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?

A peaceful moment

When she is uncomfortable, she's really, really uncomfortable (and we often can't figure out why!) but when she's relaxed, she's really, really relaxed! (The foam cylinder in her hand is a perfect size to help keep her fists from clenching so tightly.)

A day in the garden

The summer before we met and brought home Bobbi and Mira (but after we'd started the process) was a sort of idyllic year as far as our yard and gardens were concerned. Gardening has long been a hobby of mine, starting with a bleeding heart that my grandparents got for me and my parents let me plant in a little foundation garden behind our house and moving to a little 10x10 vegetable plot that my dad dug up in the back yard as we got older. When I was twelve we moved and I got to help my parents design the landscaping for the bare naked yard (brand new house) and my dad double-dug two beautiful 5' by 20' veggie garden beds that I thoroughly enjoyed. I can't remember at all what degree of success we actually had with the garden, but I DO remember how much I loved the planting and watching things grow.

Matt comes from a long line of farmer/gardener/yard-putterer stock. The almost-one-acre yard that we live on is what's left of his grandpa's truck farm from which he used to take produce to the St Paul Farmer's market. Our current vegetable garden is about 2000 square feet, and was the "kitchen garden" on Grandpa's property. His grandma (who I never really got to meet because her Alzheimers was quite progressed by the time I met Maty) had been an amazing flower gardener, and the yard is still full of all of her old beauties - peonies, iris, and many other treasures. We still get fruit every fall from the old apple and pear trees that his grandparents planted, and raspberries in the summer from the ones they used to eat off in the summer. One of our favorite things to do together when the kids are in bed (or during the day with them!) is putter in the garden - weed, plant, move, plan.

That summer before the girls came home was almost too good to be true. The weather was great, I wasn't pregnant (so the ground didn't seem like it was a mile away!) and Gloria was a content enough baby that she was happy to just be around, but didn't feel the need to be constantly held, so we spent many delightful hours outside. Oh yes - that was the year our neighbor worked at a garden center, and all summer long was bringing home off-casts that didn't look good enough to sell, but just needed a little TLC to be just fine, so we had a great influx of interesting plant material - everything was simply ideal. (I blogged a bit about it here.)

The years since then have been not so good in the gardens. Yes, we've gotten out there a bit, but it's been a sacrifice that I've felt that something that means so much has been taken away. This year, however, has come in a way that it feels like a smile of delight from a Father who knows me. There is so much that inspire worship when you're out in the middle of what he has created!!

With yesterday's incredibly beautiful and mild weather, on a whim we brought Mira outside. It's not super easy to get her in and out of the house (oh, I'm so ready for that ramp we're dreaming about!) but earlier this spring we reshaped some of the hillier parts of our yard so we have a more wheelchair friendly path to the back yard for Bobbi, and decided to try it for Mira!

Here she is in the shade of the huge crab apple tree (which every year shades more and more of the veggie garden!) where she won't get a sunburn, but can still feel the wind in her face.

After a while, Bobbi decided to join us, too, which is a pretty common passtime for her these days. Sometimes she'll bring her Bible out to read if it's not too windy. Sometimes her iPad if she's close enough to the house to still get wi-fi, and sometimes, like today, she just comes out to see what we're up to! Matt put her to work watering the gladiolas.

Here you can see Matt hilling potatoes, Reuben settling down with his iPad (at least he's not wandering!), Mira all wrapped up in her blanket, and Bobbi leaning in with the hose.

Lest you miss this, let me bring to your attention the joy that it is to have Bobbi contributing to this venture! It's a joy to have her interested, it's a delight to have her contributing meaningful work to the well-being of the garden, and such a great way for her to get to see in real life how God has designed all of these systems to work! She, remember, helped Dad cut the potato sets, so she's been involved to some degree already with the garden, but to have her out there working with us is fantastic. It's one more little thread that is getting woven into our lives as we live life together. Starting from sixteen years of none of those connections makes these interweavings that much more significant.

And for the record, Krassi did not come out yesterday. But's he's been out plenty of other times this spring! He still really only has his one ASL sign ("I want!/Mine!") but he gets a lot of mileage out of that one. We can ask him, "Krassi, do you want to go outside? Or do you want to stay in the house?" Once he knows the two options, I'll ask again with a pause in between, and it's usually not too hard to tell which one he's looking for! So he's not left out, here's a photo from a few weeks ago. I love how great he looks lounging in these chairs! He gets up there from laying on the grass all by himself! In and out and in and out all afternoon.

The new chair is here!

We all really love the new RED color. First of all, it's just plain fun, and secondly, I think it's not accidental that the girl who came home with favorite colors of gray, black, and dark blue three years later wants red. It looks good on her!

Stayin' Alive

Back when we were a small family of six,

and we were looking into educational options for Reuben who was three-and-a-half and going on two years into his epilepsy diagnosis, I was really impacted by the amount of resources our government, via the public school system, was willing to invest in "fixing" (or probably more accurately, helping Reuben overcome) his disabilities in order to succeed to the greatest degree possible. Part of what made me, as an already-home-schooling mother who was herself a home-school graduate willing to consider the public school as an option for Reuben was that one of the (many) reasons that we were interested in educating our children at home was that the student-teacher ratio was better than what any school could offer our kids! Realizing that Reuben, as a three year old, would be in a classroom with a teacher, para-professional support, and a speech therapist and occupational therapist...and only one other classmate...and would thus be getting a WAY better student-teacher ratio than I could provide at home (even with only four children!) was a big piece of helping me be willing to put my little non-verbal, vulnerable three year old Reuben onto a bus three mornings a week and send him away to school. And I still think it was a good decision in many ways, and that's not the major reason I'm actually writing a real, live blog post.

The real reason is something tangential to what that government-level investment made me think about. Already at that age, we could see a softness in Reuben toward the things of God, and a hardness in our oldest. As I looked at these two little boys, I realized that the question of who had everything and who needed help all depended on the perspective from which you were looking at the boys. If this life now is what's really important, then Owen was set - smart, friendly, athletic, motivated - and Reuben was not - non-verbal, physically awkward, developmentally delayed, a progressive, life-threatening medical condition. But if this life is just a little blip at the beginning of eternity, then exactly the opposite is true - all of Reuben's challenges will shortly be removed and all of Owen's advantages will accomplish nothing. The brokenness gets flipped on its head!

So now to today. Here in Minnesota, we've been carefully following the stay-at-home orders which started I-can't-remember-when and expire tomorrow [when I originally started the post! They've been over for a week now.] As we begin to make choices about who goes where and when and how and how much, one of the things we need to keep in mind is that the answers to those questions look different depending on what perspective you're looking at them from! It's easy to sound almost flippant, and I know this topic, especially as it relates to COVID is rather loaded these days, but one thing we've got to come to terms with is what our main goal is for our children. Is it merely "stayin' alive"? Or is it something other than that?

Much of that centers, in our family, around Mira. Way back when Krassimir first came home, two of the other children adopted from the Pleven orphanage died relatively soon after coming back to the States with their families. Since then, there have been more. It was and is really tough to lose those precious children. I'm not going to say that it was like losing my own child, but it felt like the next closest thing, as it felt like losing a sibling of my own child. I know Krassimir didn't know most of the other children he grew up with since they all lived mostly in their own cribs, but *I* still felt a connection was there because they had shared the same horrific history.

We went into Mira's adoption knowing that she was a very complicated child medically, and fully expecting to outlive her. As I mentioned in our update a few weeks ago, one of our desires in making her our daughter was that she would not have to die alone, but could die surrounded by a family - her family! - that loved her. So we've known from the start that the "success" of our adoption of Mira is not something that will be measured by whether she lives or dies. However, we never expected to be in a situation like this where the choices we make could have a large impact on when she dies.

It's one thing for a person to decide that they're not afraid of dying and are going to live their life during this time without "hiding" from exposure to the virus. It's another thing altogether if that person would go out to the grocery store without taking any precautions and then go to visit a friend who's going through chemo. Somewhere there a line has been crossed between living your convictions and being careless about the sanctity of life.

And therein lies the question. Do we protect Mira from exposure to COVID-19 at all costs? Or do we just go ahead and expose her and get it over with since death will set her free from the constraints of the broken body she lives deep within? Neither extreme is right. The right answer falls somewhere in the middle, and that's what makes it tough. Our job as her parents is to navigate - and not just for her, but for the whole crew that we're responsible for! - where in the middle is the right place to walk. I once heard a pastor say that the devil doesn't care which side of the narrow path you fall off, as long as you are no longer following the lead of your shepherd. (So that thought's been rolling through my head through all of this, and then our pastor said something similar during his sermon yesterday!)

The answer, then, I believe, falls in making our choices every day by submitting them first to God, asking him for his blessing and his guidance and praying as Jesus taught us: Your will be done.

~~~

Life is precious, and health and wholeness are things that when we work toward, we are in alignment with the heart of God. But, there is a difference between treasuring life, and avoiding death at all costs.

Here goes...

Bobbi's new baby

It's kitten season again, and our neighbors are fostering again, and we've been having some visits from the kittens. Bobbi's got a favorite, but we've got to wait a few weeks before they're fully ready to be "adopted."

We're looking at the one in the middle.

Meet Tihomir! Or Tihomira. We'll wait for confirmation from the vet this time. ;) And while Tihomir/a was happy with Bobbi, everyone else spent plenty of time with the other two as well!

Krassi in the sun

Krassi is SO happy to spend incredible amounts of time outside when the weather is good! Many afternoons he'll be the only one out there (we can do that when the mosquitoes aren't bad - otherwise he needs someone near him to help swat!) and I'll periodically go out and ask him, "Krassi, do you want to come inside?" And then I'll wait. No response. So I'll ask, "Krassi, do you want to stay outside?" and I'll get the immediate I want, I want response in sign language.

I tell you, that boy has not latched onto sign language the way we had hoped he might, but he takes that one sign that he's got really well and uses it to his full advantage!