One Year Out

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Early morning view of Aurora, Colorado, from our room on the ninth floor of Colorado Children’s Hospital. The room is reflected in the window’s glass. Below the window is a pullout couch that A and I slept on during E’s weeklong stay.

At 1:58 p.m., A informed me that exactly one year has passed since we freaked out on the awful receptionist* at our pediatrician’s office and took E to Colorado Children’s Hospital for infantile spasms.

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EEG monitor showing E’s hypsarrhythmia pattern, aka infantile spasms/West Syndrome.
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Poor little guy finally gets some sleep! Hurray for the Rock ‘n Play.

 

What a mixed year it has been. E still hasn’t had a normal EEG. We have to wait until our new insurance kicks in (or perhaps, MA, depending on what assistance he’s eligible for) to get a new EEG done, and thus get new results. I really wish I could see him progressing more quickly than he is, though he’s still progressing rather than plateauing. And yet? Right now, he is waking up from a nap, and he’s not crying. He is able to sleep. He isn’t jerking or seizing. So I’m feeling all right.

Here’s to a better year ahead — with new challenges and better, closer healthcare options.

 

* Also known as Madame Jerkass Buttafacio, who yoinked me around for two hours by telling me various times when our ped would be coming in. And then confessed, under some duress, that he wasn’t coming in at all because it was a Friday, silly! I have never been so regretful that I had no psychic mindfingers at my call with which to tele-strangle this person. However, I am proud that I did not destroy my innocent and helpful phone despite its adjacency and availability as proxy messenger. GRAAAAAA

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