Thursday, June 4, 2015

Fuuski, Fuuski, Fuuski + Other News

Mira has been fussy, fussy, fussy today - I think she is really bored. With me traveling part of the week and the constant rain and mud outside, Sarah and the kids have been trapped indoors. Sarah hasn't been able to get Mira outside to go for a walk, use the swing, or do much of anything with the weather not cooperating. The forecast is calling for rain the entire weekend too. Argh.

Sarah managed to get out to run a few errands this afternoon, which got Mira smiling a bit, as did her bath right after dinner. Other than that, Mira has had a frown on her face all day long. We haven't seen too many seizures, other than a host of myoclonics this morning, thus we are chalking it up to her needing a change of scenery.

We followed up with neurology today with trying to get Mira into a whole genome study at the hospital, which they are still working on. Her application went into the queue a few weeks ago, which to reiterate, is only an application to get into the study and no guarantee that she will be accepted. Neurology told us they would get back to us next week when they know more about her application status.

We also informed neurology of our testing of Mira's blood glucose and ketones. Basically, after monitoring her off and on for a few weeks, at random times throughout the day, her levels never were out of range, for blood glucose or ketones. I think that rules out any chance of her having any sort of glycogen storage disease related issue - check that one off the list.

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