February 20, 2012

EEG in Long Island

Evan is having a multi-day ambulatory EEG at Cohen's Children's Hospital in Long Island. This is the first time he's had an ambulatory EEG and it has meant that he is not in a hospital and is free to move around.

In the wee hours of the morning before we got to NY Evan had one of his typical seizures so as we drive up to NY we figured this trip wouldn't give us a lot of info unless something is going on that we aren't seeing.

Last night Evan surprised us with a seizure on the last night of his EEG. I hate the seizures but I'm glad we finally caught one for his doctor to look at -- I just hope the machine is working and all the leads are still connected! The down side is that this seizure was only four days after the last one and we don't want to see them happen more frequently.

We've been staying at the Ronald McDonald House of Long Island and last night they gave us tickets to see the Globetrotters and meet a few of the players before the game! It was amazing! We didn't have anything for them to sign so Evan had them sign his EEG cap!

February 07, 2012

Seizure Watch

Life with epilepsy is complex to say the least. We chase after freedom from seizures for Evan, trying different medications, enduring different tests, wishing on stars and praying to a God that remains static.

It's been 14 days since Evan's last seizure and this is longer than usual. These longer periods of time between seizures used to offer relief and hope but now those feelings are all too often tainted with fear and anxiety.

I'm next to Evan in the dark, watching him sleep, listening to him breathe. I don't know if he'll have a seizure tonight but I don't want to sleep too soundly in case he does.

I'm tired of the epilepsy routine that has taken over so much of our lives. I'm not sure what we should be doing differently but I think we need to figure that out before it starts to take a toll on Evan.