Well, it has been over three and a half weeks with only one seizure.

As I write this I realize that it sounds slightly insane to celebrate “only” one seizure in three weeks. One seizure in a lifetime is not great, am I right?

However, in the two months that preceded this three week period, Esmé averaged 14 seizures per week. She had 26 in one six-day period in mid-August, 19 in a 27 hour period at the end of September…just to give you an idea of the absolutely insane number of seizures she was having. And, looking over my chart of her seizures starting in December, I am pretty certain this is longest we have EVER gone with so few seizures since she started having them.

No, we are really lucky that her seizures are short, about 35-55 seconds on average. She’s never had one that reached the two minute mark, thank the gods. The real risk with them is that she tends to stop breathing–and not always start back up on her own so easily. He loses consciousness, turns blue, and we need to give her oxygen at times. Obviously this is not ideal. Also, having that many seizures means that you are missing valuable fun, learning, interacting, etc.

With the hurricane heading toward us, I was really worried that we would see more seizures. She had been acting strangely the last few days–very hyper, almost aggressive. And, in the past, we had noticed  that during stormy weather we would see seizure activity…I had this image of our darkened street lined with downed trees trying to get her to the hospital during a cluster of seizures. But we fared just fine both in that we had no seizures and no real hurricane problems–our power never even went out.

Regardless, it is the strangest feeling to feel once more as though I can not have my gaze fixed on her all the time. I have had a few moments when I leave her for a quick moment and when I walk back in she seems tense or distant and I feel that familiar panic rising up from the pit of my stomach…only to see that she is tense because she is holding tight to a funny toy and smiling!

With going so long between seizures Ezzy is happy and learning new things. She is potty training (?!) and becoming more active, more vocal, more funny, more insistant. It is fantastic.

I know that we will see more seizures. They might change. She might grow out of a med dosage before we catch her weight change. Seizures breakthrough good meds all the time.

I know we will see more seizures. I have to be ok with that…but for now I am just enjoying.