Those gorgeous eyes

Matt took Tsvetomira to her eye exam this morning. We pushed this appointment out because we didn't figure there was much to learn, or anything critical that would come of it (which is why other things, like nephrology, endocrinology, etc) came first.

We were right. Tsvetomira is completely blind. Her eyes, while perfectly formed, are connected to her brain by optic nerves that are visibly withered. Whether that atrophy is inherent, or from years of no use because the vision part of her brain was never there to make use of the signals is unclear, and ultimately, irrelevant. Those perfect, exquisite, eyes see nothing.

No sight. No hearing. We don't know what she can taste or smell, but it's likely to us that the answer to that is similar to what she can see and hear.

So, touch is what she's got. What a profoundly silent, lonely world, and what a reminder to us to make the most of the one connection she has to the world - touch.

Laughter goes a long way

Reuben is still having seizures throughout the day every day. However, last night Matt and I got into bed a little bit before 11pm, and through some miracle were able to sleep solidly with no interruptions from Reuben or Mira (the usual suspects), nor from Evania, Rinnah, Gloria or Noble (the cat) (who are the second-ring suspects) until just a few minutes past 4am!! Amazing. I can't remember the last time I've gotten that much continuous sleep. It was nice.

Today progressed like normal (with the exception of the introduction of day one of the 2017-18 homeschool year), with Reuben having a few seizures throughout the day. We have an unusual family tradition of having a grandiose "Knickerbocker Glory" ice cream/fruit concoction (inspired by this e-card preview that is one of Reuben's favorites) in fancy glass dishes every year on Labor Day, and this year was, of course, no exception. We were missing a few ingredients (no fresh cherries when I went to the store), and the cinnamon tortilla crisps that I made got burnt to an actual crisp, so we substituted with broken wedges of leftover Sweet Martha's chocolate chip cookies from the MN State Fair, but overall, the reception was positive.

Because, hey, what's there not to like about a huge ice cream sundae??

Reuben was, as is often the case at mealtime, wandering around the table, asking for a lap to sit in, and was standing by my side at the moment when his next seizure hit and as he curled forward in the initial "tonic" phase of the seizure, he just happened to be positioned such that his face slowly and decisively was shoving itself deeper and deeper into the not-quite-empty Sweet Martha's cookie bucket.

There's no photo to share, because it just didn't seem right to not only have the whole table burst out laughing as our eight-year-old brother/son/grandson got hit by a grand mal seizure, but to also then take a photo of it. But, it IS good to be able to laugh sometimes during the seizures, and not just cry, because they are just a part of our life, and, yes, they make life hard, but life still goes on (until it doesn't), and here we are, so when it's funny, we can laugh. There's nothing like laughter to rob the seizures of the prospect of making any of our lives miserable.

The state of the waters

Earlier this summer I was talking with my mom about what the previous six months had been like. We had been prepared for tough, and nothing was really harder than we had anticipated, but it's still been tough!

I described to her how the first three months of the year felt like all we we able to do was try with all we had in us to keep our heads above the water - treading water for all we were worth, and keeping the heads up - breathing, yes - but not much more than that.

After three months we realized that the waters were calming enough that we were really treading quite effectively - shoulders up and everything, and we were getting steady sustenance - food and water that you wouldn't be getting if the analogy were complete, so we had the energy to continue treading water...but realized that that's all we were doing: treading water out in the middle of the ocean with not a clue even which direction to go to find land.

And that summarized the next three months. Treading, treading, steadily treading, shoulders up, steady supply of food, treading, treading, treading. And that brought us to June. School was finally out, and all of the medical appointments that had been scheduled for "after school was out and the schedule is lighter" were completed, and as I talked with my mom about the analogy, I told her it finally felt like we were just starting to figure out which direction we had to start swimming to find land.

So we started slowly swimming in that direction, and oh, was that nice! Progress! Forward progress! Still out in the ocean, still nothing solid to set our feet on for a short rest, but the nourishment kept coming, and we kept swimming, swimming, knowing that soon we would catch our first glimpses of land...

And then came June 18th.

We keep track of all of Reuben's seizures in a chart (you can see a piece of it to the left). Each horizontal row is one day. Each blue or green square is a different type of seizure (roughly categorized. He has more than just two kinds, but they fall into two general categories). The top half of this clip is from early May until mid June, and is pretty much the pattern he's had for years. A day of bad seizures followed by roughly a week of no seizures. The pink on the far left is every time we've had to give him his rescue medication.

Do you see the change? That's June 18th. Reuben has had seizures every single day since June 18th. Some days only two or three. Some days as many as 24 (which is too many to fit on the chart). Some of the seizures are low-grade, but have lasted for hours. They are hitting at all times of day, many without warning. His sucking thumb (which often gets stuck in his mouth) is chewed up worse than it's ever been. We have been up with intense hourly seizures many nights, and many days have needed to give him almost constant hands-on supervision to keep him safe.

We are exhausted.

Physically, yes, but also with the realization that this is likely his new normal, and though we knew that his syndrome almost guaranteed progressive turns for the worse, we'd been hoping that these "best" years would last a little bit longer.

About a week and a half ago we introduced a new medication to Reuben's routine, and after five days, we noticed a slight reduction, averaging 3-5 per day instead of 10-15, which coincided with when I finally had enough in me to start this post. Since then, we've had three days in a row with eight seizures, and Reuben's thumb looks like this:

 And that's after seven days of continuous bandaging to prevent further injury and give it time to begin to heal. It looked worse a week ago.

As I'm treading away here, after having been sick with some viral something that still hasn't gone away after two full weeks and then some (hm, think I'm maybe short on the "sleep" side of things?) and trying to figure out how we're going to start home schooling on Monday (with two students chomping at the bit, and two dragging like stubborn mules), there are a few things I am able to hold onto.

1) God is so gracious to be very blunt with us, his children, who can often be rather dense. At one point earlier this year I wrote about the beautiful 22 day long seizure free stretch that Reuben had - the longest stretch he's had in years. As I looked back at the seizure log after the stretch ended, I noticed that what I had suspected was true. When you take into account the eight hour time difference between Minnesota and Bulgaria, Reuben's last seizure before that long stretch happened within 10 minutes of when we were in Pleven picking up Tsvetomira. That's hard to explain as a coincidence; much more probable is the quiet voice of God telling us that he does indeed have every little detail under his tight control.

1b) I love the part in Job where the angels are presenting themselves before God, and Satan, like all the others, does the same. There is incredible comfort in the fact that he can do nothing without the permission of God. Is he evil? Yes. Is he on an incredibly tight leash? Yes. If he had to toe the line with Job, he has to do the same with me, and with my son.

2) We watch Reuben on a night vision camera when he's in bed before we get up to his/our room for the night. Anytime he has a seizure, Matt or I run up there to help him ride it out, and to prevent him from trying to escape as it's ending; he seems to think if he can just run fast enough he can get away from the seizure. But he can't. And anyway, running when your sense of equilibrium is so off that you still can't sit upright isn't a good idea. As I'm up there body-holding him, I will often whisper to him that Mommy's there, and lately have been even more direct with him. "Jesus is right here with you, buddy. He is strong when you are weak. You and I are very weak, Reuben, but that lets us see how very much stronger God is. He has given you a hard life, but it is a good life because you know how much you need him. Someday Jesus is going to take you to be with him, and all of the pain is going to be gone, and you will get to spend the rest of forever rejoicing in him. He is with you right now; you're not going through this alone."

And I cry. I cry because it's easier to do when you're tired, but mostly because this world is full of so much pain, and this life is hard, and there is no hope in this life if we can not hold fast to the truth that this life is but a momentary breath in comparison to eternity.

Reuben had a seizure in my lap this afternoon, and Gloria was right there holding his hand and helping him out.

Oh, come, Lord Jesus!

An English joke

Have I shared about Bobbi's habit of giving superhero names to the important people in her life? Daddy is Superman; Grandpa is Batman. And she's got a great sense of humor in it. Her doctor and his nurse both have movie names (Jackie Chan and Liam Neeson). The best part about that? Her doctor is, yes, a short Asian man...but with mild cerebral palsy.

Well, tonight as I helped her with her bath (because we have not progressed any further whatsoever on the bigger bathroom), she was showing me a small bruise on her leg. She knows the English word for "bruise" and then paused, and told me her bruise had a name: Bruce Willis.

I love it that she is making jokes in English!

On Tsvetomira

Skimming back over the last few posts, I realize there hasn't been much about little Mira! Partly that's because there isn't that much variety to her days, and partly it's because the last month has been really tough with Reuben's seizure activity, and I don't always have the brain power to post more than something "easy."

So here's Mira.

See that little smile on her face? We often get that look when she's getting her Vest treatments, but it sometimes peeks out at other times, too. Girly's hair keeps growing. We haven't decided yet what's going to be the best way to keep it. Too long, obviously, will be difficult to keep up, and uncomfortable for her, but it's so pretty - golden and wavy - and we want to find the best way to show it off, and know that we still want it just a little longer so we can sweep it out of her eyes. Right now it's at that awkward stage where it's too long to hang nicely (especially with how very small her forehead is because of the degree of missing brain matter to fill up her skull!), but not quite long enough to reliably stay pulled off to the side without constant attention.

One of my favorite things when we're all going somewhere together, is when I look over and see Daddy pulling the spray bottle of water and a comb and barrette out of the "Mira essentials" bag and make his little girl all pretty when putting her into her chair after laying down in the van for the drive.

Just today we started using atropine drops which help to dry out her mouth a bit. She has such prolific secretions and such difficulty handling them, that we are constantly battling the drool. Because she does not eat by mouth, she does not need the saliva to help her chew and swallow, and because the drops are quite localized in their effect, there are not the same concerns about systemic dryness like would be associated with a medication delivered via g-tube. We can just use the drops when we need to, and today's first run seems to have been a success!

Mira continues to be adored by her younger sisters, and it's been sweet to see Krassimir growing in his awareness of her, too. If he sees one of her things (pillow or drool cloth) laying around on the floor, he brings it over and puts it on top of her. Yes, it's possible that it's just the thrill of being very near to her cushion, which is a tremendous temptation for him, but something that is off-limits (we can't have him pulling it out from under her!) but we prefer to think that he's finding his own way of being her big brother.

We continue to see occasional episodes of dystonia, but much less significant than we did at the beginning, and still do not think we have witnessed any actual seizure activity. Crazy. ;)

Mira has also continued to pile on the weight, and after a mild cut-back in her daily intake in June, our last meeting with her complex care doctor and dietician resulted in another more significant decrease in what we're feeding her every day. Matt and I are pretty happy with the current status quo. She obviously needs more weight than she had when she first came home!

In Sofia on our pick up trip

During her first hospital stay upon arriving in the US

But she also doesn't need to get too big. Our job is to help her find her "just right" - sturdy and with the reserves she needs to fight when she gets sick, but not to the point that we're putting undue stress on other organs. She's spending a lot of her time looking very relaxed and comfortable lately, and that is a good sign that we're in a good place.

Managing her bowels continues to be our biggest challenge. Her neurologic deficits make the normal "movements" a very difficult thing, often triggering some mild disautonomic storms. We are dancing the fine line between too much miralax and senna oil and having stool that runs all over and having not quite enough and seeing her in great distress to move things through. It is a very delicate balance, and we still don't have it fully figured out yet.

Maintaining a stable body temperature is also a challenge for Mira. She regularly swings throughout the day from a high around 99 down to a low around 95, and sometimes the range is greater. We've just started monitoring this more regularly, and it's amazing to watch it swing.

Last night she was agitated trying to move some things into her diaper, so I picked her up and held her on my lap during the second half of our Bible study. She loves that, and it calms her right down. Leah still regularly asks to hold her for a while after supper, and gently combs and strokes her hair while she snuggles her close. Even though she still spends much of the day laying on her cushion, her days are regularly punctuated with these kinds of human interactions that she responds to so well. We're so glad she's not alone anymore.

Out of her comfort zone

Bobbi's life has been full of challenges over the last six months, and one of those is generally that she's getting pushed out of her comfort zone in all sorts of ways!

Six of our nine children are part of our local 4-H club. We have come to enjoy 4-H because it is fairly easy to commit to (one meeting per month), provides fun opportunities, and is a club that is designed to incorporate a wide range of ages (kindergarten through first year of college) and interests and abilities. It's perfect for our larger family with a range of unique situations.

The culmination of the 4-H year is the County Fair, and the showing of one's "project." It's taken me a few years to really figure this out, but a "project" is really anything in the world that you as a club member can come up with. You can make something, bake something, train something, research something, perform something - pretty much anything you can think of can be made into a 4-H project. At the judging day, each club member meets individually with a judge in their particular project area (engineering design, clothing, quilting, photography, performing arts, fine arts, crafts, shop, indoor gardening, you name it!) and together they discuss the project, the goals, what was learned, what could be done better, and then each project is given a ribbon according to the Danish system of judging where the projects are not judged against each other, but are judged against a standard, and then given a red (average), white (below average) or blue (above average) ribbon as appropriate.

Because, in my experience, most 4-Hers tend to be more motivated, either internally or by their parents, the majority of the projects end up being above average, but there is still an element of the unknown in the process.

Especially for a certain sixteen year old who's never in her life been in a situation like this!!!

We were very grateful to our friend Avrora, one of the Bulgarian women we've met through the Bulgarian school, for agreeing to come along and be Bogomila's translator for the afternoon! I really think Bobbi could have done just fine on her own with the way her English skills are developing, but having a Bulgarian speaker along greatly helped to make her less nervous.

So, here she is! Stretching herself in a way that she had repeatedly over the week leading up to it, told me she could not do. But she did!!

Bogomila enjoys baking, and baked a beautiful loaf of Carrot Banana Walnut Bread. She is getting quite adept, even with the limitations of her cerebral palsy, and can now measure almost all of the ingredients by herself, and does all of the mixing herself, too. (Mom still reads the recipe!)

Her second project was a collage she had made from photos of her friends from Bulgaria. She again was very hesitant to share, but was delighted with the blue ribbon she was awarded.

Here she is during the fair a few days later, checking out her project where it was hanging on display.

She did it!! One more "can't" turned into a "can." Little steps, but real steps, and now I'm looking forward to seeing what she decides to do for next year now that she has some idea what is possible!

This whole experience was very uncomfortable for her, but we as her parents know that some discomfort now holds great promise for possibilities in her future, so because we love her, we push her into situations that are anything but comfortable! And she did it!

Art Salami

This is an important [albeit slightly tongue-in-cheek!] post about the significant topic of bonding.

We don't really have anything to compare to, but have found that our process of building a strong bond with Bogomila has been progressing at a pace we are comfortable with. It's funny how there are so many levels to what it takes to make that sort of deep connection of trust and devotion to another person, but one of those is being met in the development of a new tradition between Bogomila and her Daddy.

We call it, Art Salami.

There's even a song to go with it some days, to the tune of one of the Indian songs Bogomila likes. (Vayts - you might know which one we're talking about!)

So, without further ado, enjoy the show!

Exhibit A: a flower

Exhibit B: a heart!

Exhibit C:  "V" for victory.

Exhibit D: "B" for Bogomila!

Exhibit E: Intended as an umbrella (it was a rainy morning), but "palm tree" is also an appropriate interpretation.

Exhibit F: so, inspired by the tree guess from the day before, here is a Christmas tree, in honor of the Christmas music and Christmas movies Bobbi's been listening to.

Exhibit G: Owen took a turn. It's "Bo" (one of her nicknames) in salami and ketchup.

Exhibit H: A three-dimensional flower. Bobbi doesn't like flowers (thus the face), but the salami/ketchup medium is so conducive to flowers...

Exhibit I: This one's better from the side, but that photo apparently doesn't exist. But this one is a pyramid of sorts.

Exhibit J: Another three-dimensional flower

Exhibit K: A patriotic gesture on the 4th of July. How better to be introduced to American culture than through ketchup and salami??

Exhibit L: Daddy's architectural bent shows through in this rendition of the Leaning Tower of Pisa.

Exhibit M: In my opinion, the pinnacle of Matt's artistic efforts. It's hard to surpass...the Eiffel Tower.

Dad's creative juices needed a recharge after that one, so Owen again picked up the slack. (I made one attempt early on, and was rejected forever from the elite group of salami artists.)

Exhibit N: Um. I'm not quite sure what this was supposed to be. But it put a smile on Bobbi's face!

A few days off while we were in Wisconsin, and then Owen and Bobbi stayed a few days longer with my parents meant that Matt was back in full force.

Exhibit O: Believe it or not, this is BATMAN! In salami. Batman is Bobbi's special name for Grandpa.

Exhibit P: Owen's turn again with a winner's podium. It's hard to see from this angle, but with a little help from google, Bobbi got it.

Exhibit Q: Nothing other than Bobbi's iPod!!

Exhibit R: Branching out again with the addition of toothpicks. But this floral arrangement turned out to be very difficult to eat without making a mess, so the toothpicks have not made another appearance.

Exhibit S: Some days the inspiration is hard to come by. It's a chevron.

But even when the inspiration is less than thrilling, the experience itself is definitely memorable!!