May 14, 2010

Sideswiped by an ice cream truck.

This morning, a sign of spring arrived: the ice cream truck. (The Dad's Ice Cream truck to be exact, a Salt Lake City institution.) I LOVED ice cream trucks as a kid! I got so excited, I turned to tell Bertrand. That's when I got "sideswiped" by the ice cream truck. First off, Bertrand can't even have ice cream because he is on the ketogenic diet--a high fat, low carb dietary regimen for intractable epilepsy. Secondly, even if he could have ice cream, he wouldn't because it is not between 98 and 103 degrees (the temperature range he demands because of his sensory issues), he can't hold the cone or feed himself (because he has almost no fine motor control and very little gross motor), he can't understand the concept of the ice cream truck (because he has almost no expressive or receptive language), and he can't even really see the truck (because he has cortical visual impairment).

Part of why this was hard is because Bertrand has been doing much better seizure-wise thanks to the ACTH injections. Bertrand has had no myoclonic, atonic or tonic seizures in 9 days. When I put my finger in his hand, his fingers don't twitch as much. The past 2-3 days he's been sleeping more, but he sleeps more every time his regimen has a big change. Bertrand's weight is down to a healthy 31.4 lbs., so the thickened water is working. He is still having absence seizures and clearly spikes based on the mild twitching, but we expect that we'll see some fairly big changes on his EEG this coming Monday.

I know Bertrand is working as hard as he can while dealing with a difficult ketogenic diet, high doses of meds, hormones/steroids, twice daily shots, scarred veins, invasive testing and more than any kid his age should be dealing with. He is my hero. And he deserves a break. I'd been hoping that if we could stop the seizures he'd be able to regain some of the skills he lost, if not gain new ones. Now it looks like I am finally and clearly seeing the effects of his brain damage. Regaining his lost skills will be an uphill slog. But we'll do it--just like we do everything else--a day at a time.

The second time the ice cream truck drove by this afternoon, Bertrand heard the music ("It's a small world") and smiled. Turns out, he likes ice cream trucks too, just in a different way from his Mama. He's an amazing boy, my son!


  1. Can you believe the first time I saw an ice cream truck was when I was college? I thought they were only something that existed in the movies! C feels B's pain a little. He loves Ice Cream and can no longer have it. We have tough little guys. You are tough too.

  2. Often when I read your posts I don't know if I want to cry or to smile. Your unwavering optimism MUST waver sometimes. I can't tell you how much I admire you.

  3. I hate those moments, it does feel like getting hit by a truck too. You're right. He found enjoyment in it in another way and that is amazing. The way I get around it which may not work for his sensory thing is I put gatorade zero in popsicle molds and let her go at it. She'll eat a little bit and I feel she wasn't left out.

  4. That's AMAZING he has had very little seizures!!!! Congrates "B" for the ice cream truck...i get side swipped with it being warmer weather in general. the yummy treats and snacks etc. :( at least he enjoyed the music :)