Just another day at Gillette

Mira is doing beautifully, but there is no rush to send her home, largely because she was home less than a week after her last discharge before ending up hospitalized again. She's fully on room air again, even when laying on her non-preferred side. She lost her IV yesterday afternoon, and they were unsuccessful in getting a new one in in a vein that was sturdy enough to handle the corrosive antibiotic they had been giving her. Our options were to sedate her to put in a PICC line or to cautiously switch to an antibiotic that can be given via her g-tube. There wasn't anyone who really wanted to go through what it would entail to sedate her, so we went with the less invasive route and so far have been okay.

Last night her temp dropped again, so warm blankets were in order, but she responded very well, and steadily came back up to a good temp over the next few hours.

The respiratory care nurse took this photo for me last night as we had Mira all snuggled up trying to get her warmed up again. It's funny, as I look at the picture this morning, my mind snapped back to a year ago when one of my concerns about adopting Mira is that I would not like the way she smelled. I know that sounds like a really stupid thing, but it was something that would periodically run through my mind. Oh, what a non-issue that has been! Yes, particularly before her dental surgery, she DID have a rather unpleasant odor, but as you can see from the photo above, it's just not something that we even think about in our daily life. What an honor it is to get to be the one who gets to be close to this precious girl!

We got good news, too, related to her discharge, which is not yet on the table as a real topic. Mira's been scheduled for tomorrow to have her first of two eight-hour-long appointments with the seating specialist to custom form her seat insert for her new wheelchair. Even though that's a Gillette appointment, it's at a different location than the hospital, and we were disappointed to have to cancel the appointment if she was not discharged today. We're obviously excited for her to keep moving toward having her new chair, partly because of how beneficial it will be for her lung health to be able to spend more time vertical! And healthier lungs means, hopefully, fewer hospitalizations! This morning our nurse called over to the man who will be doing the chair fitting, and Ta DA!! he can do the appointment here at the hospital location! So we will get the best of both worlds: Mira can stay inpatient for one more day without having to miss her appointment. And because we knew about tomorrow's eight hour appointment in advance, I already have some help with the kids lined up!

Our home school year is fizzling out in a puff of smoke rather than ending on a strong finish. We already knew that this second half of the year since the girls came home was going to be quite scattered, and it fully lived up to those expectations, but right before Mira's stay two weeks ago, we were *just* starting to get back into a decent routine and starting to find and tie up some of the loose ends that had fallen to the wayside, and now I don't even know what we're going to count as our official last day of school, which is, by the way, a very important event because we celebrate with a trip to a local donut shop, and that's a pretty big deal!!!

Every day like this that doesn't go according to [my] plan is a reminder to me that even in these times of waiting there is still work for me to do. My job is not to just hold tight and wait until things are back to "normal" and to then get on with life but to recognize that this is what God has designed for right now, and so right here in the midst of abnormal is where I am expected to live in full obedience to him! This day, right here, is where I need to be right now.