Thursday, April 9th

While changing Dallas’s shirt this morning, we noticed that she seemed to do some shifting/stretching. We were not totally sure if it was in reaction to the stimulation, but it continued more, later in the day, as she did some stretching movements with her arms and legs.

She had a round of the cough assist this morning – for the first in about 30 hours. We felt, and the nurses confirmed, that Dallas sounded a bit more “junky” in her respiratory system, so it wouldn’t hurt to give a little hand.

We did see a couple more of her little smiles today, which are so special to us. Seeing that she’s able to start making some expressions – good or bad – is a good step in the right direction. Heather also got some more snuggle time with Dallas, both in the rocking chair and in her bed.

The neuro docs stopped by and feel that Dallas was making small strides in the right direction. They mentioned doing another EEG sometime next week, but unless there is a true need or concern for doing so, we’ll be opting out. One of the things about a “teaching” hospital  – one affiliated with a medical school – is that they LOVE research. Don’t get me wrong, we love research too – especially in the case of an incredibly rare disease – it’s just that she’s not a science experiment, and besides… that EEG glue is the worst!

Not much more to report on today, and Heather is on the night shift – hoping she has a restful evening. That said, I do want to take a moment to recognize the Ronald McDonald House (RMH) here in Chapel Hill. Aside from having a dedicated place to lay our heads on our “off nights“, their volunteers and staff are truly nothing short of amazing. From the family kitchens where we can make meals, the free meal offerings, to the laundry facilities and everything in between, we’re blessed and grateful that this wonderful organization exists. I hope that you never experience a time when you would ever need the RMH, but know that they’ve “got you” if you do.

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