A week has passed since we made it home. And what a week it has been.
Max's first couple of days home from the hospital were really great. He slept all night, and played all day. But on last Wednesday night, his seizures started up again.
We made an appointment for an EEG to see if maybe something new was happening in his brain that we just weren't figuring out. We went in Friday morning for the EEG, and Friday afternoon his neurologist called with the results.
The night before, Max had had four seizures, and he really expected to see a poor reading on the EEG. But in fact, he said it was one of the best looking EEG's Max has ever had. (And boy has he had a lot of EEG's!)
He said the background EEG showed little to no spiking...that's neuro talk for no quiet seizure activity going on. And that he saw no signs of the lennox gastaut syndrome, that he was concerned the infantile spasms could be turning into.
I've also had to email him to clarify this bit, but there was a number of measurement that can help show them the level of development in the brain, based on the background noise. He said that this measurement by age 8 should be around an 8 in a typically developing brain. Max was at a 7.
So all this to say...neurologically, he is doing...much much better than we thought we would find after all the seizures he has had lately. These are not affecting his sleep, they are not affecting his development, they are not affecting his health.
They are just wearing me smooth out!
We have thought for a couple of years now that stress and too much change can cause Max to get into a bout of seizures. I think we're in one of those times right now. Steve has been traveling quite a lot lately, and Max doesn't like it.
We're really trying to make an effort to remind him when Steve will be home. Let him call him, and he's sleeping in Daddy's bed tonight. (I'm just a side fixture!)
This Saturday is his birthday, and I'm trying to think of something fun to do. We're supposed to be getting snow for a good part of this week, but then maybe it will be sunny and nice and we can go to the park, or I found a beach at a reservoir not too far from us. It would be a place he could kick his feet in the sand...that is if it isn't covered in snow!!
I'm having a hard time getting too far into any planning, because we just can't go anywhere where there are crowds, we can't have a bunch of friends and family over for dinner. We just have to keep it low key for multiple reasons. He's been having such a weird couple of weeks with the seizures, and he is still at a higher risk than the rest of us for catching H1N1.
I still wish we could just have some corporate jet pick us up and zoom us off to the ocean like I wanted to do for his birthday. He was really excited about it...or maybe I was really excited about it. I don't know if he's understanding that we're not going to California for his birthday. I've been telling him for over a month now that it's what we're doing for his birthday, and now we're not. Blagh! See what I get for making plans!
I think we'll figure it out, and in the end, he won't care what we do. I just want it to be a special day to celebrate the life of such a special boy. Who is, by the way, asleep now. And since I only got 4 hours of snooze time last night, I just might have to join him now!