busy weeks ahead

We've got a lot going on the next couple of weeks after a relatively quiet spell. We had 18 seizure free days. It was a good run. About a week into our dosage drop with clonazepam Oliver had an afternoon seizure this past Saturday. It was short and the spasms stopped after a few minutes. Afterwards he went back to sleep and woke up 20 minutes later in a good mood. Then, last night he had a really rough time but it didn't match his typical seizure pattern so we're unclear if it was actually a seizure or some other pain response or a new type of seizure or what. We tried an extra pill of the clonazepam, waited a bit and then tried motrin. He eventually settled to sleep. The hardest part is that 8 month old babies sometimes cry, have nightmares, have teething or gas pain, etc. We were so used to a baby that never cried unless seizing that we assume any time he cries that he's having a seizure. The crying wasn't like his typical cry that he has when he has a spasm but it was coming in waves like a spasm. Lots of lower lip pouting. Poor little guy. I just hope he gets through the next 2 days at daycare without a seizure and that we get some good feedback at his 24 hour Video EEG this week.

We go into the hospital on Wednesday morning and should go home Thursday morning. He'll be hooked up to the EEG machine the whole time we're there so hopefully it will give us some insight as to what goes on in his brain at various points in the day. If he is going to have more seizures this week, it would be best if they happened while he is hooked up to the machine. But hopefully soon after that we can increase his dose or change his medication again to get another seizure break. In the week on the lowered clonazepam dose he has been waking up a lot more at night, usually to laugh but we don't know what he's laughing at. I can't just enjoy it, because I have a feeling it's seizure related....but wouldn't it be great if those were a few hours of clarity and he was just making up for lost time by talking and laughing and practicing those skills? He has been more alert and aware during the day time too, which is nice. Feeling a little muscle tone come back and he's been reacting to the sound of Tobin's voice, which Tobin really likes.

He's still eating great and generally happy so we can't complain too much, but these seizures are just really painful all around. I hate that they are so stubborn and keep finding their way around / through his medication.

He has physical therapy tomorrow, then our 24 hour hospital stay and then next week we have eye dr appts for both boys , PT for Oliver, and a follow up with our neurologist. we also have been contacted by the speech therapist assigned by EI. She will be coming once a month and we should have our first appt in the next two weeks. Still waiting for a PT and OT to be assigned. We're doing as much as we can with him during his awake hours at home.

Aside from the seizures we had a fairly decent weekend, Tobin got a cute new haircut and Jason go to see the Cubs/White Sox battle it out at Wrigley Field. I took Tobin to a local street fest with our neighbors yesterday and the boys got to bounce in a bouncy castle, have corn dogs, lemonade, and funnel cake and then Tobin took a nice long nap and also feel asleep fairly quickly at bedtime last night. Might need to get a bouncy house for the backyard....