Twins

Got home from church today and noticed that Krassimir and I were twins! Here's a not-so-great selfie as proof. 😊

Sitting on the stairs is really hard work for Krassi! Trying to do it while Mom's asking him to look at the camera is even tougher!

So here's a smilier one where I've got him on my lap so he's better supported. Holding that head up and smiling at the same time isn't as hard to do, then!

Meet Lili...

...well, you may remember "meeting" her a year ago when we were in Bulgaria. I'll have more to say in a few days. In the meantime, I wanted to share her smiling face...and this cute little hedgehog she found!

(From last year: Bulgaria trip part 1 and part 2)

Completion

...I always pray with joy...being confident of this: that he who began a good work in you will carry it on to completion at the day of Christ Jesus. Philippians 1:4,6

How many times am I reminded of this in my own life, or is an encouragement that I share with others - there's this tension of the "already/not yet" sort of living day by day as a follower of Jesus. The author of Hebrews says it well, too: For by one sacrifice he has made perfect forever those who are being made holy. (10:14) The verb tenses used there are significant: "has made" is past perfect tense - something that has been done and completed in the past. "Being made" is a very present tense verb - this is what's happening RIGHT NOW. We are in the process of being made holy, and Paul gives us above the time frame for when that's going to be finished.

Guess what Matt and I did a few weeks ago - we finished putting up the last of the siding (the horizontal wood boards) on his office of the west addition!

We began that project over seven years ago. And through all of those seven years, when we looked at that office, that is what Matt and I saw, even though everyone else just saw this:

from 2015

It's pretty neat to finally have what we've been able to see all along be visible to the rest of the world! And, like so many other things in life, our little lives here give us little glimpses into the truth of the bigger picture of what God's up to, what he is like. He, too, has a design for the lives of his people, and even though we can't always see it, either in ourselves or in others, that doesn't mean he can't see it, and it doesn't mean that there won't be a day when everyone will see it.

Oh, to see with eyes that can see what he sees. Come, Lord Jesus!!!

Cattails

We often get Krassi out into the yard to play. I don't so often get him out of the yard with us! But Monday was a beautiful day, Mira was at an appointment with Dad, and Bobbi at a therapy session with Rose, so the rest of us [well, the rest of us minus Owen and Leah] decided to go pick some of the cattails that grow in the retention pond at the high school next to our house, at Evania's prompting after seeing them on the way home from church the day before.

I'm reminded again how hard it is to get a good picture of everyone when you have more than two or three children!!

Not bad, but Reuben's not looking. Or Krassi. Or Eben. Or Gloria, really. So we try again:

Well, kind of better. Maybe. Oh well. You can see all six of them, and that counts for something!

I'm never sure what Krassimir will think of some of these outings, so I enjoyed seeing that he kept a firm grip on his cattail all the way home! And that with his left (non-dominant) hand, nonetheless!!

"Because I am artistic"

Without being here day in and day out, this may not have as much meaning to many of you as it does to me, but Bobbi came out of her room the other day talking about how she's looking forward to her birthday (which isn't until November!!!) and hoping she gets more art supplies (colored pencils, nice coloring books, etc) because she is artistic.

Hearing her describe herself in that way - an honest way and more importantly, a positive way is pretty thrilling. She's struggling lately to fight against her tendency to spend all of her empty hours in front of a screen, and pouring herself into her artistic efforts is a great way for her to do that.

Did I even have a chance to post about how we re-did her room in early March? On our weekend away, we discovered something at IKEA that we thought could revolutionize the way Bobbi uses her room. We've wanted to get her some sort of a work surface for reading or drawing, but weren't sure how to fit it into her room because space was already tight as it was. Well, IKEA had it. Within a week of our days away, thanks to Craigslist and a trip to IKEA, she was all set. I just looked back and found some photos:

There used to be a dresser in the corner where the desk is now. It was a nice dresser, but it wasn't something that Bobbi could use on her own. Pre-surgery, when she was kneeling on the floor, she could get down there in front of it and pull open the two lowest drawers, but the uppers were too high for her, and she can't get into it with her wheelchair. It also took up a lot of room both itself and with the clear space needed to get the drawers open. The new system is amazing on many counts - she's got a desk with great clear space for her wheelchair to get under, and the little bins and open shelves are accessible to Bobbi on her own. And there's *just* enough room to open her door and get her wheelchair in and out of the room.

But that's a digression. The point is, Bobbi's got a great space in her room to hunker down and get to work.

Her favorite media these days is colored pencil, but she's got a great collection of markers and crayons as well, and often will use a combination of all of them depending on what she is doing.

Please note that these do not photograph well, but that said, here's some examples from a coloring book of faces that she's been working in a lot lately.

This one is not yet completed (the flowers in her hair aren't done yet as well as some other details), but she's got a great sense of color and blending, and her shading abilities keep improving. Look at the careful attention she paid to the fine grain of the hair!

And here's a closeup so you can see a bit more of what she's doing with the face - the range of colors that she uses in each drawing, layer upon layer, is fascinating to me.

And here's another example (also still unfinished). Look at the fun variation of colors in those tiny little birds!

The tiny leaves get me - each leaf is gradated from orange to yellow to green in different proportions. It's striking in real life, and the photo only hints at it.

Both details above were taken from this picture, showing the degree of fine attention that she's paying to each tiny bit of the drawing.

Not only have her artistic abilities consistently grown since we met her and especially since she started putting in regular time on it, but other character qualities as well. Her ability to deal with disappointment is one - just last night she started one that she'd had me print off the internet, and she was dissatisfied with how it was coming, so rather than blow up, throw everything onto the floor and declare that she's never going to color again, she asked me (yes, with some frustration in her voice - I get that!) if I could print her a new one, and today she did it again, and was pleased with the results. Because she is artistic and she is not a failure. And artists just keep on being artistic even when something doesn't turn out the way they'd hoped.

(Two more just for fun...and to show the range of what she's interested in.)

Mira's home

Who knows what's up with this girl. We don't. The doctors and nurses don't. But what we do know is that she's well enough to be back home again. They kept her until this morning mostly so they could get some maintenance things done - they replaced her g-j tube, which is something that has to be done in the hospital, and they made some adjustments to her chair (including making us two back up pads for her custom shaped back so we have something to use while we're washing the others...which happens plenty because she often ...goes...when she's in her chair. And no amount of chux pads can keep everything perfectly clean.

We also have a new piece of equipment set to show up tomorrow. We've been using a battery operated pulse-oximeter for the last few years to spot-check her heart rate and oxygen levels, but with some of these storms that she's starting to have at night but without making any noise of distress to alert us, so twice over the last few months we've come downstairs in the morning after what seemed to be a peaceful night to find her in a really bad state with her heart rate and the accompanying body temperature. Having a steady monitor that we can leave on all night will give us one more clue to work with.

Maybe not the most flattering photo of Mira, but here's me saying "hi" to my girl. Because she can't hear, I try to talk to her with my vocal cords touching her - on her head, her shoulder, her hand - to give her the best chance she can to "hear" mommy's voice.

It always surprises me how much I miss her when she's gone. It's not like she talks or interacts or anything, but her corner feels awfully empty when she's not here.

Fourth of July

For the first time, we've been able to make our annual 4th of July fruit tart flag using only fruit from our own yard! Those are blueberries and black raspberries for the stars and the stripes are red raspberries and sour cherries (you can't grow sweet cherries where we live - *just* too cold in the winters - but this variety is considered "the sweetest of the sour cherries" so they're edible right from the tree...as long as you're expecting a tart treat! Thankfully all of our kids (who eat food) are accustomed to less rather than more sugar, so they will all happily eat these right off the tree).

 The Fourth of July has always been a big deal for our kids. We have a few years' running tradition of inviting our neighbor/cousins, S & S, over (one Matt's dad's generation and one Matt's generation) for the afternoon and evening, just this year it's without fireworks.

We started off with red, white, and blue water balloons, with Dad as the target.

Reuben's sneaking up on Dad. (It was hot. Pants were optional for certain children who don't regulate temp well - we live in a fairly secluded yard for being in a first-ring suburb!)

A whole crew busy loading up - the sled is full of balloons. Krassi loves this! His favorite method is simply to squeeze each balloon until it explodes in his hands!

You'll notice there's no Bobbi. 😒 Some days "family" is a little too much! (Yes, that's partly just teenager and partly that she's kind of all or nothing and doesn't want to have to share her time with S & S with her siblings!) And partly, it was REALLY hot, and she's got a pretty decent bedroom on the north side of the main level that doesn't get as hot as much of the rest of the house does! But still, we missed her. And Mira, who had other plans for the weekend...

We followed up the excitement with hot dogs, guacamole, and other goodies (including rhubarb crisp that S made with our rhubarb) and instead of fireworks, watched...Anne of Green Gables!!

A good day to be at the hospital

Mira sure picked a nice hot week to stay in the nice, cool hospital. We don't have A/C at our house, but do have a window unit in the room she is in (and one in our bedroom that we turn on just to cool the room for Reuben to fall asleep in - his seizures can be exacerbated by high temps. We always shut it off when we get up there in the cooler part of the night because we're so used to NOT having it that it feels clammy!) but it's still not quite as nice and cool as they keep it in the hospital.

No one's still quite sure what's up with that Mira girl. They took her off one of the antibiotics that they put her on, and may take her off the second tomorrow if she continues to look as good as she's looking. Matt will be meeting with a rehab doctor tomorrow to talk about the pros and cons of different tone management techniques. It's still possible that tone-related pain was the source of her issues yesterday. No one really knows.

In the meantime, Mira's corner is kind of lonely! So Leah decided to fill it for a few minutes.

Pneumonia (?)

Just heard from Matt - Mira's COVID came back negative (which we expected), but she does have a not-so-bad pneumonia that they're going to admit her to the hospital to treat.

After over two years of counting the weeks between hospital stays for pneumonia, this is the first time in fourteen months that she's been in for it. Hard to complain about that! Funny thing - one of the biggest reasons we're glad it's not COVID is that Gillette is not taking any COVID patients, so if she DID have it, she'd have to be a hospital where no one knows her. At Gillette, she'll be familiar, which is really a good thing when you've got a complex medical condition!

Hyperpyrexia

"Hyperpyrexia is another term for a very high fever. The medical criterion for hyperpyrexia is when someone is running a body temperature of more than 106.7°F or 41.5°C. Some doctors lower the measure for hyperpyrexia to include anyone with a body temperature of 106.1°F or 41.1°C and above."

106.5°F certainly puts Mira in that range. She's been just unhappy for two weeks here, and we haven't been able to figure it out. She'll have long stretches each day when she's very comfortable and relaxed, and then something will set her off and she'll be just NOT. Poor Matt, who usually takes most of her cares at night, has been pretty tired lately, to say the least, and has been sneaking in a before-supper nap almost every day. Her lungs have been sounding good as per her nurse, but we're sitting here wondering, is she constipated? do her hips hurt? does she need to pee? is she getting TOO much of her meds to keep her from getting constipated and she's crampy? does she have COVID? (Because knowing her, she would manifest in some really odd ways, just because!) is there a hair wrapped around her little toe? is it emotional anxiety? something else?? She's a tricky one.

Last night when her heart rate was flying up into the 170s for the second time this week, we gave her the valium that calms her down, and went to bed. She was fussing a bit an hour later around midnight, so Matt came down and changed her, and she was quiet the rest of the night.

Well, turns out she was storming silently, which she's done once before - the valium didn't work. Her heart rate was flying, her respirations were ~150/minute, her temp was 106.5°F. We put her into a tepid bath and got her cooled down, gave her another dose of valium, but she was still having a tough time calming down.

We could tell she was really out of it because she wasn't complaining at ALL about being in the tub, which is not normal for her!!

A call down to Gillette, and we all decided that she should come in, via the ER (because with the temp they won't let her into Gillette's Quick-Care clinic for COVID reasons, though it's not likely to be COVID, and their Quick-Care isn't really set up for someone in her state anyway!) So off they went. She vomited as Matt was putting her into the van (right after this photo)

so we left the other kids with Leah and Rose so I could accompany them downtown, which was good, because she vomited again, which I was able to catch with the suction machine.

So, now we wait to see what they can figure out, which is usually "not much." Poor girl. She's missing her PT eval at noon today, which could very well be the source of her issues - hip pain. So now that will have to wait for next week. Oh well. What are you going to do?