage reaching, grasping, stepping, and even some posture/positioning. Right now, his left-leaning upper thoracic scoliosis is kind of winning, a little bit. We've got work to do there, and will see a couple of ortho people March 13 to get that ball rolling (fingers crossed, eyes heavenward - at least the worst of all ortho surgeries has already been had). But the news about the V2a neurons helps the Qpuzzle to feel less... persistently opaque.
The things I know we can do for Q now include assertive nighttime positioning, countering that curve and stretching his hamstrings. Both of those are going reasonably well, with the caveat that he's pretty bugged by any phlegm at all in his throat, so not puking is prioritized over optimal skeletal/soft tissue supports. But that's just a little better than it was last week. Additionally, he needs more systemic feedback (proprioceptive and vestibular). He needs to be wiggled and jostled and bumped around. A lot. When he was smaller this was easier in that he fit nicely into a modified REI backpack which I wore while teaching the big kids, and he was easier to hoist into and out of a variety of other setups, including his WIKE. But the WIKE is tougher and tougher to get him into and out of. Between his own body formation and the low height of the WIKE seat, I can't take him out without the help of at least one burly child/sherpa, just because I can't get him into or out of it. I hear that there are nifty racing chairs out there, but I haven't gone down that particular rabbit hole.
There's more, of course. I think I'll have to come back to talk about the other equipment issues and how to keep Q out there, defying gravity. As it were.
Meanwhile, here's to a good, long sleep, and hugs to give. Mwah.
xo
The girls are busy as can be: E is a commuting geophysics major who secretly loves her hardest math and physics classes, even though she's there for the rocks; K made the dean's list in her first quarter in dual enrollment while working part time and playing as much music as she can; S is teaching four music students while rehearsing with two orchestras and studying, mostly for test preps. G is working and adulting, so we hear. And Q is, well, he's three months post-op from baclofen pump surgery, and trundling along. His scars look great. His para this year has him working with multiplication facts (he seems to know the answers - woo!), and he's having adventures with new school equipment (Rifton Tram), trekking like he means it, and practicing with door switches and innovative grips/handles.
This is a weird time of life, peeps. In the sixteenth year of homeschooling, I'm almost done directing educational pursuits. My role these days is more about chauffeuring, lifting, and tracking. S is ready to get her license, so I'll be down to just Q, mostly, with his five or six hours of therapies a week and rides to school (because we're not doing the bus at 6am, thanks). Well, and then hauling folks to the train station. The lifting requires training-for these days: 70lb chair will soon be 90lbs when the new setup arrives, and the boy himself is north of 82lbs. The tracking bit is mostly calendar wrangling, but also trying to stay on top of the congruence of All the Things - medical, physical, research news, anticipating emotional needs...
During Q's OT session today, I was reading Neuroscience News and frankly grooving on the report that the Salk Institute has identified 11 discrete groups of V2a neurons. This means that, beyond the two groups they had been able to see, differentiating limb movement based on location within the spinal column, by using single-cell RNA sequencing they're more able to nail down the difference in molecular profile, and thereby the difference in roles. This will eventually be enormous for stem cell therapies, especially for spinal cord injuries, but perhaps also for congenital diagnoses. The thing I'm finding compelling about this info is that Q's baclofen pump has revealed just how much he's relied on tone vs. motor planning to accomplish tasks. He's having to work over the lack of tone to manage reaching, grasping, stepping, and even some posture/positioning. Right now, his left-leaning upper thoracic scoliosis is kind of winning, a little bit. We've got work to do there, and will see a couple of ortho people March 13 to get that ball rolling (fingers crossed, eyes heavenward - at least the worst of all ortho surgeries has already been had). But the news about the V2a neurons helps the Qpuzzle to feel less... persistently opaque.
The things I know we can do for Q now include assertive nighttime positioning, countering that curve and stretching his hamstrings. Both of those are going reasonably well, with the caveat that he's pretty bugged by any phlegm at all in his throat, so not puking is prioritized over optimal skeletal/soft tissue supports. But that's just a little better than it was last week. Additionally, he needs more systemic feedback (proprioceptive and vestibular). He needs to be wiggled and jostled and bumped around. A lot. When he was smaller this was easier in that he fit nicely into a modified REI backpack which I wore while teaching the big kids, and he was easier to hoist into and out of a variety of other setups, including his WIKE. But the WIKE is tougher and tougher to get him into and out of. Between his own body formation and the low height of the WIKE seat, I can't take him out without the help of at least one burly child/sherpa, just because I can't get him into or out of it. I hear that there are nifty racing chairs out there, but I haven't gone down that particular rabbit hole.
There's more, of course. I think I'll have to come back to talk about the other equipment issues and how to keep Q out there, defying gravity. As it were.
Meanwhile, here's to a good, long sleep, and hugs to give. Mwah.
xo
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