Gabrielle has recently had several episodes that concern us. A few weeks ago, when I would awaken her, she began taking longer than normal to begin interacting with her environment. She might flutter her eye for a second or swallow hard. My heart would skip a beat as I held my breath and prayed a seizure wouldn’t follow. I began watching her very closely. Last Sunday, I woke her up from a nap and she shivered slightly for a second and I noticed a very subtle shaking of her right arm and leg. My heart sank.

Throughout the week Gabby began asking to go down for a nap only a few hours after waking up. She began taking 3-4 hour naps and acting more tired and irritable. Her appetite has diminished and she has been less energetic and active. We had a little virus in the house so I hoped some of these changes were related to Gabby battling this recent cold. Then yesterday Gabby had two very strange “events” while we were attending a friend’s birthday party. She seemingly fell asleep in a chair while eating her lunch. I grabbed her and she remained like this for a minute or two. She pulled out of it and seemed a a little sluggish and disoriented for a bit. An hour or so later she fell over and instead of getting back on her feet to continue playing she just lay there completely still and her body was rigid when I went to pick her up.

I contacted Dr. Weiner about her recent MRI and everything looks good in terms of hydrocephalus, etc. I corresponded with Dr. Devinsky this AM and he is recommending an increase in her Trileptal, an EEG, and a blood draw to check Trileptal levels. Dr. Devinsky and Dr. Weiner are wonderful docs if you’re looking for a good neurologist or good pediatric brain surgeon.:) They just amaze me with their responsiveness!

I really wanted to write a post about how Gabby continues to soar developmentally. I wanted to tell about how she has beaten the odds. How she has shocked the medical world and amazed the doctors. I wanted to detail her physical and intellectual accomplishments. I wanted the “happy ending” so badly. The fairytale ending where everyone lives happily ever after. But could I really trust myself to write the ending? Little old imperfect me? A fallible human being struggling in an imperfect world just doesn’t seem like the right person for the job. So once again I lay down my pen and remind myself I am not the author of this story.


  1. Thanks for letting us know Kelly. We will be praying for you, your family, and sweet Gabby.

  2. Kelly,

    Our hearts break to hear about what happened with Gabby yesterday. As I read your post, Steven Curtis Chapman’s CD was playing the song “YOURS.” This song echos the last line of your blog “I lay down my pen and remind myself I am not the author of this story”

    It’s all Yours God
    My life is Yours, My heart is Yours
    My hands and feet are Yours
    Every song that I sing
    It’s all Yours, all is Yours
    All belongs to You
    Our gifts are Yours, God
    All our dreams are Yours, God
    All our plans are Yours, God
    This whole earth is Yours, God
    Everything is Yours

    We continue to pray for your strength and comfort.

  3. Praying for you all!

  4. We prayerfully accompany you through this “story” and trust it will be full of more love, joy and peace than we could have ever imagined, if we were the authors. Thank you for telling us this next chapter. We miss you!

  5. Nancy and Steve says:


    We were so saddened to read your latest update. Sweet, precious Gabby deserves that fairytale ending and we will continue to pray for her and for God to give you and Duff strength, faith and hope as you continue this journey.


    Nancy and Steve

  6. Stephanie Thompson "Auntie" says:

    Lots of prayers and support and hugs for you all.

  7. The Ditto's says:

    Our thoughts and prayers are with your family. We would like to bless you guys. If there is anything we could do for your family, please let us know.
    The Ditto’s

  8. Margaret and Graham says:

    Hi, Kelly and Duff. Thanks for the update. We’re always thinking of you all, and we’re praying for you. Hang in there – you are great parents and your kids are so lucky to have you.

    Margaret and Graham

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