April 29, 2015

Moving Forward

It's been a while since I posted anything and I guess it just feels too depressing to post that Evan had another seizure, the meds aren't working and we are scared. That has pretty much been the routine lately.

Ever since our trip to Texas we have been grappling with the idea of what it would mean for Evan to have brain surgery. The risk is that he may have a permanent deficit on his left side, particularly his left hand. The expectation is that he could end up with a "helper hand" and be unable to perform tasks requiring fine motor skills. He could be seizure free but there is never a guarantee of that either.

It's different talking about a potential surgery with an 11-year-old and important to honor his opinions throughout the process. Evan is more brave than Rob and I and has told us he wants to have brain surgery. He will go on to say that stopping his seizures is more important that the use of his left hand. Heavy topics of discussion are going on in our house on a regular basis!

So, we are going to NYU Hospital next week where Evan will be evaluated for brain surgery. He will be in the hospital for about a week for monitoring with a video EEG. We are hopeful for positive answers  from this amazing team who has already changed Evan's life for the better.