So far you have had an MRI on your brain, a heart ultrasound, two EEGs, several ECGs, and two lumbar punctures. They've taken so much blood that you got anaemic and needed a transfusion. Everything the doctors can think of has been tested, and nothing has yielded a result other than 'normal'.
While we wait for the big guns – an exome sequence, rushed through specially because you are so critically ill – your doctors are proceeding to treat you for Opsoclonus Myoclonus Syndrome (OMS).
Today is the third day you've been on extremely high dose steroids, and the first day in two weeks or so that I feel like you're here with me.
I haven't seen the crazy eyes at all today and you're quite serene.
I definitely think you're responding to this treatment. You're connecting with me.
It's beautiful and heartening, but also frightening because OMS is a life sentence. I can see myself giving up any thought of going back to work and instead devoting my time to home schooling you to protect you from any exposure to infections which might set you off.
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