dreading the phone calls

Everytime my phone rings now I start breathing heavy and get really sick feeling, as soon as I see on the caller ID that the call is coming from daycare I know...it's another seizure. The hardest part is answering the phone and being greeted by Oliver's screams. It breaks my heart every time. Not only is he having a seizure, but I can't be there to hold him while he goes through it. I just hung up with our daycare director. She hates making the calls, and I can hear it in her voice whenever I answer the phone. Now I sit here and wonder, when is the next seizure coming and will I be there to hold him next time?

The seizures are different now. The spasms are only on the right side of the body. This leads me to believe that they are originating or affecting the left side of his brain. This could mean that there is something there causing the seizures and maybe a surgery would be a possibility? or maybe not...I've left a message with the nurses at our dr's office to ask about this. If only I could actually speak TO the neurologist. It's hard when the nurses call back, give you a brief one sentence answer and then if you ask more questions they have to send it in a note to the dr. Maybe he could call me back just once?

We started weaning the Clonazepam yesterday since it doesn't seem to be stopping the seizures anymore and (in my opinion) it's really hurting Oliver's development as he has been extra floppy on it. But the worst part of all is that he is still having seizures despite being on TWO anti-seizure medications. It doesn't seem that we'll ever gain control of these seizures. Maybe if we increased the dose of both of his medications. but then what? he sleeps all the time? I know some kids have seizures daily and still go on to develop at their own pace and have great little lives. But Oliver isn't even developing at all. I would settle for slow development. But at this point, he's 9 months old and can't hold his head up yet. Other babies are crawling and standing and babbling. He is just our little lump. I wonder how much his development would be slowed by no medication? Between the seizures and the CDG he is really in bad shape, yet physically super healthy. Organ function is great, he is growing taller and getting heavier, and he looks like a normal baby when laying down next to any other baby. But something isn't right. We can't get control of these seizures. I just don't know if anything is going to work, or if there is anyone out there who cares enough AND has the medical knowledge to make a reasonable suggestion. Because everything we've tried so far has failed. It's hard to be patient all the time, waiting for the dr to call back, waiting for the dr to formulate the next step in Oliver's treatment, waiting to go see a new doctor at the mayo clinic. Waiting waiting waiting. I'm tired of it.