Just when you think you turn a corner on this journey of life, you find that you DO turn a corner and someone put a wall there. My nose is pushed in from hitting so many FUCKING walls.
WOW. Just crying and angry and upset over everything, hard to console. Things that used to be easy things that would gratify him, he'll just slap me in the face with it when I give it to him. If he were quicker, I'd have a bite mark on my cheek today. But I was a tad faster. But he went after me like that chick in the Jennifer's Body commercial, no shit. I was stunned by that, I've never had a child go for my face as if he intended to chew it off.
A few moments of calm, but it was a rough, rough day. Hard to concentrate with him in the house. I hate to say it but I am looking forward to when he goes back to getting care outside the home, ala Day Care or the GP's, if they'll still do it. Saturation point here I come. Oh wait...already there.
Mentioned this in a comment, but had two nice calls, one with his Case Manager and another with someone from Cleveland Clinic. They said it was cool to go ahead and start the Vigabatrin wean. I'm glad they decided that, since we were gonna do it anyway. Slow wean, 250 every two weeks, and that was, ironically, EXACTLY the schedule I had planned.
Paging Dr. Lilly, paging Dr. Lilly...STAT!
There was a moment this afternoon, while I was trying to get some work done, where I almost just picked up my machine and threw it across the room, the screeching was that bad. Sounded like Rodan had entered my living room below. And no matter what I tried to do when I went down to try to help, well, that was when he turned into Vampire Boy, mentioned above.
Well, shit happens, right?
The CC guy said this was fairly common post-surgery. Sensory Overload was what he called it, what a lot of people have called it. He did say if we had ANY gut feeling at all whatsoever about his pain increasing, then by all means go to an ER and get some tests done, though he also said it was not likely based on our descriptions of how he was being.
Funny...when I actually said that I felt a bit awkward about taking up so much of his time on things that were probably trivial, he said something that reminded me of why the Cleveland Clinic is so great. 'No fear you have over your child's well being while recovering from a surgery like this is trivial.'
So...that's the latest. I hear Rodan in the other room. Gotta go deal...
But, still no seizures, and that's a good thing.