The requested "little update"

 To my dear "Unknown" blog reader who is periodically, politely, and patiently requesting an update, here's an attempt at just that!

I'll begin with Krassimir - Krassi continues to excel at contentedly managing his time. He continues to live an extremely limited life due to his physical and cognitive disabilities, BUT he has the incredible skill of being satisfied with what he CAN do. He's still a generally happy guy, and though he generally spends his time on the floor of Mira's room/the computer room (centrally located, close to the toy shelf, and a big-ish open floor), he will some days decide to spend stretches of time in the upholstered chair in the dining room (he can climb up into it by himself and down out of it.) He'll drag a few choice toys of the day with him, and sit there happily for hours. Some days he pulls himself out to the living room, and some days he still likes to get himself down to the basement and play there. (But we had some water damage this spring when the GFCI on the sump pump went out...so it's a bit of a mess as we're replacing the bottom 8" of insulation and drywall!)

I think I've posted about this before, but I continue to be delighted with the variety within a theme of the toys he selects. He still loves rings and triangles, and squishy animal toys of the right size.

Four rings and a squishy pig. Do you love how pleased he is that I'm taking a photo of his creation? :)

Four rolls of duct tape up his arm!

I love this one because you can see his thought process. This is very typical - he starts the day making his selection, and then that's the one he'll drag around all the rest of the day. On this particular day he's got a squishy lamb inside of a square "ring" inside of a larger ring on top of a squishy circle. The horse and three rolls of duct tape didn't make the cut on this particular day.

Today we've got TWO rolls of duct tape, each with a squishy farm animal inside, as well as a donut patterned scrunchie Rinnah made for him. (She made donut pajama pants or shorts for everyone in the family that wears pajama pants, but then used the same fabric to make a scrunchie for Krassi's wrist, a lap blanket for Mira, and she backed a blue satin blanket for Reuben, as none of them wear typical pajama pants.)

This one makes me laugh. The ring of choice is a dog chew toy that we got him for his birthday one year. He loves it. A stuffed ferret is the squishy animal, and they're riding on top of one of Eben's monster trucks!

Krassi stacked this himself. He was really proud of getting five up there! Because you can't tell by looking, I'll let you know that both the bottom blue block and the yellow one count as "rings" in Krassi's world because they have holes in the center that squishy animals (or triangles) can go into. Here you can also see the green foam triangle that is one of his favorites.

I've been collecting these photos of his assemblages regularly since 2021, though I have a photo from as far back as 2017 with a similar theme. They are a great example of his distinct preferences, as well as his creativity, and his categorization skills. Rings, triangles, and squishy animals are his thing, but the vast range of combinations he can make, and the deliberate way he goes about choosing them is truly delightful. On the one hand, it doesn't seem like much of a life for a 20 year old, but on the other hand, he's content in it, and takes pride in his work! What more could you ask? 

Next up is Tsvetomira. Tsvetomira continues to spend her days working hard at breathing, digesting, and voiding. We had a few years of kind of a sweet spot, but over the last year, have been chasing just general unrest in her that cycles on and off a few days at a time. Last fall she had three separate week long hospital stays, over the course of which they tried all sorts of things - antibiotics for an ear infection (no results), x-rays of every bone in her body to rule out something broken that might be causing pain (everything looked good), etc, etc. They finally did a contrast study of her G-I tract over the third stay and found a small ulcer in her esophagus. That almost overnight resulted in a long stretch of being "good." We continue to treat with an antacid - quite benign compared to some of her other meds. But the last few weeks she's been cycling through days of just not being settled, and no good way of figuring out what it is that's bugging her. We're currently doing steady visits with her (fantastic) complex care doctor at Gillette every 4-6 weeks just to stay on top of things and try a few ideas. Keeping her comfortable is one of our major goals for Mira.

I still don't see any indication whatsoever that she can distinguish me or Matt or any of her siblings from anyone else. But what matters more to us is that she is surrounded by people who touch and care for her gently. She may not know that it's mommy who's touching her, but she notices that *someone* provides a gentle touch when she cries, even when we can't figure out anything to do about it.

Here she is with the donut lap blanket that provides cover and a buffer between her and her lap belt when she's in her chair. Notice the tight, uncomfortable way she's holding herself. :( While we do have many days when she's peaceful and looks at ease, we also get plenty of these looks. It's just hard work being Mira!

We still see her heart rate vacillating from as low as 38 (and then her body temperature tanks!) to as high as the 150s or 160s, often all in a day. She's always had a hard time regulating her body temperature, but seems to be having increasing trouble with it. Keeping her warm is a constant task. Except in the summer when it gets really hot, and then we have to take active steps to cool her down. We call her our little reptile!

And then Bogomila. Honestly, Bobbi is probably the biggest reason that I stopped blogging regularly. :) My desire with this blog was, among other things, to be able to recount the challenges and joys of adoption, and particularly the adoption of children with special needs, and to have an account of God's faithfulness through all of it. Because of Bobbi's significantly higher cognitive and developmental abilities as compared to Krassimir and Tsvetomira, the challenges, in particular, were not things we thought were things we needed to broadcast across the internet! And yet, ONLY describing the joys would provide a very incomplete, one-sided picture. So out of respect for Bobbi, we went quiet. :) So, knowing that I'm going to give you an incomplete one-sided picture - the "Christmas card" version, so to speak ;) - here's a lovely update of all the really good things going on in Bobbi's life!

Where to start? Because there's a lot more going on in her life than Krassi or Mira's! Well, she's still got the job that she began in the fall of 2020. When she first started, she was still in her transitional program with the school district, so was only working 9 hours a week. After she graduated, she had the opportunity to go up to 20 hours - a big increase - and she went for it, and has done really well. While she used to struggle with a 3 hour shift, she now has 5+ hour shifts that she pushes through even when she's sleepy. She has many regulars who know her work schedule, and come in every week (or more than once a week!) mostly just to talk with Bobbi. She gets along really well with her co-workers, and has a handful who are above-and-beyond helpful when the occasional situation arises when she needs that kind of extra help. She was just tickled to find out this week that her new-ish manager shares a birthday with her! Birthdays are a big deal in Bobbi's world, so for him to have HER birthday is a really big deal (though she's also confessed to me that she's a *little* jealous that it's not just her day anymore!)

She just wrapped up the first phase (took about 8 months) of something called "customized employment." They work with people with disabilities who have employable skills, but not necessarily the kind of skills and abilities that can easily find jobs through regular job postings. This first phase was the "discovery" phase, where her worker spent time getting to know her, interviewing people who know her, watching her do a variety of tasks, arranged a number of volunteer opportunities to observe her doing a range of different tasks, and ended with putting together a visual resume and a list of potential employers. The next phase, which we have not started yet, involves a different worker contacting her/our top choices on those lists, and working together to create a job description and position that meets their needs and Bobbi's abilities. She's really hoping to work for Delta and get airline miles as part of a dream to visit Bulgaria again sometime. We're just excited that she *wants* to get another job (she plans to also stay at Kwik Trip) and excited for her to push herself in this way and have more chances to get out of the house! We expect maybe by Christmas we'll have something to show for this long process.

Bobbi continues to steadily produce beautiful things with her colored pencils. She finds line drawings on the internet for me to print out, and then gets to work. She was also able to use her skills to color some half-size sheets for "Ten Plagues Bingo" game for vacation Bible school at our church. The woman who heads it all up was really pleased with how nice they look! Here are two recent examples of her work:

Lovely colors and a good example of her use of shadows and highlights

This is from a coloring book she got for Christmas. Again, the colors she uses are just beautiful and almost seem to glow and sparkle with light and depth.

She and I also just recently finished a project we'd been working on together for a long time - a quilt! It was kind of Dad's idea: a pixelated black and white version of her favorite Turkish music artist. We worked on it every Thursday night (a good reason to get her out of her room and interacting with me!) I did the cutting and sewing, and her job was to follow the chart I'd created, and tell me how many of each color pixels (9 colors ranging from white to black with seven shades between) in a row I needed to accurately create each column. We checked and double checked, and I only had to take out a few seams. She picked out a really fun bright fabric for the back, and we had a bit of a routine where every evening when we wrapped up our work, she had Leah use her dramatic flair to read a few of the phrases out loud. Bobbi laughs every time. :) I don't have a good picture of it currently, but will try to get one. Right now it's in a box waiting to get entered in the county fair next week!

She's also slowly added a handful of household chores to her routine. We now keep a bin for dirty towels in the bathroom instead of tossing them down the clothes chute with the other dirty laundry, and it's her job to 1) tell us when a load is ready to be washed (so we can carry the towels to the laundry room and fill the soap dispenser) 2) load the towels into the washer and start the machine, and 3) fold the towels after I've dried them and put them out in the living room at the project table. She's also started helping with the supper dishes. We do not have an automatic dishwasher, so the kids cycle through doing the washing three times a day. Bobbi is not able to do everything, but she does the (melamine) plates, (plastic) cups, and silverware, and usually a handful of other not-too-big-or-breakable items. One of the rest of us finishes up. Again, having these small, but routine and necessary tasks that she can do is so good. We regularly talk with our children about how work is what we as humans were created for. Work itself is not a curse - it's the futility of work that is. (We garden. Canadian thistles, anyone??? The more you dig, the more they grow - I feel like I'm fighting a hydra on steriods! That's futility!) All of the children know that this crazy house only works when we each pitch in our part. (Even Krassi is expected to put his toys away at the end of the day...and does it!)

Last thing I should probably mention, and I *might* blog about more regularly because it's fairly benign ;) and it's as good a place as any to keep a log of it, is that we're finally in a few weeks here beginning construction on what should be the final building project! We're tearing off the old garage (built without foundations and slowly sinking) and replacing it with a new garage (with foundations) AND....it will have an indoor ramp!!!...we are so ready to be able to get people in and out of the house single-handedly instead of needing to one- or two-person carry them in around a tight corner and up two stairs!