still having seizures

Oliver has had 3 seizures since his latest Clonazepam drop on Wednesday last week. They are coming every 48 hours and afterwards he screams and cries and is really upset. I think it might be because he is more alert/aware and either upset from the seizure or whatever is stressing him (gas, teeth, a cold, etc) is making him cry like a normal 9 month old baby would. Oh wait, he's 10 months old today, I just realized....I just want time to stand still because it makes me really sad that he will be one year old soon. Still not holding his head up, not rolling, not laughing at us. other babies are crawling, cruising, feeding themselves, drinking from sippy cups. We are still just stuck in newborn mode still. While everything changes around us, Oliver is still stuck in the same spot. He is getting more therapy now, we finally have our PT set up to start this month and he has had two OT sessions now. His private PT found a great little cage/bungee cord setup that allows his neck muscles to be isolated so we are hoping to see some progress there. We just keep pushing on ahead with his therapies despite that fact that his seizures are uncontrolled. Hopefully he can still develop (even if it is slower than molasses) and move forward despite having seizures. We are meeting with an epileptologist on Friday, then we're off to Mayo the following weekend, and then a week or so after that we have a follow-up with our neurologist. Between those 3 dr visits I am hoping we get some plan to move forward regarding his medications and someone has some idea for a way to help him. my worst fear is that even if we COULD stop the seizures, and decrease or eliminate the medication that he will still develop incredibly slowly or not at all, and then we won't have seizures, or hyps, or meds to blame it on. Just the CDG.... scary thoughts.