Friday, October 23, 2009

Let's Not Get Too Ahead of Ourselves...

I'm trying to remain calm and remember that it's not in my hands but I'm having a lot of difficulty with that.  

We are on our way to Detroit tomorrow night (it's about a 7 hour drive but for us add a couple of more to that).   Sunday we'll begin with a VEEG (it's a 24 hour EEG with video) and we'll stay in the hospital.  On Monday morning we go downstairs for a PET Scan then off to the International House for the night.  Tuesday morning we have an appointment with Dr Rockstar and then back home.  

This is it!  I'm so scared, excited, nervous, anxious, happy.  I'm trying not to get my hopes too high but that's impossible.  Well, impossible until you read so many stories about kids who have seizures, went to see Dr Rockstar, and were told they weren't candidates for surgery.  

Now when I read those stories I cry.  I want this surgery so much for Noah.  I feel like it's his only hope to have any quality of life.  

Bottom line:  The seizures have to STOP.  Meds don't work.  We aren't sure about the diet (even that isn't a long term solution most of the time).  What's left?  Surgery.  

Please keep Noah in your prayers.  We'll let you know what we find out.  Good or bad.  

Thank you all for your support and love you send our way.  



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6 comments:

  1. AnonymousOctober 23, 2009 at 9:09 AM

    I am so glad you guys are going to Detroit. I hope the best for that little "boobie". Drive safe and give him a big fat kiss from Auntie Stacy! Love to you all, Stacy

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  2. Danielle October 24, 2009 at 6:03 AM

    I know you're a mess right now. And that's okay. I think mommies are wired to be a little bit crazy. Especially when it comes to their kiddos. :)

    I hope your little man is a road warrior! And I hope the leaves are still pretty for you guys.

    Try to keep breathing...and squeeze your boys when you need that extra comfort...

    ...danielle

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  3. AnonymousOctober 24, 2009 at 6:41 AM

    Keeping you and Noah in my heart. I hope all goes well for Noah!
    Jodi

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  4. Staci TuckOctober 24, 2009 at 7:43 PM

    Thinking of you constantly! I have butterflies for you and am so anxious to hear how things go. We are praying hard that Noah will be a good candidate for the surgery and Dr Rockstar can work his magic!! Big hugs to you!!!
    Love,
    Staci

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  5. AnonymousOctober 25, 2009 at 7:28 AM

    I'm thinking of you all today and can't wait to hear how it goes. Good luck and so much love to you.
    Cindy

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  6. SherryOctober 25, 2009 at 3:45 PM

    We're praying.

    ReplyDelete

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