Touch

The kids and I were reading a book one of us picked out at the library last week. It begins like this:

Littles are loved from the moment they're born.

They're swaddled, and coddled and kissed every morn.

Immediately one of my own littles (I think it was six-year-old Rinnah) interjected, "But Mira wasn't!!!" And so, in the midst of something as mundane as reading a simple rhyming children's book, we took a moment to talk about how important all of that swaddling and coddling and kissing and loving truly is for little (or big!) human beings.

She may not have been when she was born, but we do our best to ensure that she is now.

My little helper

Mira was helping today during her appointment with her neurologist by holding the papers for her lab work. What a big girl. 😉

Most of what we're checking for her today is for her endocrinologist in our constant monitoring of her sodium levels. We're keeping her at a good spot, but it doesn't happen without active monitoring and appropriate adjusting!

Reuben's along with us, too, so we can take our first draw to see how he's tolerating his new med, and if there's any room to safely increase the dose since the "full" dose we're at now isn't making the difference that would make a med of this caliber worth continuing.

Enjoying each other

We had another great Hope Kids event this past Sunday. This is their biggest yearly shebang, and it was just as over-the-top as it was last year. Once a year they put on a festival at the stadium on the University of Minnesota campus, and have pretty much everything you can think of - bounce houses, laser tag, face painting, dunk tanks, petting zoo(s), pony rides, a climbing wall, tie-dying - you name it - all staffed by the different sports teams from the U. It's a super fun afternoon, and the pictures probably tell it better than anything I can say.

Here we are walking in. Leah's piggy backing Evania. Owen's pulling Gloria and Reuben in the wagon...while piggy-backing Rinnah (who really could walk just fine, but it's cool that her big brother is not only willing, but also able to heft them all along!) Krassimir is being pushed by Jessica, a high school age friend who gets pay for a few hours a week of helping us out. Grandma's along for the afternoon, and Matt's way back behind her by Big Blue with Mira. Bobbi was out for the day shopping with her cousin.

Pony rides were a big hit last year, and this year was no exception. Sadly, Reuben had no interest this  year. He's exhausted and spent most of the afternoon in the wagon or someone's lap, and had a few doozy seizures over the time we were there as well. BUT, we had two new riders this year: Gloria wanted to give it a try since all the big girls were, and Krassimir tried it, too!

Yay, Krassi!!

This was the one single thing that got Reuben to climb out of the wagon - the goat. He saw the goat (who tried to eat his Bible last year), climbed himself out, walked over, and immediately propped his Bible on the goat's back. That didn't last very long, but the gesture was so Reuben. The goat, however, wasn't so into being treated as an end table.

 

Leah and Rinnah aren't really all that into superheroes, but we knew Bobbi would appreciate this one.

Rinnah at the dunk tank (manned by the U of MN swim team). It wasn't until I looked at the photos that I noticed the game was rigged...on behalf of the thrower. It explains the momentary time lag between the throw and the dunk.

All four of these girls wanted to touch the snake! Evania was probably the most taken by it. (Aunt Sara would have been so proud!)

Killing time while Dad held their spot in the face-painting line. This simple booth was sponsored by the place that supplies all of Mira's miscellaneous medical items. The man working the table got a kick out of Evania's "game face."

These kids had a blast blowing bubbles for Krassimir.

Owen took advantage of being twelve years old, and mostly floated on his own. Here he is on the big climbing wall. He had to run back to the van to take off his jeans and change into shorts because he didn't make it on his first time up the wall because his legs wouldn't bend!

 The face painting line was long, but well worth it. Rinnah talked all the way home about how she wants to be a face painter for a job when she grows up.

My two kitties together.

Then it was down onto the playing field, which was ringed with more bounce houses and ball pits and various blow-up playthings than you've ever seen in one place before in your life (except for here last year).

Krassi loved getting bounced. "Breathe, Krassi, breathe!" He laughs SO HARD!

Walking back to Daddy and the wheelchair.

Here's Mira and Reuben hanging out with Daddy.

The cheerleaders were pretty taken with Gloria (and a few other babies). What started with just two sharing their poms with her turned into four...

 And then more...

 And then they started doing some fancy moves with her...

Which ended her up on video on the big screen overlooking the field!

Little girly knows what she wants. She was done with pom-poms, and looked at me and pointed across the field to the mini-jump where she'd been earlier with Leah, Rinnah, and Evania. So I walked her over, and she climbed herself right in like she owned the place.

 While I was over there with Gloria, Leah came running over to tell me Reuben was having a seizure. So I sprinted back across the field to where he was sitting with Jessica, and coached her through the rest of it. I think that's the first full seizure he's had with her when she's actually been the one guiding him through the whole thing beginning to end. Previously he's had a few partial seizures with her, and she's been at our house when he's had them, but we'd been the primary people "on" it. And it wasn't her last, either, as he had another on the ride home. She did a great job, though, staying calm through the whole thing, and doing just what we'd told her needed to be done.

 And here's Daddy with two of his little girls walking back toward us as the day was coming to a close. Perfect weather, lots of great memories. We really enjoy these days.

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!