Sunday, April 3, 2016

Outings + Openers

This week went by in the blink of an eye. Sarah and I actually went to San Antonio for a gala event at a project that I had worked on for almost 2 years, which was an expansion to the San Antonio Convention Center. It is extremely rare, in fact, this was the first time, that Sarah and I were able both go to an opener, thanks to my office and mostly to our dear friend Tisha, who graciously agreed to watch the kids while we were gone. I cannot thank her enough, knowing it is always a lot of work and even more so when you have your own family to take care of on top of ours. Despite only being gone for 36 hours total, it was nice to get away for an evening and have actual adult conversations that don't revolve around seizures, medications, or therapies. It did rain for part of the day we were there, but the skies loosened up by mid-day and it was dry for the actual gala. We ended up on the balcony of the building where we could see part of downtown San Antonio and for the first time ever, we were able to walk the red carpet like celebrities - it was quite an event for the city and it was awesome to be invited to be a part of it.

Mira did well while we were gone - she hasn't had any major seizures all week (and while we were gone - bonus) and for the most part, has been going with the flow. This weekend she has had her moments of crying, usually in the afternoon, which is typical for her. I have had to stop and start this post several times to try and find her happy place, which usually involves walking outside. We made an attempt at brunch this morning, as Sarah was craving biscuits and gravy, so we packed up the entire family and went out. The weather has been amazing this weekend - in the 60's and sunny, so we saw it as a perfect opportunity to set out on an adventure - the definition of adventure around here these days is constitutes a meal out in public. Mira lasted for about half of brunch - had we not had to wait 30 minutes for a table, she might have gone the distance. Instead, she was fussing off and on, so we picked up the pace when we got are food and finished our meal quickly. 

Mira just does not like to sit still these days, thus we have done a ton of walking this weekend. Both days, we have taken multiple walking excursions around the neighborhood, each outing lasting an hour minimum. Thank goodness for the awesome weather. The excessive drooling and eye-rubbing continues with each walk. I am literally having to wipe her face down every minute we are out. Her jaw is open for a majority of our walks, so the saliva is simply pouring out of the side of her mouth. It isn't like she is sitting still either - her legs and arms are always in motion, while her head is pushing forward with every step. Her eye-rubbing is somewhat isolated and random - on some walks she is constantly trying to get at her eyes, so we end up losing the glasses altogether. Other times, she doesn't touch her face but maybe once or twice the entire time we are out. Speaking of glasses, we did pick up her revised lenses yesterday and the optometrist snapped them into her old frames. Her script was just slightly different than her original and the dispensary agreed to remakes them at no charge, even though CMH forgot to call in the updated script within the 30 day time frame. 
At brunch earlier today, we all managed to get decked out in our Royals gear, as the season opener is happening tonight at the K. I won tickets last year to the home opener (but couldn't go because of travel) but this year I wish I was in the same boat, since they will be doing the ring ceremony - you know, after winning the World Series last year! How time flies - seems like all of that happened just last week. I'm not sure Mira is going to stay up for the game, but we will see how it goes.

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