This week Calvin has slept like a baby—at least one who sleeps well. For a five-day stretch I haven't had to get up in the middle of the night to check on him. I'm pretty sure that's a record. In fact, he's slept so soundly that in the morning when I wake up and hear a silent stream over the baby monitor I've feared that he's expired in the night. He's attending to his toys better, too, spending up to twenty minutes playing with them on the floor of our bedroom without getting up to race off to somewhere else. He's a bit calmer, enough to turn the pages of a board book, a big smile creeping over his face.
On the down side, he isn't as interested in eating since we increased his cannabis oil from five to seven drops twice daily, about 0.15 mls each dose. His balance is not as good, either, but his mood has evened out some. After school I'm taking him to get his blood drawn to check clobazam and Keppra levels, his two anticonvulsant medications, both of which he is on very high doses and both of which I loathe. Tracking the results as we slowly increase the cannabis oil might give me some idea as to whether the cannabis is interacting with his other drugs causing their side effects to increase. My gut tells me that it is, and I intend to decrease his clobazam regardless, if we see an improvement in his seizure control—perhaps even if we don't.
Today the temperature is supposed to sneak above freezing for the first time in what feels like weeks. I've said before it has been a long, harsh winter, with dozens of days, including this morning, opening below zero. Outside the birds are chirping and with luck most of the snow and ice will melt away this week. I desperately need to get back to gardening and walk with Calvin outside. But for now I've still got some waiting to do, which is something that, since Calvin's birth, I've had to become accustomed to doing.
So, wait I will, watching icicles melt drip by drip and snow banks dissolve into muddy streams. I'll watch, blade by blade, the grass turn from brown to green and the mercury rise by degrees. I'll watch silver hairs sprout one by one atop my head and notice new freckles dotting my skin. I'll be counting the days since last Sunday's seizure hoping for a longer stint than before. And tomorrow night I'll be turning the clocks forward, wishing I could do the same with March, with spring, with Calvin's wean.
On the down side, he isn't as interested in eating since we increased his cannabis oil from five to seven drops twice daily, about 0.15 mls each dose. His balance is not as good, either, but his mood has evened out some. After school I'm taking him to get his blood drawn to check clobazam and Keppra levels, his two anticonvulsant medications, both of which he is on very high doses and both of which I loathe. Tracking the results as we slowly increase the cannabis oil might give me some idea as to whether the cannabis is interacting with his other drugs causing their side effects to increase. My gut tells me that it is, and I intend to decrease his clobazam regardless, if we see an improvement in his seizure control—perhaps even if we don't.
Today the temperature is supposed to sneak above freezing for the first time in what feels like weeks. I've said before it has been a long, harsh winter, with dozens of days, including this morning, opening below zero. Outside the birds are chirping and with luck most of the snow and ice will melt away this week. I desperately need to get back to gardening and walk with Calvin outside. But for now I've still got some waiting to do, which is something that, since Calvin's birth, I've had to become accustomed to doing.
So, wait I will, watching icicles melt drip by drip and snow banks dissolve into muddy streams. I'll watch, blade by blade, the grass turn from brown to green and the mercury rise by degrees. I'll watch silver hairs sprout one by one atop my head and notice new freckles dotting my skin. I'll be counting the days since last Sunday's seizure hoping for a longer stint than before. And tomorrow night I'll be turning the clocks forward, wishing I could do the same with March, with spring, with Calvin's wean.
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| photo by Michael Kolster |
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