Living With Epilepsy | Hailey's Story

Living With Epilepsy | Hailey's Story
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    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.
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