The Kid’s EEG Results, Latest


It’s really fun to call your insurance for preauth and explain why your kid is getting botox. You would think people wouldn’t make jokes, but they do! Ha ha! Baby leg wrinkles, am I right? Oh, fine, I guess it’s covered. Jeez, why would you want to get that for a kid anyway? Ugh, ugh, ugh. So after that nonsense, we made our appointment and went ahead with the procedure. It was uncomfortable but quick. E was under twilight sedation and, I think, bothered equally by the buzzing sound of the injector as much as the injections themselves. We have a week to see results. Not sure what we’re really expecting to see, though. Increased mobility? But he doesn’t walk without supports. Maybe he’ll try harder to roll from back to front? Who knows. We’ll see if it’s worth it for another round.


We spent a couple days at the children’s hospital for E’s 24-Hour EEG. Overall, I would rate it D-, do not want to do again. But it was 50 percent crap and 50 percent okay.

Things run smoothly at Children’s. We checked in early and went to imaging for the Hookup. The Hookup, as you might guess, is the 5-20 minute procedure where a kindly technician glues leads to your child’s head while your child screams bloody murder despite the attempted distractions of bubbles, PBS cartoons, gentle music, low lighting, and the time-tested “Guess what? Chicken butt!” routine. Luckily our kindly tech was also awesome at her job, and she had him wired up and wrapped in short order. She also put him in a soft gauze version of a knight’s mail coif:


to hold the leads in place while he moved around and slept. So we sang him a lot of this:

And made a lot of Sir E jokes, and tried to keep him from grabbing at it too much. We slept (or rather, “slept”) on a tiny single pullout, ate a lot of snacks, watched Man of Steel and Planet of the Apes for laffs (or rather, “laffs”), and got E’s EEG results. Surprise! He is no longer having seizures! Hooray!

However, we did receive verification in slightly less vague terms than usual that:

  1. His EEG, or baseline of brain activity, is still abnormal and probably always will be. From which we extrapolated that
  2. He will always be extremely developmentally disabled. What this means is anyone’s guess.

No one wants to confirm this, of course, because no one wants to be wrong in case something turns out different. But none of our doctors ever want to tell us anything depressing, it seems. So we assume what we can and get depressed anyway.

Overall we are all fully sick of hospital stuff for the time being, and are enjoying being back home. But it was as comfortable a visit as we could expect. I love all his nurses and techs — they are consistently professional and amazing, and they made the stay bearable.


3 thoughts on “The Kid’s EEG Results, Latest

  1. So glad you have good nurses and med techs that you like. That makes a world of difference. Hugs to you and A and Sir E.!

    Here in CNY, SU is closed for the SECOND DAY IN A ROW due to the Winter Warlock dropping 18″ of snow. Yay spring?

    Any word on the book?


    1. Thanks! Hugs back at you!

      18 inches! Oh Central New York, I miss your surprise snow dumps. So glad they’re canceling/closing for you at least, so you can curl up on the sofa with your hot chocolate or something stronger. :-)


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