I was in Vancouver for two weeks, mostly for work-related activities. Near the end of my stay, Fawn flew down with Jade and Halia. Upon seeing them again, I marveled at how much kids can change in such a short amount of time. My jaw was constantly dropping because of the things that Jade was saying and the things she could do. After all the drug- and seizure-induced delays, we're really seeing progress now.
Halia, too, is as good as walking. She still chooses to scootch on her butt over long distances, but she's perfectly capable of doing it as a biped.
Fawn and the girls came down because it was, once again, time for Jade to get an EEG. We wanted to know: Will the EEG show any progress? Are the ongoing challenges and tribulations of the ketogenic diet worth it? Has removing her allergens improved the situation?
We sleep-deprived her and did the test.
Afterwards, we met with the epileptologist who told us the results. When she was sleeping, Jade's EEG showed that she's still having seizures and that the seizures are disrupting her sleep, effectively waking her up. Being woken up shortly after you fall asleep is not a good thing. We have more work to do.
On the bright side, Jade's EEG also showed that she had NO seizures during the waking portion of the test. None. Zero. Zippo.
Overall, it's a major improvement.
Now, we're weaning her off of the last of her medications, will likely do another ratio increase, find a substitute for her supplements (which contain an allergen), and will remove any newly discovered allergens once we get the expanded allergy test results.
In three months, we'll go back to BC Kids, but this time Jade won't have a short, sleep-deprivation EEG. Instead, we'll hook her up for eighteen hours wand let her sleep, eat (keto food), play, and live life like any normal kid with a dozen wires attached to her head.
She'll look like some kind of crazy discount-store cyborg and I, for one, am looking forward to it.
Vive la progrès!