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Earth to Joy

January 4, 2012

I’ve debated all day whether to post these pictures because I don’t want scare anyone.

So read this up front: Joy is fine! She just looks like she’s been up all night because she was.

This morning, after being awake from 2:00 AM on, Joy had a sleep-deprived video EEG at Gillette to see if the computer could catch what may be absence seizures. If Joy is having them, she has had them for as long as we have known her so there is no emergency. Rather, her growing ability to talk highlights what we’ve always known: she has moments every day where she appears to be lost in thought gazing at the ceiling and takes a long time to respond. (We call these “Earth to Joy” moments.) Other times her responses are crisp and fast.

This could simply be a feature of her prematurity and cerebral palsy (as we’ve thought up to now). Or maybe, as is common in kids with quadriplegia, Joy  has a mild form of epilepsy.

This morning’s EEG was not conclusive so we’ll be following up with a 24-hour EEG in March.

In the mean time, I couldn’t help but notice with her head swathed in gauze, how much she looks like her twin sister Amy. Some of the last photos on Amy’s sister’s blog  (before she switched to updating us on Facebook) show Amy after surgery in Korea to replace her shunt last spring.

Joy’s opinion of the morning? She was surprisingly cooperative except that those who know her dislike of pony tails, barrets, or glasses on her head can guess what she thought of electrodes and wires in her hair :).

The gauze kept the electrodes safe from her fingers. “Hat on,” she observed as the nurse wound the turban.

Then once it was wound and secured beneath her chin, she changed her opinion to, “Want hat OFF!”

For the record: at 4.75  years, Joy weighs 26.5 lbs. (12 kg) and is 37.25 inches (94.6 cm) tall.

2 Comments leave one →
  1. January 5, 2012 12:00 am

    After three “normal” 24-hour sleep-deprived EEGs, the only way my son’s absent seizures were detected was by doing a 24-hour video EEG where we spent three and a half days in the hospital. I hope you can get some answers soon!

    • January 5, 2012 3:39 pm

      Cassandra, I’m glad you persisted for your son! Joy’s episodes are frequent enough that I think there is a reasonable chance we’ll catch one or more in 24 hours –if whatever it is shows up on EEG. I hope that is true because three and a half days is a long time to stay wired!

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