10.01.2018

changes

The kid we have now is the kid we will likely have in years to come. With few exceptions, Calvin is the child he was five, ten, twelve years ago. He still wears diapers, still can't talk, still whines and coos, still spins in his jumper, still crawls on the ground, bangs shutters, bites rugs and stares at the sun.

He still takes medicine and endures scores of seizures every year.

This weekend, however, marked another personal best: Calvin walked with me and Nellie nearly a mile—down and back from Lauren's house—with a brief break to sit and drink some fresh, unfiltered apple juice with Lauren. Calvin has walked to Lauren's only twice before, though he has never walked back. Having said that, Calvin still pulled his usual antics of trying to drop down every few yards once we got about halfway to her house. I'm ashamed to say that my friend Stephanie, having seen me struggle outside her house came out and helped me with Nellie, had to witness me cursing my exasperating situation. Thankfully, like a rental horse returning to its stall, Calvin exhibited little stubbornness on the walk back home.

Sunday was a repeat performance; Michael and I took Calvin and Nellie to Portland where we strolled several cobbled blocks with a compliant child. It was the first time we've visited Portland without having brought Calvin's stroller along.

In pondering these recent milestones, it seems that with each passing month since his last dose of benzodiazepine Calvin's stamina improves. Perhaps, too, taking less Keppra, by virtue of his weight gain, probably helps him too. Additionally, the reduction of his THCA cannabis oil seems to be helping him have less agitated afternoons. Moreover, the addition of Palmetto Harmony CBD oil, unlike other CBD oils he has tried, appears to be reducing his seizures overall; since starting it in late June, Calvin's monthly grand mals have gone from six to eight down to four or less. If Calvin continues on this positive trajectory, he'll have fewer seizures this year than in any year since 2014 when he was taking way more medication!

So, though the kid in the video below, which was taken just before his eighth birthday (he is now fourteen), is heartbreakingly much the same as the one we know and love today, I am deeply grateful he is doing better in terms of behaviors, stamina, understanding, sleep and seizures. And though my kid isn't riding bikes, competing in sports, writing essays, planning for college—on the contrary can barely push a doorbell—I embrace and consider his tiny milestones as significant and positive changes.

              

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