Under Control: An Epilepsy Update

Control is not something I feel I have much of these days. It takes so much for us to just maintain a normal routine, and that’s mostly out of our hands, too. It depends on who is sleeping well and who is hungry and if I don’t get away when Our Princess is sleeping, then how do we juggle things like groceries and making dinner, because she is my shadow. All. The. Time. It’s sweet. I love it so much. Having been away at the office five days a week for so much of her first two years, there was always that worry I wasn’t with her enough. (I think it’s safe to say she’s not holding any grudges.) So I think if you take all of her needs and you throw in our free-style rapping, ninja-loving, super-energetic wild man who never, ever takes a break. Ever. And yeah, it’s kind of just crazy all the time around here.


And yet, when I start to feel our routine, (ok, so it’s more of a small town’s train schedule that is written on paper, but hardly ever kept, because of the sheep stuck on the tracks or the sleepy old driver. Routine might be a little too strong for us.) Still, when I feel it coming back into focus, I do almost have a sense that we are managing all this crazy.

And that brings us to today. Despite the poke-my-eyes-out-with-a-babyspoon teeth grinding and the no-nap zone, we are getting back to normal. Little bit feels much better. She popped up this morning with big smiles and a giant’s appetite. She is speed walking again and happily spending five minutes here and there playing with a toy. So all in all we survived. The epilepsy, dare I say, is under control. For now.

Why you ask, is she still having seizures after having her entire left temporal lobe removed? (Read previous posts here.) Let’s hold that thought for a couple more days until we can have our big neurology follow-up. For now, I can share in my most basic knowledge that Reese’s immune system is completely compromised from the long-term steroid use. The immune system is not just for sicknesses like viruses and infections, it’s also very important for responding to any type of stress to the body. Surgery, especially one like removing adenoids, where tissue is removed and left to bleed (I assume), well that is the kind you want to be careful that a compromised system can handle. So, we probably didn’t anticipate how much she would react and the seizures were the sign that she needed more help healing. It basically means her body would not be able to do it on its own. It was a sign for help.

We stayed on top of the fever this time, we busted out butts to get every dose of every med in right on time, and I’ve been psycho about washing hands and making sure she sleeps.

I have been doing lots of research on my own and you can bet I will come up with some better explanation for the bigger problem that looms around us in time. But for now, I know what everyone wants to know is how are we. The answer is, things are under control, so we are doing just fine.