EEG-ness

“Cause it’s been fear that ties me down to everything
But it’s been love, Your love, that cuts the strings…
You make me want to be brave.”
~ Brave, Nichole Nordeman

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In the past few months there’s been concern that Rhema might be having seizures at school.

She suddenly squeezes her eyes tightly shut. She covers her face with her arms as if she cannot tolerate the light. Sometimes she’ll drop and huddle on the floor, immovable. Sometimes, after she’s “snapped out of it”,  she becomes upset and overheated and tries to remove her clothes. At school, her teachers call these episodes “breaks.”

With Rhema, it’s just so hard to know sometimes. Brandon and I have always assumed that these episodes were behavioral – just the latest odd thing in a slew of odd things she does.  For months we’ve gone back and forth, talking with teachers and the school nurse, talking with the staff at Children’s Hospital, video-tapping the episodes. We’re still not sure.

So we scheduled another 24 hr. ambulatory EEG. Sadly, her last EEG was… messy; her brain spiking on average 40 times a minute.

Yesterday my father-in-law went to the hospital with us and helped me hold Rhema down while she got the leads on. Rhema has had more EEGs than I can count since she was two years old. By now she knows the drill, but it is absolutely terrifying , even painful, to her.  

As soon as we enter the room, she is humming nervously and covering her ears.

Asking her to lay still while a stranger messes with her hair, measures and writes all over her head is like asking a teapot of boiling water not to scream. And then we wrap her in sheets and seal her up in a papoose (aka straight jacket.) All she can do is jerk her head back and forth, tears pooling in her huge brown eyes. The cold glue that smells like paint thinner, the texture of the gauze, the loud sound of the suction tool near her ears – it’s a sensory onslaught.

But she handles it well. While her head is being wrapped tighly, she says “Uh oh, uh oh.” She babble-complains, and I kiss her red-hot cheeks.  She calms  herself with a song of words I’ve never heard.

This afternoon we’ll go back to the hospital. Rhema has been so good. She has not tried to rip the leads off her head even once. She kept the backback with a special recorder on all night long, and she slept peacefully!

I’m just proud of my brave girl.

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14 thoughts on “EEG-ness

  1. Oh, sweet girl! We’ve been through too many of those, too. You described it so frightfully well that it made me weep for both our children. For the indignities they suffer and for their immense bravery in the face if the sensory onslaught. Sending hugs and a prayer that the EEG provides insights, answers.

  2. hug her tight for me too. I know that smell, and that jackets, and that backpack too well…hoping for answers for you and that sweet amazing girl of yours.

  3. I really hope something useful comes out of the EEG. Peace and blessings to you all (esp Rhema). Your ability to stay positive through all that this life throws at us is an amazing and inspiring thing to me so thank you for that. I need it!

  4. Mahi Mahi, this is such a vivid picture you paint of what your babe can handle – my goodness – she IS brave. YOU are so brave, too. The things you are able to do in the name of your love for her is just beyond comprehension for most people. I know inside how painful it is to watch your baby struggle – to have to put your little angel through test after test with wires or tubes and bandages and lights and noise – it hurts so deeply. But look how graceful and loving you remain to your baby. through. every. single. trial.

    Bless you. Bless your babe.
    xo

  5. She is so brave and so is her family. I’m thinking of you and sending good thoughts, love and prayers to you. Love.

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