… at least for the time being. Taking Jennah to preschool was the one most stressful events of each day and it’s only gotten worse. On the day of my last post, “Defeated”, I took Jennah to school and stayed with her the whole time as it’s now required that I stay, since there is not a full-time nurse at that school … or transfer to a different school. During circle time, she slept. Then she started seizing. I was already in a dumpy mood and could do nothing more than roll my eyes and think, “really?” I asked the teacher to get the Diastat ready, just in case. She knew exactly where it was kept and even got out a disposable mat; she was calm and well-prepared. This was reassuring. Luckily, her seizure ended in less than a minute, so no further intervention was required. Unfortunately, the seizure pretty much knocked her out for the rest of the day, so she slept through her therapy session and the rest of the school day. Great. We kept trying to go back to school, but she just sleeps the whole time. If she’s not sleeping, she’s screaming because she wants to sleep. If she’s not screaming, some other child in the class is screaming, which makes Jennah start screaming. It’s madness and completely unproductive. We take her to school for the social interaction and therapy services. But we’ve been accomplishing neither and just distracting her classmates from learning. So unless Jennah starts waking up more, I am not taking her to school.
We have also been seeing an increase in Jennah’s seizure activity. We are still trying to wean off of the phenobarbital, but it’s becoming clear that she needs something to replace its effects. Therefore, we’ve added yet another new medication, Onfi (Clobazam). It’s newly FDA approved and we are lucky that our insurance will cover it. It’s only been a few days since we started this new med (she is also still on the Lamictal [Lamotrigine]), but we haven’t seen any seizures … so fingers-crossed!
On a more positive note, we took the kids to Great Wolf Lodge during Spring Break. Jennah did cry a lot and vomited a few times, but when we got her into the water, she was just thrilled and LOVED it! The girl just loves water … and the obnoxiously loud white-noise of the generator in the waterpark .