Gio's been having more bad days than good recently. He seems to be having more of the extremely long tonic seizures while no longer having the multiple drop seizures or partial complex seizures. The tonic seizures cause him to stop breathing for anywhere between 20 seconds to 45 seconds - it feels like 2 to 3 minutes.
What's interesting is that he isn't lethargic and out of it for long times anymore - he snaps out very quickly. Prior to the diet, he would be out for half an hour to an hour sometimes.
It's a tough situation that he seems to be trying to fight. There are times where I see him looking hard at me just before a seizure and he looks like he feels it coming and is trying to stop it. Then it happens and he cries out when it's done.
They are hard to watch and not getting easier to control.
The issue, though, is we don't know if when he has bad days if he's eaten something he's not supposed. It's tough to keep him away from his little brother who walks around with all the food Gio can't eat. There are days where we here Benicio screaming "NO!" and running away with Gio chasing him...like a lion chasing its prey. While funny, it's sad.
We know one day he ate a cranberry and had a bunch of seizures the next day. Another day, he grabbed a piece of bread so quickly and saw me coming, he swallowed that thing whole! The next night...seizures every hour.
With all this, he is so "here" with us now. He runs around, responds to us, laughs a lot. And then there was this.
Last week his teacher called ecstatic. She has been with him for 2 years now in early-childhood education at a Madison Public School. She said it was his best day ever and had gotten a few seconds of video of him coloring...actually coloring a picture by himself. What's big about this is that he didn't try to eat the markers, didn't throw them away...he grabbed different colors and with a little bit of help colored a picture.
Once I get that video, I'll post it here.
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