my days are still taken one at a time. days are long. time is short. sleep is thankfully less elusive than it used to be. and i have some good news ...
one of calvin's new drugs, xcopri, is helping him sleep better. it has also helped him to go sixty days without any seizures on the heels of a forty-eight-day seizure-free stint. xcopri has also allowed us to completely wean calvin off of the homemade thca cannabis oil i have been making and giving him for nearly ten years! i'm so grateful i was able to provide it for him for so long because it seemed to help his seizure control, but what a relief not to have to source the cannabis flower, buy it, get a liquor license to purchase and ship the 190-proof organic alcohol i use for extraction, make the oil, measure it and administer it!
calvin is on track to have just a fraction of the forty-two grand mal seizures he had last year. If he continues to be seizure-free on his current xcopri dose of 200 mgs, he will end the year with only seven grand mals and one focal seizure! That may be the fewest seizures he's had since first being diagnosed when he was two years old.
as calvin enjoys better sleep and longer stretches between seizures, he seems to be happier. he smiles more when we hug and kiss him. he seems slightly more compliant when we take him places. at school, they are having him wear a compression vest, which they say calms him. i'm grateful for every bit of this and so pleased i can share it with you!
besides all this good calvin-related news, my personal joy has been coming from near-daily running, taking photos, baking, and a bit of gardening. i would like to post to my blog and work on my memoir more, but i am trying not to "should" myself. i am simply hoping to find joy and some sense of freedom from calvin-related worries.
so, forgive me if you don't hear from me much these days. i'll try to keep checking in, and i'll try to write something that is more than simply an occassional news update.
be well, friends. xoxo