Thursday, January 30, 2014

Hair and Spines and Seizures, Oh My!

Donald and I got a laugh out of Elisabeth's hair tonight. It had been in pigtails all day and I took it out before her bath. It looked - well - it looked like this:

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Crazy would be a good way to describe it! Of course, I ran and got my camera to take a quick picture (all I do all day long is snap pictures of Elisabeth and the girls).

Anyways, as I was taking the picture I looked beyond her hair to the reflection in the mirror. Oh that back! That poor, poor back! It is getting so very crooked and so very hunched.

Then I looked at her torso. In addition to the two very visible scars from her VNS surgery, there are four other substantial scars from surgeries past (not visible in this picture) as well as her g-tube button. She's quite a girl! Her body is a testament to her strength and bravery.

Life is not easy for Elisabeth. While her VNS has dramatically reduced her seizures, she still has 3-5 a day. And those are usually pretty strong. This morning I had her all dressed for the bus, coat and all, when a seizures struck. I held her in my arms and whispered Goodnight Moon into her ear as I watched her legs convulsing. When it ended she went limp and fell asleep. I nestled Elisabeth into her beanbag and as the bus pulled up in front of the house I waved it on without her.

I could have sent her. She could have slept at school in the care of her nurse. After all, I needed to go to Costco. But...I had an overwhelming feeling that she needed to stay home with me. I worry lately that I am going to lose her to a seizure. Indeed, sometimes I have nightmares about it. On those nights, when I wake in a panic, I go get Elisabeth from her bed and bring her into mine so I can hold her close. 

I love her.

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[Sleeping off a seizure.]

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