Sunday, March 13, 2016


This weekend has been all over the map. Mira actually had a really positive day yesterday - she was very vocal for some reason, babbling up a storm, loudly at times. Despite being stuck indoors the entire day because of the rain, Mira managed to make the best of it. She was happy and talkative, making her infamous 'dragon' noises repeatedly. The dragon is where she sticks her tongue out and makes this heavy exhaling sound, like a fire-breathing dragon. It is an indication that she is really happy - she typically will make this sound when she finishes a bottle, is happy to be back in her bed, or is just excited overall. I snapped a few pictures of her, as she was doing the dragon multiple times in a row.
In addition to all of the vocalization yesterday, Mira was exercising her abdominal muscles most of the day, by doing lunges and crunches in her chair. She wanted to be in constant motion - again, being trapped indoors made it difficult to keep her entertained, but she was content just racing around, having the flexibility to lunge forward when she wanted. She has her lap belt on of course whenever she is in her chair, but we rarely put her chest piece on, especially when we are just in the house. It is a pain to adjust, as she so often slouches down in her chair, not to mention, it gives her the option to move forward, which she obviously loves to do.
While yesterday was great, today was a bust. Mira just had one of those days where she was not happy just hanging around the house. Thus, we ran some errands this morning just to get out, which Mira quickly tired of, getting really fussy on the drive home. We went for a long walk after lunch, which Mira enjoyed for a bit, but her relentless eye-rubbing forced us to come back in. It was really overcast outside today, so we are still guessing as to why Mira is so adamant and consistent some days about scratching her eyes and other days, she doesn't touch them once. It has to be neurological in nature, as her seizures were nearly non-existent yesterday, but today, she was having a ton of significant startles and lightning jerks. Some of her startle seizures this morning were so severe that she knocked her bottle clear across the floor during one and another, gave me a solid jab to my jaw with her fist. These lightning jerks come from out of nowhere and there is no way to prepare yourself for them. It is really a concern during transfers or when we are putting her glasses on, as she can seriously injure herself if it came at the wrong time.

Not that daylight savings had much to play into this, but Mira basically hit a wall late this this afternoon. By the time we got her out of the shower, she was inconsolable. She was wailing at the top of her lungs and was just plain miserable. Considering she had 2 bottles before bath time, we figured hunger wasn't the issue, yet after a 20-minute cry-a-thon back in her bed, we prepared another 2 bottles. She chugged those back very quickly, but kept on crying afterward. She finally settled down after about 45 minutes after her bath - she was simply done for the day.

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