Friday Update

Oliver is a bit under the weather, doesn't have much of an appetite and has been having some vomiting and diarrhea. We are trying to keep him hydrated as much as possible and hoping this passes soon. He had another seizure today, so that makes 5 for the month and while they are less intense I am a bit sad that he's had 5 in 17 days and worried December will close out with more seizures than November. I had resolved to believe that we would never get seizure free but I was hoping that each month would be about the same or better...it's hard when we feel like we're taking steps backwards.

Hopefully as the month continues on he will feel better and the seizures will come less frequently. It could also be because we're weaning his Clonazepam but I don't know how much that drug is actually doing for him. Going to keep weaning it anyway and see if he settles down eventually.

It's been nearly 10 months that we've been battling seizures, hypsarrthmia and developmental delays. Some days I wonder if this is just always going to be how it is. I can't believe he has had this chaotic pattern in his brain for 10 months, if not more. that's a lot of time to lose in terms of development...and that's only the epilepsy side. We have no idea how much of this is from the CDG and one of my biggest fears is that the CDG is causing so many of his delays and they'll remain even if we do get rid of the hypsarrthmia. The uncertainty is a bit paralyzing and when I stop to think about the very real possibility that his brain will never get a break it makes me so sad for his future.

I keep thinking so many kids push through this and come out on the other side and start making progress...and I keep waiting for it to happen in our house.

Tobin has his big Christmas show tonight. Oliver's class is doing a song as well, but since Oliver cannot hold or shake the jingle bells and is a bit under the weather he will not be participating. We are hoping he feels well enough to come with us to watch Tobin.

Very much looking forward to him feeling better and hoping this bug passes quickly (without involving everyone else in the house!)