new room...

Damonito's bedroom is getting an overhaul. New paint. New flooring. He now has this great spongy pad on his floor.


He needs a soft spongy floor so if he has a seizure and falls he won't hurt himself. He's having about 2 grand mals a week. His neurologist is going to boost his VNS, his meds are already at the maximum. It's all part of having Lennox Gastaut.

Check this

Read the Axelrods' story

don't let it bring you down

There is a great series of articles about epilepsy in Newsweek this week. The first article explains how common epilepsy is and that research for a cure is underfunded. You should read it... you can get it on-line at www.newsweek.com. It's worth reading.
It was interesting because I understood everything they were talking about. All the different drugs, the Keto diet, the VNS, brain surgery and of course, the seizures. This paragraph from Jon Meacham's article A Storm in the Brain resonates with me, with us so much:

Though the most overt examples of discrimination and demonization have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large. Why? One reason is that advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition. (Which, for two thirds of patients, it is. But that still leaves a third for whom it is not.) It is thought to be rarely fatal, controllable by medication. There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight.

I think about it everyday. I worry everyday because I know that epilepsy could take Damonito's life any day.
That said, he's doing well. We're seeing a few more drop seizures but he's still having far fewer seizures than a year ago. Clozabam is helping him tremendously. Changing the battery in the VNS has proven effective, it seems to be managing the seizures he was having in his sleep. He's having about one grand mal per week. He's doing ok.
And he lost his other front tooth. He's pretty cute.

Pediatric Epilepsy Monitoring Unit

I have to give a shout out to St. Joseph Hospital and the Barrow Neurological Institute and their new Pediatric Epilepsy Monitoring Unit! How cool is that? An entire unit devoted to epilepsy in children. It's amazing. It's beautiful!

VNS

On February 9th they will turn on Damonito's new VNS. They had to wait for a couple of weeks to make sure that his body didn't reject it. He's doing fine. He's developed a new type of seizure, myclonus, that are occurring in his sleep. These are muscle twitching kind of seizures that indicate that his Lennox Gastaut is progressing. The hope is that the VNS was actually helping these seizures that generally occur in his sleep.

a battery of surgeries

Damonito has had five major surgeries. His biggest surgery wasn't even the most distressing. Although his brain surgery was scary and huge he came through it like a trooper and recovered rapidly. It was his tonsils, outpatient for most people, that caused the greatest stress.

He had an anaphylactic reaction which caused seizures which caused unresponsiveness for several days while we had no idea whether he was going to pull out of it or not.


So when Nicole texted me on Wednesday to tell me that Damonito was having surgery on Friday to change his VNS battery that had gone dead, I was more than a little concerned.
I had a huge knot in my stomach when the intern said "this will be a walk in the park compared to his other surgeries." Yea. We'd heard that before.

The upshot is, the surgery went well. Damonito did great. He's home. He's happy. And he has a new battery for his VNS that is tiny compared to the last one he had.

tough tired

Nicole and I have been trying to work out my phone troubles for a couple of months. The "troubles" are that I can't receive photos from just anyone on my phone. Well, a more accurate statement would be that my phone service doesn't allow photos over a certain size. Nicole figured this out and my first test photo was a photo of Damonito sleeping, with the caption "tough day at school."
Later, I was talking to Damon and I asked him about Damonito's rough day. He seemed confused and was explaining that Damonito's school had brought in a truckload of snow for the kids and that he had played all day. I mentioned to Damon that Nicole had sent me this photo, Damonito was sleeping, with the caption, and I assumed he was sleeping because he'd had a "tough day" of seizures at school. Still confused, Damon asked Nicole while I was on the phone and it occurred to all of us at about the same time that what Nicole had meant was that Damonito had had a "tough day of play" at school and he had passed out from being tired when he got home.
A "tough day" had always meant a bad seizure day to me, so it was nice to have a "tough day" just mean a long, tiring day. Personally, I'm hoping for a lot more of tough/tired days.