back at home and on the road

Last week at school, Calvin came in close contact to three individuals infected with Covid-19. A close contact is considered direct physical contact or a total of fifteen minutes in any 24-hour period within six feet of someone who has tested positive for Covid-19. The day after Calvin tested negative following his first close contact, which was the Monday before last, we learned of the two additional exposures last Thursday and Friday.

Today, I made the decision to keep Calvin home from school until after the holiday break. The decision was not an easy one; Calvin will miss out on riding the bus and spending time with his teacher, aides, therapists and classmates. Instead, he will be mostly cooped up at home playing with his baby toys, spinning in his swing, taking baths and car rides, and walking aimlessly around the house and yard with me, as long as there's no snow on the ground. No doubt it will be an inconvenience for me, too, in that I'll have far less time to myself for things like writing and taking showers, and I'll have to deal with Calvin—his needs and behaviors—around the clock again, after having done so for more than a year at the start of this damn pandemic. Thankfully, Michael helps out when he can, and does all of the cooking, which is amazingly tasty. And, I feel fortunate to be in the position to take that decision, in that I no longer have a job or career to worry about.

The decision was mainly taken to prevent the risk of any additional close contacts at school. Keeping Calvin free from additional close contacts will allow him to get his booster shot sooner than later, since boosters can't be given until two weeks after a close contact. What with Covid cases surging, and in light of the recent emergence of the more contagious Omicron variant, I want Calvin to have maximum immunity around the time he goes back to school on January third. A booster before Christmas will do that.

So, for the next two-and-a-half weeks, life for us is going to look pretty much like it did last winter: back at home and on the road for long car rides, taking in the scenery, waving at friends and strangers, and listening to music. We survived more than an entire year that way, so I'm sure we can manage to do it again without too much trouble.

In other news, we have slowly increased Calvin's new antiepileptic drug, Xcopri, from 6.25 mgs to 18.75 mgs per day (I'm splitting pills into halves and quarters) without seeing any noticeable side effects. Most adults take doses between 100 to 400 mgs a day. My goal is to increase Calvin's dose only when he has a breakthrough seizure. The titration schedule suggests increasing the dose every two weeks regardless. That makes no sense to me. In my mind, less is always better if it can work. My hope is that he doesn't have to take more than 25 to 50 mgs when all is said and done. I want to avoid taking him to extreme doses in an all-out effort to achieve seizure freedom. I want him to have a decent quality of life above all else, which might mean trading a few seizures to avoid heinous side effects, if you know what I mean.

So far, Calvin has gone eleven days without any seizures, and has had only one seizure—a grand mal—in the month of December. Knock on wood. Cross your fingers. See you on the roads.