Second poke

 

The five of us who are 16 and older got our second dose of the Pfizer vaccine today. We're taking our chances that we (me and Matt) won't both feel too icky tomorrow. :) Otherwise Rose is going to have a busy day! Above you can see us waiting the mandatory 15 minutes to make sure we don't pass out!

Gillette purchased and remodeled a dingy old one-level warehouse two blocks from their main campus for a vaccination clinic for their patients and all family caregivers of their patients. One of the nurses there today said, "Oh! You're Mira's family!" She's never actually worked with Mira, but, in her words, "You can't work at Gillette without knowing Mira." I guess I knew that Mira-girl was a big deal, but didn't realize what a big deal she is over there! 

Owen, actually, got to do this outing on his first day out of sixteen days of isolation due to his friend (the one family that he's spent time with over the last year!) getting a postive COVID test. Owen got to come home and go right to his room - we'd already removed Krassimir's things and set up the large pack n play that we use for him when we travel in the playroom in the new basement - and that's where he spent the next sixteen days. Well, there, or on the soccer field - I told him as long as no one else was on the fields he could go outside and kick his ball around. When, a few days later, Owen took a mail-in saliva test and got the positive result the next day, he was glad that he could at least now have his friend that he got it from join him on the soccer field! Owen went through the whole thing with no symptoms. Possibly because he's young and resilient, and possibly because he'd had his first dose of the vaccine already. Anyway, he then had ten days from the test, which ended up falling out to a total of sixteen days of isolation. Not exactly how he'd planned to spend his spring break OR the first two weeks of his new part-time job! But he made it through, and is now good to go. We were sure glad we got him stuck away so soon, because he was isolated before what they consider his "contagious period" (two days before he tested b/c he was asymptomatic) so the rest of us could go about our business as usual.

So that's the excitement around here, lately! (Tomorrow the completed Bobbette shows up - that's some *real* excitement!!)

more about the Bobbette

 Four and a half years ago we took our little family on a trip up north to the North Shore of Lake Superior.

In the background is Split Rock lighthouse. In the foreground is our means for hiking with a non-mobile child.

Perched on a rock

At Gooseberry Falls (which is wheelchair accessible until you get right down by the falls themselves)

...at which point Dad can carry down the rest of the way.

Another method for carrying someone who is not yet mobile!

All of us outside of the hotel we stayed at, which is made from converted railcars!

 

We've been talking seriously for the last year about doing it again, but this time around, it's a little more complex. First of all, Krassi is bigger than he was four and a half years ago, and though we still do the "sack of potatoes" carry with him a lot, it's a little tougher now than it was...and Bobbi doesn't work as well that way! Tsvetomira can stay with Crescent Cove, but we wanted some way to have both Bobbi and Krassi be able to be involved with the active parts of our days if we made the effort to take a family trip!

So, we researched, and found this, which is pretty much amazing in pretty much every way: the Joelette.

But the price tag was a little (significantly!) steep for us, particularly because although we have three kids who could potentially use it (Bobbi, Krassi, and likely Reuben some day, too), it's not like we go hiking every weekend!! So, we thought, can we rent it from someone? Nope - closest we could find is in Colorado, and just wasn't feasible.

So, we researched some more and found this, which is not as amazing: (link here). But it has a much more accessible price tag. But would it be worth it for the cost? No foot rest, and, more significantly, would really require ALL carrying, and not have the benefit of the wheel to roll along and support weight during easier/smoother stretches of the hike.

Months passed, and then we remembered that we knew someone (distantly) who makes custom bicycles!!! So we thought, why not? We sent him an email asking if he thought he could rig something up with the more important features of the really nice vehicle with a price tag more reminiscent of the not so nice vehicle, and he said...yes!!!

His family passed through the Cities on their way to Wisconsin last week and left the in-process "Bobbette" as they've named it, with us to try out so he can make any last adjustments before powder coating it (in Bobbi's color of choice - espresso - like her beloved coffee!!)

It works SO WELL. It's so well balanced that when you're just running it along on the ground, both the front and the back person feel like the other must be doing all of the work because it's so easy to work with. He's got a great cushion incorporated in as well as a nice secure harness. The footrest needs a bit of adjustment, but otherwise, we can't really think of anything that needs to change! It's so perfect! (And he managed to figure out a way to get it to fold down small, which was a feature we said we didn't need to have, but because it DOES fold, we can take it in the back of Big Blue without needing to hook up the trailer or take Owen's pick up truck!)

It's so easy to use that even Rinnah is sufficient to be the front "sherpa" when we're going on fairly straightforward terrain.

Here we are this past weekend down by the Mississippi River at a hiking spot (Pike Island) we've enjoyed in the past...but not ever with Bobbi! We paused a bit to throw rocks, so Matt's just holding it on his own. There's an option to flip the wheel back so it can sit stable on four legs when we're stopping for any length of time, but it wasn't worth doing for this short pause.

Set up and take down is pretty quick.

We managed to do a lift over some driftwood at the shore, and even to go up a rough cut flight of stairs. There are two mini-handles on either side of the chair, too, so if we needed to we could easily have four (or up to six, if each person took one handle) people to lift and move if/when the terrain requires.

North Shore, here we come! We have reservations at the same hotel for the first week of June, and we're really looking forward to an adventure. We're bringing Rose and her husband along, as well as our adult niece (and her two-year-old) to stay with Grandma who can't really be left alone anymore, and the girls' best friend, Hope, who we consider to be our seventh daughter. And probably our nephew (Owen and Krassi's age), because even though he's not really into hiking, he and Owen will enjoy the time together, and we've got the rest of the family anyway! (The two of them are our kids' only cousins on Matt's side.)

Go ahead and check out Randy's web page (click on his logo below for the link) - he's the one creating and fashioning the Bobbette for us!

meet the Bobbette...

 

...our new (in process) all-terrain hiking machine!

I'm not up to typing more now, but we're so excited about this that I wanted to share a little taste with you, and will get you the rest of the story soon...(er or later).

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!