May 12, 2011
Same as it ever was
Well, that's not entirely true. Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)
These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.
Anyway, the neurologist believes that what we've observed in the past sound very much like seizures, so we'll continue to watch for them and continue to wait and worry and all that. We know a little more about what's happening inside her brain, but not much, and life goes on very much like it did before, with an amazing and puzzling little girl who inspires awe and love and fear and insecurity and who reminds us, in the words of Ian Brown, that some things in the world of a broken child are real problems, and some things are mere complaints. Some of you have expressed how hard this all must be for Julie and I, and we appreciate that. But we live every day with Schuyler, and our lives are enriched immeasurably by her presence. So perhaps we feel sort of bad for the rest of you who are Schuylerless.
Incidentally, we got a bill today from the neuro, asking us to pay a part that wasn't covered by insurance or the deductible we paid, a whopping sixteen dollars. I think we can scrape that together. As a result, however, we saw how much WAS covered by insurance. Almost seven grand, folks. That a lot of coin just to see Nighttime Brain Pops. Why, that's enough to buy Schuyler her practice marimba for band next year, four times.
That's a lot of marimbas, friends.