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!