so confused

So Oliver has seemed to be feeling better after his sore throat and low fever and he went a few days without seizures...from June 29 to July 4. He had a seizure about an hour after we got back from fireworks and we thought it was maybe because we were sitting outside for so long and it was warm or something. I was hoping it was just a fluke, but he had another seizure today at daycare, so about 2 - 3 days apart. It could be that he still has a stuffy nose, or is in a state of constant teething at 9 months old. Or maybe the medication is the problem. We haven't even started our wean because our neuro said to wait a week and we keep calling back reporting seizures and being told to wait one more week. At this point I don't know if a wean is a good idea...or maybe he is already kind of weaning since he has gained weight and been on the med for awhile and his body could be getting used to it. It really seems like his body gets used to a medication and finds a way around it to have seizures. which is scary, because eventually we'll run out of medication. Maybe it's time to try the keto diet?

I would love to know what his EEG said last time. The dr said it showed improvement but I assume he still has the hyps...and what happens when that is gone and he's still having seizures? This is all such a mystery and it just plain sucks!

In the meantime he's been doing well otherwise. He has more awake/alert moments and seems to be laughing/smiling big time when Jason bounces him up and down. Who knew he liked to bounce? I wonder if taking him off the clonazepam would allow him to reach a milestone? My goals is for him to hold his head up by his first birthday but it doesn't seem likely with the clonazepam. At the same time, I'm tempted to increase the dose to get the seizures to stop but then he'll be even more addicted!

We have speech therapy starting next monday, and OT starting at the end of the month so at least we're moving along with Early Intervention. Hopefully they can find a good PT solution for us soon.