Living With Epilepsy | Hailey's Story

click to begin

Youtube

It was really scary as a first-time parent and witnessing, you know, a seizure
in a normally healthy little girl. It was, it was terrifying and she was having
30 to 40 seizures a day.
She was having so many seizures she was missing out on all the things
that little girls her age should be doing. Since we didn't have a cure or a
solution at that time, it was kind of like this is gonna be your lifestyle.
Like this is how you're gonna live and I mean it was a roller coaster. And
that's epilepsy. It's so unpredictable. We said all along there has to be a better
life for her. There has to be something else that we can do. Neurology is the
localization. A tiny part of the brain controls the big part of the body.
Phase one evaluation where you bring them into the Epilepsy monitoring like this.
All these testings, which are done only in the level four epilepsy center like
National Children's Hospital to find out the candidacy of their epilepsy surgery.
When we found out that she was a candidate for her epilepsy surgery it
was like a weight has been lifted off. You know somebody found
something that we can do. Until that point we really felt lost. They told us
up front they said look you know there could be serious complications and as a
parent to have to make the choice you know do you live with her struggling and
live with you know more disabilities? It's a lot to process. What Haley had is the two
stage surgery. We call it intracranial monitoring. They open the brain, put the
EEG leads on the brain and map the seizures. As with most cases in surgery every
patients a little bit different. For patients like Haley we can conduct
further monitoring with intracranial electrodes. We can map out the eloquent
portions of the brain to avoid them in a potential resection.
I remember seeing her for the first time after surgery and she just looked like a
little angel.
We didn't think that she would be able to move her left side at all because the
the area of her brain that the seizures are coming from controls the motor
function of the left side. And she looked at me and I just I asked her I said you
know can you move your arm? I had no words it was amazing.
Through everything we've been through right now we're seizure free. And she's
just so happy, such a happy little girl. It was Hailey's first day of
kindergarten, I got excited and I was happy so I figured I'd call Dr. Gedela.
I just wanted to leave this message for Dr. Gedela.
I just wanted him to know that Hailey started kindergarten today and she
demanded to ride the bus and we're just really thankful for everything that you
guys did for us. He saved her life. She wouldn't have got on that bus if it
wasn't for him and I needed to tell him that.

A Day in the Life of Pediatric Orthopedic Surgeons Game Theory: How RICH is a Pokemon Master? Film Theory: Thanos Was RIGHT!! (Avengers Infinity War)

Living With Epilepsy | Hailey's Story

Latest Posts