boston bound

Yesterday we took our quarterly trip to Boston to see Calvin’s neurology team. We said goodbye to Rudy the dog and pulled out of our driveway at seven. I sat next to Calvin and fed him breakfast in the car, sustaining only bruises to my psyche from various pings and biffs from his uncontrollable flailing fists. I had already reached my boiling point before we even merged onto the highway heading south.

The remainder of the trip, after breakfast, was uneventful and I even found myself taking seconds-long cat-naps, waking when I heard Calvin quiet, just to make sure he wasn’t having a seizure or to stop him from poking his eyes.

We arrived at the hospital early and the first order of business was to change a poopy diaper, followed by sticking (literally) an awkward plastic urine collection bag on Calvin to analyze anything we’d be able to catch in it. Immediately after that came the dreaded blood draw, but like most of our visits to this facility, the phlebotomist, a young woman who we had never met before, could have struck Calvin’s vein blindfolded, she was so skilled at her craft. As a result of her beautiful finesse of the needle, his blood flowed through the clear thin tubing like Gatorade sucked into a straw by a thirsty linebacker.

Our last stop was just down the corridor to see Calvin’s doc. She and her dietitian greeted us with their usual strong, warm hugs. Calvin laughed hysterically in Michael’s arms—just like when he hugged his Grandpa last week, who then remarked “this isn’t right." We gave her an update on his seizure frequency and his uber-manic behavior. She quickly answered the list of questions I had emailed to her previously and we talked, as usual, about drugs. It seems an idea I’ve had for several years—of using anticonvulsant drugs prophylactically—is possible. We haven’t tried the strategy before because Calvin’s seizures, until of late, have been difficult to predict, but now, whether it be a blessing or a curse, when it comes to foreseeing a seizure, I am nearly batting a thousand.

During the entire car ride home Calvin’s hysteria transformed from laughter into wicked fingering, screaming and incessantly fixing his hands over his ears. That behavior, combined with the fact that his walking and balance were practically flawless all day long, lead me to believe that a seizure was imminent.

So, last night at dinnertime we temporarily increased one of his seizure medicines, the one related to Valium, for just the next three nights to see if we can dodge the brain-bullet we are expecting to hit.

This morning Calvin awoke without having had a seizure, but sadly the few smiles he had for us just weren't quite the same, and his giggles were no where to be found.

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