Tuesday, May 19, 2015

Another Busy Day

Another busy Monday and it was no surprise, because it's the last week of school! Mira's day started off having dozens upon dozens of strong myoclonics this morning, which is par for the course these days. She stayed in a decent mood, despite all of the activity. After she was on the bus, I headed to work and stopped by the endocrinology clinic to pick up a glucometer/ketone testing kit, so that we monitor Mira's glucose and ketones for the next few days.

So far, I am not overly optimistic about my GSD theory, as Mira had two enormous tonic-clonic seizures this afternoon. About an hour later, we tested her blood sugar and ketones. They registered 111mg/dL and 0.2mmol/L, respectively - both well within normal ranges. We will test her again in the morning and monitor her for a few days before we abandon the idea.

We also spoke with Mira's neurologist and he nominated her to be admitted into a whole exome study through the hospital, which is no guarantee she will get in, but it is the first step in the process.

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