And so...just like that, I go from a positive post last night, to a negative post today. That's our ride, that's our life.
It's a goddamn roller coaster.
It's up it's down it's left it's right.
We were feeling pretty good after we got back from Cleveland Clinic, good enough to actually attempt, and SUCCEED, in going out as a family for the first time since this all started. That was Thursday night, we went out to eat and went to ToysRUs. This was a huge...HUGE deal for us. Some parents will understand that, some won't. But to pull the trigger AND JUST GET OUT OF THE HOUSE SEIZURES BE DAMNED was a giant step for us. Giant. I'm glad we did it.
We were even feeling very good last night, though Bennett did have a fairly long seizure cluster in the early part of the evening, the seizures themselves were manageable. But overall we sat, we talked, we laughed and played, and we planned to try this whole LET'S ALL GO OUT TOGETHER thing again for today, Saturday.
But remember when I talked about saturation in that post about how it derails anything Jen and I try to hold on to that is positive? Well, saturation is what we are dealing with at the moment. As of around 1 PM today, and he got up at around 7, he's had THREE sets of clusters. And they are very, very intense today.
Some days...it's just the head nodding and such, but other days it is like this.
Anyway, we only got around a minute in before Jen asked if we really needed to record this. I agreed and stopped the camera. This set was a bad one, you could really see it affecting him emotionally, and I am glad I stopped the video cause it got even worse as it went on. He rarely expresses discomfort in these. He was doing it today. And even though it is important to get some of that on record it is also important to turn off the devices and just focus on him. That's what we did.
He was doing something today I hadn't seen before too, which is why I had the camera out and ready...a sort of 'build-up' tremor that then exploded into the actual seizure itself. Then after the flex, he'd relax, the tremor would build-up again, then release. You probably cannot see it on the online version of the video. I can see it on mine, it's 680 by 480, but I think YouTube shrinks it.
The cluster lasted about 5 minutes, around 46-48 individual SEIZURES. I fucking will NOT call it a Spasm...sorry, I just won't. I won't call Cancer an abnormal cell growth either. I'm sick of us as a society trying to make the unpalatable taste acceptable. So that's 48 on this one, around 35 on the second one, and the first of the day was in the 70's.
So anyway, here we are, officially de-railed again for the day. Bennett is fast asleep, EXHAUSTED from three clusters so close together. Carter ends up in his playroom watching TV, Jen is doing her thing and I am doing my thing. Fragmented yet again, both physically and mentally. It's only, what...around 1:30? We might still salvage the day...might. But probably not, since we both feel like Grade A shit again.
Sucks. I've just got to hold on until we get the next testing round scheduled, hopefully less than two weeks. If his seizures start getting much worse though, I may have to insist that we not wait to start a new second Med trial. Clearly, the Vigabatrin is a total bust, wouldn't you say? The plan was, now that Keppra and Topamax are gone (mistake? maybe, who the FUCK knows?), to give Vig a chance to be by itself for the rest of the time between now and the tests.
But Jesus...it's rough to sit here and just watch him go through that.
Alright I'm done. For now. Maybe I'll try to clean something.