A Very Seizure-Free Christmas

All the leftovers are gone, and it’s officially time to start thinking about the big C (<-- not that one y’all. I’m talking Christmas here.)

Snowflakes and jingle bells may be like the cold weather equivalent of sunshine and butterflies for you guys, but they run my stream of consciousness right into the potholes and ditches of memory lane. Buckle up, Thelma, ‘cause we’re going there.

My three kids have had 18 surgeries between them, mostly before age 6. That goes a scalpel or two beyond the norm, but there you have it. Tissue, teeth, eyes, bone, brain, and a rebellious appendix in the dead of the night. {Insert moody music here.}

And insurance battles aside, it was an organizational nightmare when they were little, scheduling these anesthesia outings around school and birthdays and holidays. So their hospital “vacations” happened mostly over December break.

So much so, in fact, that when my daughter Lucca was 7, she asked me one autumn day “Am I going to have any surgeries over Christmas this year?” I thought about it a minute, just to be sure, and said “No sweetie, I don’t think so.” To which she replied “Yay!” The Cleavers, we’re not.

And although 2005 was unusually surgery-free, it turned out to be a particularly despicable year for us. Newly and friendlessly transplanted from North Carolina to Maine, the autism diagnosis was handed down (PDD-NOS, with a side order of ADHD), Romi was funneled up into the state’s early intervention system, referred from the warm and fuzzy local daycare to a specialized program in Portland, and then he went and caught a case of The Epilepsy.

See- sometimes autism languishes away in the grey matter’s folds and synapses, so it lures epilepsy into spinning the brain’s disco ball every now and then. And so it was that one night, like any other, three-year old Roman spiked a high fever, but it would. Not. Come. Down. Grape-flavored Motrin and bubblegum Tylenol be damned!

I worriedly held him for hours, rocking him back and forth, waiting for Jeff to come home from an out-of-town trip. Romi was form-fitted to me like a sweaty blanket when Jeff came in, saw my expression, and angled around to kiss Roman on the forehead. He noticed his vacant look, and within a few minutes, he had gathered Roman up from me and taken him to the hospital.

From then on, and despite any number or dosage of antiepileptic meds, Romi began having more and more absence seizures, firing in clusters, spiced up with the (occasionally vomitorious) partial complex seizure.**

Our pediatric neurologist prescribed a pre-surgical workup, and we dutifully wore the pavement down between Maine and Massachusetts, putting Romi through all manner of PET scans, functional MRIs, standing EEGs, walking EEGs, SPECTs, and even continuous 24-hour video monitoring for a full week. Every test confirming that Roman’s seizure focus was located in a little rebellious, gnarly mass in his right temporal lobe. *shakes fist!*

And so it was on December 5th, 2007 that then 5-year old Roman, signature curls completely shaved off, was wheeled into a room at Boston Children’s Hospital for a spot of neurosurgery. Lasting for(F’in!)ever five hours.

And he emerged looking like a prizefighter - eyes swollen shut and lumpy-headed, with a giant sutured question mark stretching from just inside the hairline above his right eyebrow around to the back of his head and circling down to his ear - the whole thing wound up in a mile of bandages.

When the anesthesia wore off, I’d like to tell you that Roman asked for Jeff and I, but he didn’t. He needed his stuffed salve, Bear-Bear, and some cheddar popcorn. Stat! Then Romi began to heal.

Days, weeks, months, ticked away with no seizures. Meds were discontinued after two successful years, and this Thursday will officially mark SIX YEARS since we kicked epilepsy’s ass to Romi’s brain curb. Go Roman! (And maybe knock wood for us? Just in case.)

Kelley

** True story: one time I was filling up the car when Roman started seizing in the back seat. We were a couple of miles from home and I was so distracted that I drove off with the pump still in the car. And the gas station didn’t even blow up like in the movies. Whattttt? I knew that was fake!


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