More siding and the dump trailer

First off, MIRA HAD HER SURGERY!! Fourth time scheduled, but she managed to make it without being hospitalized for illness, and we're past it! So far it seems to have been a VERY good thing.

On the garage front, the past week and a half has again shown a little progress. Owen was able to get his dump trailer from work over here, so we took the opportunity to fill it (which is how we've been getting rid of stuff instead of having to fill a huge dumpster all at once!) It was kind of fun at the end of this day to see that the only photos I had taken were of my boys carrying heavy things. First, we have Ebenezer dragging this big old part of an old swing set...

...and then Matt and Owen carrying what was left of Matt's grandparents' clothes line which had to be taken down to make room for the garage - the plug of concrete buried deep in the ground was HEAVY!! The two men were able to carry it from the side yard to the dumpster, and I was able to grab a photo before helping them lift it up and in.

Then we were back to siding. Matt and I got the east side of the front entry finished, and Owen came up from his room to the sound of the nail gun, and climbed up on the roof to help finish the part above the cantiliever, which let me and Reuben run some errands!

AND, Matt had time to finally start putting some of the old siding back onto the original house as well! 

It's not rapid progress, but every little bit gets us closer to done, and being able to do it by ourselves is WAY more cost effective than paying someone to do it!

A few weeks ago I started reading this blog out loud to the youngest four children, starting at the beginning. One of the reasons I wrote it was to communicate with all of you, but the other big reason I laid out in the beginning was so that *we* would have a record of God's faithfulness to look back on in the future. 

From Psalm 77:12-13 "I will remember the deeds of the Lord; yes, I will remember your wonders of old. I will ponder all your work and meditate on your mighty deeds." It's good for us to spend time reflecting on all he has done, big and small!

The youngest three were all born AFTER our first adoption and the big addition, and Evania and Gloria were both too young to remember any time before Bobbi and Mira came home, so although all of this is *their* history, they're not aware of any of it, and I'm excited to share it with them.

I was briefly mentioning this to Gavin one evening, and recounting how the blog is a story, among other things, of God's marvelous provision of what we need to do the work he has set before us, but how sometimes one way he provides is by making things take longer than we think they ought to take. He jumped on that one immediately, recognizing God's design to build patience in us as we wait on him, and we are absolutely seeing that in this building project as well. And part of patience is learning to rejoice in all of the little victories along the way! 

Back in the hospital

 

I don't have a picture of Mira, but here's her empty bed, because she's back in the hospital AGAIN. Starting right around Christmas, Mira's been just not great. She was in the hospital for a week or so at that point, but not with a clear diagnosis.

She's been set to have a surgical procedure for a salivary gland ligation (basically stopping her from producing as much saliva because she has a hard time managing liquids, and there's always the risk of aspiration, so this would help to mitigate that.) three times now and has been hospitalized within days of when the surgery was supposed to take place. She also has an infected ear tube, so they're going to remove that hardware at the same time. Except, for the third time this year, she's not, because she's hospitalized instead.

As is often the case with Mira, you know something is wrong, but you really don't have any solid idea of what. This time her hands and feet were swollen and she was having trouble keeping her oxygen levels up and she as having some issues with high muscle tone and high heart rates. So the list of questions/possibilities start going through your mind. Pain from her dislocated hips? gall stones? pain from the infected ears? aspiration pneumonia? neurological/seizures?

Thankfully Gillette has a quick-care clinic we can go to that avoids the emergency room and has doctors and nurses who know Mira. They were really booked today, but managed to squeeze us in between other appointments. First stop was to get some blood drawn for labs, then in for a chest x-ray, then back to the room to wait for the doctor. Labs came back indicating some type of infection (but is it in her ears or lungs or...?) x-ray came back looking worse than some, but the radiologist said there was not indication of aspiration or generalized pneumonia (so why is she having trouble keeping her oxygen levels up without the help of oxygen or her bipap machine?) Blood levels related to liver function are quite elevated (not the worst they have ever been, but definitely quite high) which could point to there being issues with the small gall stones that we know she has. However, by this time it was mid-afternoon and there was not time for her to be off her feeds long enough to get in her for an ultrasound before the end of the day, so that is scheduled for tomorrow morning.

So what do you do in the meantime while her respiratory rate is in the 70's (normally in the teens to 20's) and her heart rate is getting up to 170's (normally 50-70) and she is stiff as a board because of her high muscle tone and none of the tricks for rubbing her hand or back or neck are helping her to calm down?

We discussed with two providers (one who has never seen her before because now that she is 19 she on the adult unit and one who has been seeing her since she first came home) and decided that we would start her on an antibiotic (that would cover ears and lungs) and then give her a small dose of oxycodone to see that would help her to calm down, which would lead us to believe that pain is the source of why she is getting so worked up. If that didn't help, then we would move to valium. She got the oxycodone at 4PM and it was not until 6PM that her heart rate dropped below 100 and stayed there. Seems like the oxycodone should have taken effect quicker than that, but maybe not...either way by the time I left at 7PM, she was resting peacefully in bed with her heart rate around 70 and her oxygen levels in the mid-90's and respiratory rate in the 30's. 

Still no solid answers, but it was really nice to see her calm. I spent three hours just holding her on my lap and to start with, she was like a rigid balancing beaming tottering from side to side over my legs. Slowly she began to relax and was able to just lean against my chest and relax.

Leah's track meet

Leah's running on the track team this year (as a senior, having never done it before, but close to 70% of the senior class decided to join track to get one last hurrah together!) and it just happened that the one meet closest to our house also happened to be the most gorgeous day, so we *all* went. (Even Owen showed up at the beginning and overlapped with some of us, though had to leave before Leah ran.)

Krassi does NOT look thrilled at this moment, but in general he was having a pretty good time and enjoyed the cheering. Mira is next to him, shaded from the sun by the bag we have her suction machine in. Bobbi was there only because Matt had to run mid-way to pick her up from work, but she stayed in the van...

Leah's by no means a track star, but she did run a personal best in the 800 meter with us all there cheering her on! 

Getting the whole crew out for any event is daunting, but days like this make it so worth while, and I know it means a lot to Leah to have the whole family there. :)

A bunch of us with my cousin, who's the coach for one of the other teams. (Dad and Bobbi hadn't arrived yet, and Mira and Krassi are still behind the wall.)

Rinnah and Mira

 Rinnah's preferred location for practicing her cello is right next to Mira's bed. Yes, Mira's deaf, but those deep, rich tones are produced by a deep, rich vibration, and her hope is that Mira can *feel* the music.

Teen girls

So, Mira's doing her Mira thing, and decided she was ready for another trip downtown to the hospital. Her respiratory state was rough enough that Matt brough Leah along to sit by Mira and suction as necessary for the drive. It was good for our first daughter, having recently been accepted to the Nursing School at the U to add just a little bit more hands-on experience in an emergency department to her long list of medical experiences throughout her life. Leah was three when Reuben was diagnosed with epilepsy. Medical settings are very familiar and comfortable places for her. Apparently very comfortable, as you see how she's zonked out with her head and shoulders in Mira's chair! 😆

So, not surprisingly, Mira got admitted to the hospital a few days before Christmas. So we ended up with another Christmas photo sans Mira. It happens. What you can't see in this photo is that Leah doesn't feel good. She made it through the end of the semester at school, and then went downhill. Sick with a cough, no energy, a fever here and there...

And, believe it or not (I still can't quite believe it!) Leah herself ended up hospitalized! After her own trip to the ER with Dad and being sent home with antibiotics for pneumonia, she kept getting worse and worse. (Is it a good thing or not that we had a pulse-oximeter handy here at home that was readily available since Mira was in the hospital? We were using it for spot checks. And her fever wasn't going away and her O2 sats were slowly getting worse...) So back to the ER and she got admitted on the same day that Mira came home! Seriously - these big girls of ours!

After two nights in the hospital on IV antibiotics of a different variety, Leah was well enough to come back home and spend the rest of her winter break from school recovering.

We have an interesting health insurance situation. Being self-employed, we do not have any employer through whom to get health coverage, so for close to twenty years, we've just purchased our own directly from the insurance company. We have a high deductible plan, and, with now four family members who qualify for Medical Assistance as a secondary insurance due to their disabilities, we can easily meet our deductible in a few weeks with medical expenses that are covered by the secondary, and we have a running joke around here that no one else is allowed to get sick or need a doctor for the first six weeks of the year. Because after six weeks, the rest of us can go and it's covered 100% because our family deductible has already been met! But then LEAH had to go and be hospitalized on January 2nd!!! Seriously, girl! Haven't you been paying attention to the family rules?? 😁

But in true seriousness, what an amazing thing it is to be able to take her to the hospital. To be able to get her the medicine she needs to kick this pneumonia that she was NOT kicking on her own. That even though we have to pay the high deductible for her, that we CAN do that and we get to keep both of these girls for a while longer! 

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!

Mira got a hair cut

 Mira got her hair cut today. We haven't really CUT cut it since she came home, and it's so long and pretty...and more than she really needs right now! Even though we've kept the bottom third of it trimmed right up to her head for the last few months, she's got enough volume that there was more than enough to donate.

So this morning, we did it! Look in the mirror on these two to see the before, then the pony-tailed prep...

And the final result is VERY cute.

And look what we get to send off to share with a child who's lost their hair!

I think it's pretty neat that Mira, who has so little ability to actively contribute to the world around her, is able to share something really beautiful that she made.

I've spent a lot of today thinking about Toni, the adoption lawyer on the Bulgarian side that we worked with on all three of our adoptions. She is no longer living, so we can't share this with her, but I'm certain that she would have been more than pleased to know that Mira's beautiful hair is going to improve the life of another child! As Toni and I spoke on the phone one night during our week in Sofia waiting to get visa to bring the girls home, she told me that while with most of the children she helps place, she's excited to hear about all of the new milestones they'll reach and the accomplishments they'll have, but with Mira, her single request was that we make her hair pretty - to symbolically show the world that this little child is worth caring for! Well, that girl definitely has pretty hair, and now it's not only pretty for her, but it's going to be pretty for another little girl who is going through a tough time!

Family vacation: Day 1

 First step was to bring Mira to her buddies at Crescent Cove. They do a *really* good job there of knowing the kids who stay and of caring for them while they're there.

Kisses goodbye, and she's off.

Next step: load the van! (AND the trailer!) We don't usually use all of the seats in Big Blue because it's pretty tight, but when we need to, we can do 3 (the wide one which used to be the old back row), 3 (the narrower one) and 4 instead of the normal setup where we have the narrow 3, then the 2, and then the four. With this set up, and Mira not with us, and Owen coming up a day later, we had room for the girls' friend, Hope. Here we go!

Our first step was at our dear friends, the Martins (if you've read this blog long enough, you'll remember Chad as the guy who came and helped Matt with all sorts of things on the addition!  (He's mentioned in this post and here are some of his kids at the bottom of this post! Oh - and one with a photo!) They moved away a little over two years ago and WE MISS THEM!!) This was our first chance to visit at their house and see their farm-in-progress, and they made room for us to spend the night.

All of the girls (except Bobbi) in one room!

Got a kick out of this - this is our old bathtub that we removed from our old bathroom before putting on the accessible bathroom! They're using it in an outdoor shower area he's creating.

A few couch cushions, and the trailer behind the four-wheeler worked to bring Bobbi (and the rest of us) on a tour of their property!

It was hard to leave the next day. These people are so special to us, and their home was such a welcoming oasis permeated by the love of Jesus. I hope we can make it up there again!

Our whole crew...and Hope. I just realized that we're almost all color coordinated! Pinks and teals and royal blue? You'd think we planned it!

This one just makes me smile. :)

And then we were off for Duluth, aiming to arrive there at noon...but that's another post.

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!

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!