State of the Kid, 2021 Solstice edition

BITE ME, EPILEPSY

LGS/epilepsy still sucks! Things are not fun, but also not as bad as they could be — if E’s neurologist’s occasional HIPAA-nonymous asides about other patients are to be believed. Still, every time I get a return call from the Nurse In Charge he always sounds so sad for us. I find myself getting super upbeat in response. It’s a sickness. It’s not quite stiff upper lip, but it is something midwesterny. Cheery stoicism? As long as I am not crying on the phone to the neuro team, I am still an adult with functioning coping skills. I may be a functioning coping adult who cries during the five-minute drive to the grocery store, but at least there are no witnesses for that mess — apart from my fellow drivers, who probably think I’m just having a music/podcast experience.

KETO

We’re hitting a few roadbumps in the diet. We also haven’t seen any real seizure reduction, so unless that changes in the next few week, this may have been a mere high-fat detour on the extended road metaphor I’m working with here. To shift gears (YES), today I learned that our grocery store is no longer stocking any of the heavy whipping cream that doesn’t have an added secret sugar-carb. In case you’re interested, that would be POLYSORBATE 80. It must be the carb that makes cream last so darn long in the fridge.

CP

E is doing great with his stepping, walking, and pushing up.

SLEEP

Sleep is better!

INSURANCE/HEALTHCARE

There is usually never anything good to write about American health insurance. Due to shifty stuff, we’ve switched primary care providers for E and are feeling some weird Seinfeldian wrath from their referrals department (in that they seem to keep losing the referrals they are supposed to send to our insurer. Whoopsie!) which resulted in my first positive interaction with our insurer. So…good job, everyone?

SCHOOL

Barring any weird COVID variant surprises, summer school is happening this year. Cognition is a tough subject and we don’t have a lot of answers, but despite all the crap of report cards and IEP goals, E is still loving books, music, puzzles, drawing/art, and games — and still making choices on what he wants to read/hear/play, which leads me to:

BOOKS

E’s current fave book is Petunia, Beware. If you haven’t read this gem from childhood, you should, because it’s great. So many different voices to do, also more Ridiculous Petunia the Goose, and best of all, a still-relevent theme.

Business Support Services (NEC)
This is the scene where all the wild predators (the Cruel Weasel, the Fox, the Fierce Old Raccoon) are arguing over who gets to eat Petunia. (also Bobcat, offscreen)

I am trying to end on an upbeat note here! CHEEEERY STOICISM, MY HONEYS!

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