Thursday, October 19, 2017

Sick boy




Reuben's got quite the nurse! That little hand just didn't move from the top of his head.

A long (translate: low-priority because he's not THAT sick) visit to our Children's ER yesterday got us a diagnosis of pneumonia for Reuben. Hopefully that means our little guy who's been mostly sleeping since Saturday will start to feel better tomorrow after his antibiotics start working!

Wednesday, October 18, 2017

Making Big Blue bigger

So, a number of weeks ago we went to check out a bigger used Sprinter, because there are times when it is fairly limiting to not be able to take all of us and all of the wheelchairs in one vehicle. We liked many things about the vehicle, but it's also REALLY big, and not nearly as cute as our Big Blue. (It was white.)

Once again, God provides what we need in really odd ways. We don't do loans, which means if we don't have the cash on hand to buy something, we don't buy it. Remember that money we lent to a friend over the summer from our savings for bathroom? That money is enough to pay for the new van. BUT, for a variety of reasons, there's been a pause on the repayment of that loan (still going to happen, just not yet), so we don't have that money on hand.

So we didn't get that van, and are back to just Big Blue. But, the thought processes involved in the test driving of the white van led us down another, more cost-effective route.

Behold: Bigger Blue.
We purchased a new salvaged 4-bank of seats to replace our current back row of three seats, giving us one extra seat, and we plan to install a new bracket in the floor so we can take the middle row (a two-seater) out, and put our narrow 3-seater in there at times when we travel, and the old back row of three into the front, and make Big Blue into a 12-passenger van! That's just enough for the eleven of us, since Mira takes up two seats. We're currently looking for a trailer for the wheelchairs (because we can only fit two at a time in the back of Big Blue, and because if we're actually going on a trip, there's going to be *something* that would be nice to pack into a trailer!)

And, BAM! Bigger Blue at a fraction of the cost of another vehicle.

Friday, October 13, 2017

Endless Joy

Always interesting to me when I'm hearing the same thing from multiple fronts.

Reuben's seizures continue to continue steadily every day. It's been almost a week since he's had one during the daytime hours, but they keep coming regularly during the night, and he's been doing some odd eye rolling while awake this week that all of us who keep an eye on him are undecided if it's a matter of sensory stimming, possibly as a means of staying awake as he's terribly fatigued, or if they're sub-clinical partial seizures. Who knows. Certainly not any of us.

As I was upstairs with him during one of his seizures a week or two ago, I was flooded with remembrance of how strongly we understood the meaning of his name (Reuben Matthew = behold a son, a gift from God) in the weeks after his initial epilepsy diagnosis almost seven years ago. A child who can strip you of your own strength and teach you to lean more fully on God is a beautiful gift. Anything that turns us toward our Savior and drives us to trust only in him and long only for him is a good thing. As I talked Reuben through that seizure, I was telling him again to hold onto Jesus, and look ahead to the goodness God has in store for him someday when this damaged human flesh is finally gone and he is living in the completeness and newness of heaven, of the day when he will be able to sing, forever, with his very own voice the praises of his King.

Those moments make me yearn for that blessed time when there will be nothing to come between me and my God - every tear wiped away; disappointment, pain, suffering all gone. Just to be able to be there, face to face with my Savior as everything else falls away and pales in comparison.

Being the mother to Reuben and Tsvetomira daily drives home the beauty of yearning for heaven, and of fixing our eyes on Christ. These two children have difficult roads ahead of them in this life (and already behind them, too!) with no real hope of reprieve, yet have the gift of being able to enter eternity with so much fewer of the regrets that you and I will have.

My other children, on the other hand, have a tendency to keep me tied to this world.

I wonder and dream, what will this young man become? Will Owen ever change his mind about the fact that there are (and I quote), "...three things I will never like: broccoli, cheese, and girls." I, personally, think broccoli is pretty tasty. We shall see. 😊

Will delightful, smiley, always happy-even-when-she-says-no Gloria girl keep that disposition? Will she learn to speak fluent Bulgarian?? And that slightly-older sister of hers. Oh my. What fun (and what a challenge!) to watch this little flower unfold! I have NO CLUE what the future will hold for Evania, and wow does she make me curious to find out.

And this dear daughter - what a privilege to play a role in helping her grow up into a woman! Although dreaming about the future is still very hard for her, her Daddy and I see so much beautiful potential, and similar to 'Vania, we are both very curious to see what happens when our Bobbi is ready to spread her wings.

How about Leah: is she really destined to become the mother of fourteen children? Her plan is to have one more than Adam...however many that ends up being.

Will this young man expand his vocabulary? How much bigger and stronger will he get? He's come so far already. What a wonder it is to see him slowly, but continually mature and develop and become a caring young man! (Nice hair, Krassi!)

And will our Rinnah maintain her desire to "have a little girl just like Mira to take care of someday"? Only time will tell.

Time, yes. Time spent living in this world and watching what's happening in this world, and hoping and dreaming about the things on this side of eternity.

Matt and I are reading through a book together. Slowly. V E R Y slowly. We used to do this in the olden days when we only had three or four children, and called it our "date night." I would work on my sewing (in the days before we had nine children I generated about half of our annual income through a custom home decor sewing business that I ran from home) and he would read out loud a chapter or two of whatever book we were reading.

This time around we're reading The Hidden Smile of God: the Fruit of Affliction in the Lives of John Bunyan, William Cowper, and David Brainerd. This statement from the book really jumped out at me:
"While in prison [Bunyan] confessed concerning his wife and children, 'I am somewhat too fond of these great Mercies.' Thus we must learn to 'live upon God that is invisible,' not only because God is superior to sinful pleasures, but also because he is superior to sacred ones as well. Everything else in the world we must count as dead to us and we to it."
That statement captures what welled over me that night with Reuben as I held him through his seizure. There is great beauty in these blessings in our life that make it easier to separate ourselves from not only the sinful pleasures of this life, but the sacred ones, too.

On Sunday we sang:
All the treasures of this world 
Will never satisfy 
You alone are endless joy 
So, I cling to Christ*

Nothing, absolutely nothing in this world can truly promise us endless joy. Only Christ. So let's fix our eyes on him, fill our hope with him, seek after him, and keep him at the forefront of everything we do while we are still living with our feet muddied in this life.


Wednesday, September 20, 2017

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.


Thursday, September 14, 2017

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.

Wednesday, September 13, 2017

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.