Friday, May 28, 2010

What I did today

Removed electrodes and glue from Sophie's scalp. Thanks to the wonders of technology, she had an EEG that was ambulatory. That meant no hospital overnight. She was hooked up yesterday and sent home with a white mesh turban. Each time she had a seizure, I pushed the little black button on the box that she wore in a fanny pack. She wore it for twenty-four hours and then I removed the sticky electrodes and wrapped them in a paper towel. The little black box went into a larger brown box and the folks at FedEx took it from me. I know it sounds sort of gross, but the phrase brain in a box went through my mind. And Sophie looked a bit like a radical Muslim when she was hooked up (which makes me wonder how many trolls will attack my patriotism, now --)!

A day in the life.


  1. Hope it gives some answers


  2. Yes, hope some answers are in store. Peace, my friend.

  3. Sophie looks so different without the hair framing her face. She is so beautiful .

    How long before you get some information from the data?

  4. I am so captivated by your blog. Your daughter is amazing.
    Now I am going to go and read the rest of your posts.

  5. How could anyone attack your efforts, even your choice of expressions?

    There is too much concern in the blogosphere to avoid standing on people's toes, too much political correctness. It stifles honest expressions of feeling and debate.

    You are simply telling us your story.

    Please don't censor yourself against the threat of potential critics. If you do, your detractors win.

    A bit of black humour in the face of great hardship is wonderful.

  6. I don't know what to say, except hope and prayers, floating your way from Nebraska to California!

  7. Someone just sent me this quote. Thought of you:

    "Women are Angels
    And when someone breaks our wings....
    we simply continue to fly.........on a broomstick...
    We are flexible...."

    Stay strong and wise. -- M

  8. What you did today was brave. Such relentlessness in keeping up with everything. Hope it helps.

  9. I'm so glad for you that she could do this without hospitalization ...... I remember an earlier post about a year ago and it was going to be like leaving your baby in Bedlam.

    Now for the experts and their little black box .... it's hard to trust experts these days - but we will

  10. miss you. so much.

    i'm going to hold 'brain in a box' in my mind tonight, sending out visions of answers returning to you. a long-range synaptic connection.


  11. what a good girl, to put up with that. i hope you get something helpful out of this.

  12. Oh, wow. I hope you get good information.

  13. Didn't know doing this at home was possible. Hope you get some helpful data.

  14. Thats cool you didnt have to stay in the hospital. that glue is so hard to get out!! hope you get helpful info. keep us posted :)

  15. How wonderful the use that cap rather than the old glue technique. Even though my son had short hair, I spent weeks combing glue out of his hair after each long-term EEG.

    And "ambulatory" is a blessing, too.

    Blessings for the next part of this journey.



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