Here and there

All in a big heap, here's some little bits about life around here. [NOTE: this is not a new post - just a re-copied version of the one with the same title - I tried to add a video and somehow deleted the whole thing. Thankfully I had the original up in another browser, and I type fast! So instead of a new post tonight (April 3), you get one 10-second video added to this same old one. But I did start a new post. Now you can watch how many days it takes for me to get it up!]

I have ten minutes - as much time as it takes Matt to give Mira her neb - and then to bed!

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We were up late tonight, as tonight was the night we were invited over for dinner at our new (Bulgarian) friends' house. What an amazing spread!! Two different salads (one Shopska and one which is like the Tarator soup Bogomila has me make, but it's much thicker, so is more like a salad), then stuffed peppers, moussaka, fresh fruit, Bulgarian chocolates and dessert (Swedish almond cake from IKEA! 😃 Because we are in Minnesota, after all). Amazing food, delightful company, and *wonderful* for Bogomila to get to talk for a few hours to people who speak her language...and ours!

But staying up late is hard work. Gloria fell asleep midway through the night in their sons' crib (he's a bit older than she is, and was okay staying up with the older kids), and by the time we got home, Evania was out cold. We set her on the chair while we put the others to bed, and she didn't move a muscle.

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On the topic of sleep, Owen and Krassimir slept in their very own bedroom last night for the first time since late January. The room is not done yet, but Matt took enough time off from his work Friday morning to get Owen's bed platform cut and installed and the last bits of carpet in so Krassi's bed could be moved in.

Leka Nosht, Krassi!

Matt, giving Owen's bed cubby a test run. The light's a little bright when you're laying down! But it should be just right for sitting up and reading.

And Owen, trying it out while getting his covers settled. As you can see, the bookshelves are not in yet, but that can happen AFTER the boys are in the room.

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And with that, Matt's done with her neb, so I'm warpping up and heading to bed!!! Once again, just a simple little post, but getting it done and up takes time, and sometimes there are other things (like sleep!) that I choose to do with my extra time.

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Oh - guess what - Mira just pulled her new bedtime routine of filling a very dirty diaper while being held upright for her neb! (Being vertical is so good for humans.) Which means...a few more minutes before we head up.

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Take a look at that first toenail. Do you think there's been a change in nutrition in Mira's not-so-distant past? There are many good things to say about the changes in her orphanage since the new director began there a few years ago. But even with good changes, as a friend said, the institution has gone from a -50 to a -10. At a most basic level, they are doing the best they can with limited funds, and those limited funds don't allow for the kind of formula that Mira is getting here now through her g-tube. Apparently, the new formula (plus, just maybe, the comfort of living in your own home with your own family who loves you???) is good for her in more ways than just gaining weight.

The above photo was taken during "bath" time for Mira. We are looking forward to getting her bath chair, but in the meantime are still sponge bathing her on her cushion, and putting a very absorbant, adult size diaper under her head for hair washing. Today I had quite a few helpers:

Krassimir was proudly bringing over the pillows that we use for positioning Mira (and which were out of the way on purpose for bathing). He piled both of them onto her back, and smiled like crazy when I thanked him for helping.

Gloria watched me using a q-tip moistened with the foaming cleanser we brought home from Gillette to clean between Mira's toes. She's a quick learner.

Evania was heavily involved as well, helping me squirt out the foaming no-rinse body wash, and combing Mira's hair. Bogomila had wandered out of her room, and was on the floor near us as well, supplying musical entertainment with my phone.

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Being a sibling to a child with special needs is a good thing for many reasons, not the least of which is ample opportunities to practice patience. Mira had an appointment this past Thursday with a new provider - a "complex care" doctor, whose job it is to keep an eye on all of Mira's systems, and coordinate care, so, for example, if she needs ear tubes, she can have it done at the same time as her dental surgery so she only has to go under general anesthesia once instead of twice.

We knew, even with her 8am appointment, that the schedule was going to be tight in getting Bogomila, Krassimir, and Reuben to their 10am therapy appointment. Problem is only Big Blue works for Mira's chair, and the Jetta can take only one at a time of the other two chairs. So, our plan was that just in case I didn't make it back in time with Big Blue, Matt would take Krassi's car seat out of the van to put into the Jetta so the three kids could physically get to the therapy center (with Bogomila's wheelchair in the back), and I could meet them at the center with Krassi's wheelchair if by some chance I didn't get home in time for them all to just take Big Blue.

When the nurse told us (at 8:30!) that Dr. G. usually blocks out two hours for these initial appointments, I decided I'd better give Matt a call so we could devise a Plan C. That ended up meaning that Krassimir made due without his wheelchair for both of his therapy sessions (thankfully they have a variety of seating options at the center), and Matt and his three were at therapy and back before the little girls and I got home.

Putting patience into practice: these three (in the background in the photo above) were absolutely rock stars during this visit! We arrived at 8am, and did not leave the clinic until 11:30am. What you're seeing is the waiting room at the lab - the last stop before we left, so about three hours into the long morning. Gloria hit one point around 10:00 where she was not happy playing on her own OR in Mommy's arms, but to have fifteen minutes of crying from the youngest of the four I had along was very workable.

The funny thing is that even on the days when the little ones *don't* have to come along with me (they can often stay home and play while Daddy works), they prefer to come along. The ability to wait patiently and devise ways to occupy themselves is a skill that should serve them well for the rest of their lives. Might as well learn it early!