On Tsvetomira

Skimming back over the last few posts, I realize there hasn't been much about little Mira! Partly that's because there isn't that much variety to her days, and partly it's because the last month has been really tough with Reuben's seizure activity, and I don't always have the brain power to post more than something "easy."

So here's Mira.

See that little smile on her face? We often get that look when she's getting her Vest treatments, but it sometimes peeks out at other times, too. Girly's hair keeps growing. We haven't decided yet what's going to be the best way to keep it. Too long, obviously, will be difficult to keep up, and uncomfortable for her, but it's so pretty - golden and wavy - and we want to find the best way to show it off, and know that we still want it just a little longer so we can sweep it out of her eyes. Right now it's at that awkward stage where it's too long to hang nicely (especially with how very small her forehead is because of the degree of missing brain matter to fill up her skull!), but not quite long enough to reliably stay pulled off to the side without constant attention.

One of my favorite things when we're all going somewhere together, is when I look over and see Daddy pulling the spray bottle of water and a comb and barrette out of the "Mira essentials" bag and make his little girl all pretty when putting her into her chair after laying down in the van for the drive.

Just today we started using atropine drops which help to dry out her mouth a bit. She has such prolific secretions and such difficulty handling them, that we are constantly battling the drool. Because she does not eat by mouth, she does not need the saliva to help her chew and swallow, and because the drops are quite localized in their effect, there are not the same concerns about systemic dryness like would be associated with a medication delivered via g-tube. We can just use the drops when we need to, and today's first run seems to have been a success!

Mira continues to be adored by her younger sisters, and it's been sweet to see Krassimir growing in his awareness of her, too. If he sees one of her things (pillow or drool cloth) laying around on the floor, he brings it over and puts it on top of her. Yes, it's possible that it's just the thrill of being very near to her cushion, which is a tremendous temptation for him, but something that is off-limits (we can't have him pulling it out from under her!) but we prefer to think that he's finding his own way of being her big brother.

We continue to see occasional episodes of dystonia, but much less significant than we did at the beginning, and still do not think we have witnessed any actual seizure activity. Crazy. ;)

Mira has also continued to pile on the weight, and after a mild cut-back in her daily intake in June, our last meeting with her complex care doctor and dietician resulted in another more significant decrease in what we're feeding her every day. Matt and I are pretty happy with the current status quo. She obviously needs more weight than she had when she first came home!

In Sofia on our pick up trip

During her first hospital stay upon arriving in the US

But she also doesn't need to get too big. Our job is to help her find her "just right" - sturdy and with the reserves she needs to fight when she gets sick, but not to the point that we're putting undue stress on other organs. She's spending a lot of her time looking very relaxed and comfortable lately, and that is a good sign that we're in a good place.

Managing her bowels continues to be our biggest challenge. Her neurologic deficits make the normal "movements" a very difficult thing, often triggering some mild disautonomic storms. We are dancing the fine line between too much miralax and senna oil and having stool that runs all over and having not quite enough and seeing her in great distress to move things through. It is a very delicate balance, and we still don't have it fully figured out yet.

Maintaining a stable body temperature is also a challenge for Mira. She regularly swings throughout the day from a high around 99 down to a low around 95, and sometimes the range is greater. We've just started monitoring this more regularly, and it's amazing to watch it swing.

Last night she was agitated trying to move some things into her diaper, so I picked her up and held her on my lap during the second half of our Bible study. She loves that, and it calms her right down. Leah still regularly asks to hold her for a while after supper, and gently combs and strokes her hair while she snuggles her close. Even though she still spends much of the day laying on her cushion, her days are regularly punctuated with these kinds of human interactions that she responds to so well. We're so glad she's not alone anymore.