An 8-day 24-hour stay

 We've got our Mira back home. Crazy girl went and had a really bad nose bleed Sunday evening (which, if you may remember, is what triggered the pneumonia that ended her up in the PICU for a month three years ago). SO FAR her lungs seem okay. The fact that she's already on serious antibiotics for her UTI, and one of them is one that is also used for pneumonias has probably given her a head start on fighting off anything that may have gotten in there.

Matt and I both got to go down yesterday for a short visit, and I snapped two pictures that were meaningful to me:

First, notice how nicely her fingernails look with her hospital gown. Her home nurse did her nails a few days before she ended up in the hospital, and the color is just perfect.

Second, notice how pretty her hair looks. When Matt and I were down there Monday, her nurse was in the middle of rebraiding her hair.

I know I've mentioned this before, but toward the end of our pick up week in Bulgaria over four years ago, Toni, our adoption lawyer on the Bulgarian side of things, called me at the hotel and said, regarding Mira, that she didn't care what milestones Mira made or didn't make, she just wanted me to make sure her hair was pretty. I still think it's pretty fantastic that her nurses at Gillette have a similar frame of mind, such that taking time to braid their patients' hair is important enough that they're 1) interested in doing it 2) actually do it and 3) are allowed to take the time to do it.

One of our referral photos for Mira, taken in early 2016, I believe. Her hair doesn't look as cared for in this photo!

Mira can't tell time

 

On day six of her "24-hour observation" visit to the hospital. Someone's got to teach this girl how time works!

We took her in last Monday to the Quick-Care Clinic, and they diagnosed a UTI, as we expected based on the few little symptoms she was manifesting (smelly urine, and when we checked her temp Monday morning, it was 98.3. Mira's our little "reptile" who can't maintain her own body temp, so to see her on the low side of normal without intervention means, well, something.) After sending her home with the expectation that we'd pick up an antibiotic later in the day once it was prescribed, her doctor actually called back asking if we could bring her in, as the antibiotic he wanted to start her on was just closely enough related to one of the two that triggered her huge anaphylactic response in the ER a few years ago (we still don't know which of the two it was, the *other* is the more likely to trigger a reaction, but she'd been on it for an hour before she started the second, and five minutes later was when her reaction hit) that he didn't want her to start it at home.

So I brought her down, and they ended up starting her on a *different* antibiotic, but still, essentially symptomless, the idea was to bring her home the next day. Except routine base-line blood work revealed all sorts of unusual (even for Mira) levels, so they've been chasing a variety of things since. Most likely, it appears that the infection had spread into at least one of her kidneys.

The above photo was during my visit with her this afternoon. Still not quite sure why they've got her on oxygen. There's no reason why her oxygen saturation levels should be low due to a UTI. But that's Mira for you.

Please notice, in honor of Toni (our Bulgarian adoption lawyer), how prettily Mira's hair looks in those delicate french braids! I am glad that the nurses at Gillette think that taking time to do patients' hair is an important thing to do. She is in such good hands when she is there.

As promised, more of Krassi's creations

 I just love these, and it's been fun to collect them, too, because Krassi is so proud to share them with me!

A lamb IN a ring in a ring!

This one he put right into my lap! :)

The "look away" is a protective mechanism from the institutional days that still manifests itself on a regular basis. :(

But he's still getting better and better and better at looking.

See how proud he is to share what he's doing? :)

A slightly different version....

Found late at night after all the kids were in bed!

Another double - sheep in two wedgits in the background and a cow in the green in the foreground.

He has a hard time holding them still enough for the camera as he holds them up to show me!

Krassi's collections

 I've written here and there about how Krassi just goes contentedly about his business every day, but over the last few weeks have been collecting some photographic evidence of what most of that business actually is. I'm hoping to expand the collection as time goes on, too.

Anyone who knows Krassi knows that he loves "rings" - bracelets, things that he can put his hand/arm through. As he's gotten older and bigger, things that he used to be able to put his hand through don't work anymore, and he's adapted in an interesting way. He also really has a thing for triangles. I can't explain that one for you! (Honestly, I think the arm/hand through a ring thing has a simple explanation, which is related to familiarity/self-stimming behaviors arising from years of putting his hand and arm through the bars of his crib. So it's fascinating to see him developing beyond that - not abandoning it necessarily, but broadening the experience.)

Behold - Krassimir's daily activity of choice for at least the last year, and possibly even longer if my memory is correct:

I chose this example as the first because it's such a classic example. Notice the critical elements: a toy with a hole in it - a ring/bracelet of sorts (bonus that it's a foam block, one of his favorite things for all of his years at home) - with a wooden triangle block inside of the ring.

Here's another:

This time it's a blue "wedgit" (just what it's called), with a green triangular foam block through it.

Followed by a used-up roll of tape with a wooden triangle inside:

And then the blue wedgit again, but this time with a squishy lamb inside. The squishy animals were a classroom present when he graduated from 8th grade. They were so loved by him that his teacher let him keep them at the end of the year! (You'll see them again - they make great triangle substitutes...)

Here we have a roll of duct tape with a wooden triangle inside. (You can see a red wedgit in the background, waiting.)

And this doozy, which is the green duct tape with the squishy lamb on top of a glitter bottle!

And this time, the red wedgit with three wooden triangle blocks.

See - there's three! (I just realized that in EVERY single picture he's wearing the same sweatshirt. Don't be fooled - the photos are from five different days - it's just the warmest shirt he's got, so apparently he wears it a lot!)

And then the squishy lamb in the yellow duct tape, with the squishy cow watching from the background.

There - this is another shot of the one I showed nearer the top, but you can see that he's wearing something else AND you get a view of squishy pig!

What I find so fascinating about all of these is the degree of categorizing and specificity that this young man has developed. He has distinct preferences, and yet the incredible ability to combine the pieces in seemingly limitless ways. For a person with a profound intellectual disability, there's actually an incredible degree of creativity and ingenuity that he displays as well as a skill that many people (with a whole range of intellectual abilities) lack - the ability to find satisfaction and contentment in his daily "work." There's a lot to be admired in that!

One more anniversary

Yesterday marked four years since the girls landed on US soil and came home for the first time. In past years, we've celebrated with Bobbi's choice of dinner and dessert, but this year what she wanted to do was go shopping with me at Goodwill! :) Done.

Even without the benefit of changing rooms, she came home with two pairs of cool jeans, and four shirts, of which only ONE item needs to go back because it doesn't fit quite right! She's enjoying the benefits of having a job with regular income. 

I remember our first trip to Goodwill after she came home, during which she picked out four hoodie sweatshirts. That was a HARD shopping trip! We were still heavily dependent on google translate...and Goodwill does not have free wi-fi and we don't have data on our phones, so we were working without any assistance! She's since passed on all four of the shirts she picked out that day - the MN Vikings one because she hates football (and hated people asking her about it!) and the one from a neighboring high school (which also raised conversation-starter questions that she didn't want to field: "No, I don't go to Hastings, and don't know anyone who does!") and the green one that she loved is just a little bit too small. 

Four years with those girls. For Bobbi, she's now spent 20% of her life with her family. We've got a long way to go to even break even! But every day, month, year keeps building, and today it was fun to hear her, after we picked her up from work, say she was looking forward to spending the evening at "home sweet home." Granted, she was in a bit of a goofy mood, but it was still delightful to hear those words come out of her mouth!

We picked out ice cream in Mira's honor, so we still had a special treat. :)

Finally resting peacefully after a 2 hour run with heart rate in the 150s and two doses of valium to help her calm down

It doesn't quite work that way...

 Bobbi and I have a nightly routine where I go in and spend about 20-30 minutes with her talking or listening to whatever music she wants to show me, or whatever before she goes to bed. Her sweetest-of-the-sweet kitten, Tihomir, almost always joins us. As we were talking about his sweetness, she goes, "I chose you, Babe - you have to be thankful!"

I teased her back a bit - "So, Bobbi, is that how it works? We chose you, Babe. So you have to be thankful!" We can tease a bit like this when she's in the right mood, and we take every opportunity we have to reiterate our own gratefulness that we did choose her, but it's funny how embedded that notion is, in children's literature, for example (as an adoptive parent, I now read any story that involves orphans or adoption a whole lot differently than I used to!), but even in the default thoughts of someone who knows better, personally!  It just doesn't quite work that way - it isn't that simple!

Adoption, while a beautiful echo of God's own choosing of his people and his bringing them into his own family, is also a story that is born out of something seriously broken, and while that single act of choosing, yes, does change everything, it also only has its meaning in the continuous day-in and day-out living out of that choosing in the same way that a wedding is only a single point from which a marriage grows and develops.

But, to bring it back, we're sure thankful that Tiho is part of our household! He really is one of the sweetest, most gentle-natured cats that we've had.

Although this photo is from back in Sept, I get a kick out of how much Tiho likes to sit in Krassi's eating chair, even with that big adductor pommel in the way!

Gloria holding the sweet baby

He adores all kind of petting - even on his tummy!

And a more recent one of him in Krassi's eating chair. Pretty funny.

A few bits on Krassi

This guy has settled into such a great guy who I really enjoy having around the house. It's so interesting to watch him every day - he's got plans in his head, and he goes about accomplishing them! They're very different from the plans a typical 16 year old boy may have, but they're his, and he takes ownership of them and lives them out to their fullest.

Today Owen and I took him to his PT session, without any other helpers, so we were able to take Owen's truck. (Less than two weeks until Owen takes his driving test!!! Oh, how I hope hope hope he'll pass on the first try! I am SO ready to have another driver in the house!!!)

It's maybe not the best photo, but I loved having both of my teenage sons in Owen's 23 year old truck this morning!

We've had the swing up in the basement again lately, and Krassi, with his increased strength, is able to climb onto it if there's someone else on it to steady it for him as he pushes up. These two were having a blast last week when I popped down to check on things!

There are many exciting things on the horizon for Krassimir, too. He's started taking a more active role on a more regular basis in feeding himself. Currently we load up his spoon for him, modified with a special adaptive handle, and he's responsible for 3-5 of his own bites at each meal. As he's growing, a new chair for him to sit in while he eats is really going to be necessary - he's still using the one a family at our therapy center gave us when he first came home, and he's pushing the limit on size - and we're hoping to be able to get something with an eating surface so he could possibly even learn to do the scooping up of the food himself as well. I'm really excited about this. As I've written about before, when Krassi first came home, he seemed to channel all of his angst and negative emotions about his life into the single act of eating. We're hopeful that being able to take ownership of this necessary daily task with help him to view it in a different light!

While the above photo doesn't demonstrate self-feeding, it does capture a funny moment from lunch today! The thick gray handle is the one Krassi uses, but this time REUBEN wanted to help feed Krassi. Oh my! Much giggling, as Reuben accidentally bumped into Krassi's front teeth at one point, and Krassi laughed, so Reuben tried to do it again, and Krassi was laughing so hard he couldn't close his mouth to get the pudding off the spoon! Had to work hard to convince Reuben that this was NOT a good idea...and missed getting a photo of where Rose is supporting the spoon that Reuben is holding while I'm holding Reuben's elbow to help minimize the chance of bumping and Krassi is holding Reuben's wrist as a tool to self-feed. :P Quite the production! It works better when Krassi does it on his own!

Something else we're considering, though not quite sure what it looks like yet, is moving toward some degree of toilet training for Krassimir. He has much more of an awareness of his bodily functions than Reuben does, and will frequently bring us the wet wipes when his diaper is dirty, showing us that he doesn't really like it, and that's a great motivator to use other means! With the new bathroom, there's room to get him and an adult and perhaps even some sort of *thing* to help (not sure yet what that would be), and it's also possible that with our shorter toilet bowl, he may be able to use the grab bar on the side to pull up to standing, and sit sideways on the bowl where's he's got a good double grip on the bar. The logistics of all this remain to be seen - the bathroom is still a "no-no" room for him after his days of hugging Grandma's toilet so he could lick it from when she still lived in her own home when Krassi first came home. I think "Don't go in the bathroom" was one of the first rules we had for him!!! But that, too, may be a devious sort of motivator for him as well...who knows...but we'll still draw the line at licking. Bleh!

We are also increasingly seeing him using picture cards to make choices of a field of two or three with very consistently meaningful answers. We are cautiously optimistic that we may be able to reach a new level of communication with him at some point in the foreseeable future. When he first came home he demonstrated an amazing capacity for learning to understand spoken English, and that first summer, gained rather quickly the use of two ASL signs (my turn and please) which he kind of morphed into one and the same sign...and that's it. It's been surprisingly useful, but I *know* there's more in that guy! He has opinions about stuff! And we'd love to be able to hear from him proactively, and not just reactively.