Thursday, December 15, 2016

Great Stretch, Minus One Bad Day

Mira has been doing great this past week, with the exception of one rough day last Friday, which I will get into later. She has been in a positive mood, with a minimal amount of fussing, which is very odd for her to have such a long stretch of non-irritable days. Mira has been getting up full of energy (and lots of dragon noises) and we haven't been seeing any strong myoclonics in the mornings either. She continues to be surprisingly calm and quiet in the evenings, often taking long naps once she is off the bus and back in her bed. Her appetite has been very consistent - she seems to be enjoying the meal plan we have her on and she certainly appears to be putting on some weight, which is fantastic. Really, the only thing that we seem to be battling these days is the weather. It has been bitterly cold the past week or so, with temperatures hovering in the mid to low teens most days. It's supposed to dip into the single digits over the weekend, which means coming up with some creative things to do indoors. Mira has some super sweet pink mittens, so at least she can be fashionable in the cold.

In terms of her bad day, Mira had a multiple seizure day last Friday, having 2 at school and another one later in the evening. It completely wiped her out last weekend, where she was clammy, rigid, and lethargic (picture above), which is a fairly typical bout of dystonia and/or just being post-ictal from all of the seizure activity. However, those were the only seizures she has had in the past 10 days or so - again, her myoclonics have been negligible and she hasn't had any 'altered' days, other than the one last Friday.

On a side note, our van is slowly falling apart. Mira's side door a few days ago and is unable to fully open, which means we have to switch her car seat to the other side and have Jonah go through the same side. I absolutely detest reinstalling and adjusting Mira's car seat and it always feels like a major undertaking. It has so many attachments and belts, that it ultimately ends up being a 1-2 hour driveway event, at a minimum. Seeing as it's so frigidly cold, I might be trying to pull the van into our tiny single car garage to try and work on it. The door has been malfunctioning over the past week, and combined with the 7 month old battery dying last weekend, the 10 year old van is showing its age. We think all of the power door issues on Mira's side is what is draining the battery, so we will have to get it looked at next week to try and get it resolved. Add it to the list of things we weren't expecting to shell out money for over the holidays.

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