Thursday night update

We're here at Children's Hospital for the first night of what I hope will be a short visit. Ella's drifting off to sleep in her crib as I type. She has been such a good sport so far. Just really playful and laid back, which has been so nice. The only fuss she made was during the EEG hook-up itself. That was seven or eight hours ago, and so far no abnormal facial movements have been observed. The event button is here, just waiting to be pushed. I asked the pediatric resident if they were gonna keep us until an event was recorded, but he couldn't say for sure since it would be up to the neurologist. The nurse later said that they have kids "sit here for five days waiting on something to happen." So my hope is that we can capture an event and that it can happen sooner than later.

I also asked the resident a question that has been burning in my mind since Ella's four-hour EEG right before Christmas. We never really had EEG confirmation of ACTH's effectiveness after she finished her course of treatment, though it was assumed since the spasms went away, so I asked if there was any evidence of infantile spasm-like activity (called hypsarrhythmia) on the most recent EEG tracing. He said it was best left to the interpretation of the neurologist but he read went ahead and read the dictation to me anyway. It started out by saying, "this is a mildly abnormal EEG." Already I was encouraged because the report from her very first EEG last summer was (and I don't think I'll ever forget these words) "very abnormal and worrisome." It went on to say something about noting epileptiform activity in the right frontal lobe (which is where her brain abnormality is), mostly during sleep, that does not have any clinical correlation--in other words does not manifest as an observable seizure.

That's about all I know so far. I expect to see the neurology team in the morning and will surely know more by then. I'll update after that. For now, I'm heading to bed. Goodnight!

♦