Wednesday, April 1, 2009

A Brief Update on Bennett

I don't want to leave anybody hanging that commonly checks this blog for updates on Bennett. You haven't seen anything for a couple of days because I haven't really had the emotional energy to update or anything else. We need a positive turning point, something to cling to and place some hope on, and we aren't getting it yet.

As of yesterday, a second medication is being added to the mix to try and control his seizures. He still has not had a seizure free day since February 12th. We don't know if the new drug, Topamax, in conjunction with the ACTH, will have the desired effect. Nobody knows. It's trial and error with rare seizure disorders. Don't be fooled, Epilepsy is a serious, SERIOUS issue in the world.

There is a meeting scheduled next week with an Epileptologist to evaluate him further and start opening discussions (I think) for surgical options. An Epileptologist is a Neurologist with more training specifically in the field of Epilepsy.

Anyway, that's it. I just don't have anything to offer here right now. We are in a bad place this week, it's hard to feel anything but bad, scared, worried, angry and tired. Getting out of bed takes a Herculean effort sometimes. Some days are better than others, but when you have a few bad days in a row all strung together it kicks you right in the teeth.

5 comments:

  1. Was going to ask you how things were going since you hadn't posted in a while but I figured there was a reason behind it. Our thoughts are with you, and if there's anything you need (I don't know what that could be at this point) don't hesitate to ask. Best of luck, Ken.

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  2. Thanks for this. Pulling for you down here!
    Richard

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  3. i know it seems like it's been a while and nothing's changing but at least you're still actively doing stuff...and the new doctors may have new insight too....hang in there man!

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  4. Ken...

    I promise you it does get easier. Cross my heart. That doesn't mean that your heart isn't broken every single second of every single day. That tears are not always near the surface. These are our kids. I never anticipated how deeply I could love my children. Nor how deeply I could hurt for them! I'm not as strong as you may think...I cried all the home from the hosptial telling God that I can't handle this. That it's too much. I crumble all the time. Buuuut...somehow everytime I crumble...when I pull it back together my love for Trev & passion for rescueing him is stronger. Anyway...take my sappy for what it's worth! *smile*

    Crossing fingers that Topamax is the ticket! Many many families have found seizure freedom with it. It's actually next on our list.

    I know (on that heart connect cause I'm living it level) how freakin' scary the thought of brain surgery is. But I can tell you...every single IS family wishes that it were an option. Right now...where we're at in time & medicine...it's a miracle option. Radical. But for so many kids a miracle.

    ((((hugs from a still very chilly New England coast))))


    ...danielle

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  5. Thanks all.

    Hey Danielle, thanks for posting that CURE vid...I mentioned it in a blog I wrote today.

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