Ever since we brought Allie home from a San Francisco hospital in June of 2007 after emerging from a coma induced by a severe brain injury, her hyper-excitable neural networks have caused seizure activity. The way these episodes have manifested themselves have evolved over the years making them difficult to describe to doctors and even more difficult to predict.
There are two different seizure manifestations that Allie has:
- non-epileptic startle seizures
- epileptic seizure events
We learned that with many of these startle prompted seizures we were able to intercede talk her down. But, every once in a while with no warning, she goes directly into an epileptic seizure and all we can do is watch helplessly.
Where we are now is we can count on her to have at least one startle event a day, but two is more the average and about five full epileptic seizures a month. The epileptic seizures used to take place about thirty times a month but that number has come way down in the past year and a half.
Our concern lately is that while the epileptic seizures happen less frequently, and the two categories of seizure are much more distinct from each other, they are both much more intense when they occur. That is why we were at Miami Children’s Hospital today.
That’s how tough this kid is. She is so determined to be happy and have fun, that her damaged little neural network is overridden when she’s out of her normal environment. It’s frustrating when we’re trying to learn something. She’s like any other kid when you take her out of the house; she thinks the rules are different and she acts out accordingly.
Parenting is a never ending adventure. If you have kids, this is not news — even if your kids have moved out. Or moved back in. So much more can be said about that but we’ll save that for another time.
Today, I put pictures and posts on my social media accounts, and the Charming and Beautiful Susan and I appreciate so much those that left encouraging comments and pledges of prayer. We’re so glad to have you guys with us on this journey. There is no way we could do this by ourselves.