Phew

She's home.

Regarding the lack of posts, we've had an exciting week involving frozen water pipes (but not burst), a dead oven on Christmas Day, influenza, international guests, a day of 10 seizures out of Reuben after going 37 days seizure free, and probably more, but that's what I can remember right now. Oh yes - Bobbi had another round of Botox shots this week, too.

But anyway - she's home, and hopefully is going to stay that way for a while!

~~~

And four hours later I remember another one - Matt had to take Grandma for an uneventful (but long) visit to the ER on Christmas Eve. Phew. ;) I think there's more, but again, the brain is full.

On the lighter side

Meanwhile, life has to go on here at home even when Daddy and Mira are at the hospital.

Monday this week was cookie-baking-while-getting-school-work-done day. Gloria decided we all needed hats while we were working, so went digging in the little girls' hat bin and brought us our selections one at a time.

The update on Mira is that the infection has successfully cleared out of her bloodstream (yay!) and her platelet levels continue to slowly rise. Some of the other concerning levels are correspondingly dropping as her overall well-being is improving, so she's generally heading in a very good direction.

After losing one of her IVs last night they talked with us again about putting in a PIC line which gives them more secure access to her bloodstream both for her medication (which has to be intravenous for 14 continuous days, and missing a dose means starting over at day one) and for blood draws. When they talked initially about it, her platelets were still too low to risk it and they were not certain the infection was out of her blood, but with the loss of the one IV (and she's a tough poke), and the good trend on her labs, we decided to do the PIC line this afternoon.

That means that we now have the option of bringing her home. Her pneumonia has really been a non-issue with this hospital stay. Her lung x-rays aren't looking great, but symptomatically she's awesome as far as pneumonia goes. Even with the PIC line already in, we are still unsure of the balance of pros and cons of having her home before she completes her medication. Honestly, one of our biggest concerns is our very capable almost-two-year-old "nurse" who still has a touch of a runny nose and is very confident about things she really knows nothing about, but wants desperately to be involved in. Most of the worst of the nastiness that we've had with nasal junk appears to be mostly gone, but we'd like to get a few more days past that ourselves, and a few more days of steady out of Mira before we consider moving her home!

It's exciting, however, that "home" is an option on the table.

Bowling

Purely just for fun, here are a few photos of our night out with the kids' 4H club for their annual "Bowling and Cookie Exchange" Christmas party. They rent a small six-lane alley in the basement of an old school, and we get the whole place to ourselves. Except for Mira, who was just as happy spending a quiet evening at Gillette, all of us made it!

 Reuben loves to watch the pins go "Down"

Krassimir is quite the bowler - very into what he's doing!

 Evania, too, takes the job quite seriously - always has.

Krassimir had the highest score of anyone there that night.

The girls were pretty evenly matched.

My dad's response when we sent him this photo? "Beware the Bulgarian Bowler!"

Owen was ready to try out a variety of strategies, and wasn't ashamed to make the most of the ramps when necessary!

Gloria mostly spent the night proudly stepping down off this little stair at the edge of the bowling floor. Oh, the skills of a not-quite-two-year-old!

She "looks" good...but...

So, the update on Mira.

On the outside, she looks great. Breathing room air with no assistance, sleeping peacefully, good color, relaxed. But on the inside, not so much. She does have mild pneumonia, which after three days of antibiotics is just last night starting to show some slight improvement, but the bigger deal is the UTI (which we've now learned that vomiting can be a symptom for a UTI).

After a doozy of a time getting a urine sample, including six failed attempts at cathing, they finally got a sample, and after some more time, got the results of the culture last night, and it's E coli, and a nasty, drug-resistant form of it. At 11pm last night the doctor called us with the results, and with their proposed plan of attack - there's only really one good drug to try that the culture seems to respond to, but it's a close cousin of the one that they think caused the severe anaphylactic reaction during her first ER visit back in the spring. As a precaution before they started it, they wanted to move her to the PICU so they would be pre-armed with staff and all necessary medical interventions in the case that she did has a negative reaction to this med, too.

The even more important reason to get the infection under control and soon is that there are signs that it has spread to her blood. Definitely not a good thing.

Thankfully, she did NOT have a reaction to the new med, so they moved her back to the regular floor this morning, and hopefully this one will do the trick.

Anyway, we're back to thinking this is going to be longer than just a few days' visit to our favorite hospital.

And....they're gone again

Mira and Dad are taking a jaunt back to the ER tonight. Possibly just for some blood work (why did she have another bloody nose last night?) and an x-ray (why were her sats a little low this morning, and why was she breathing a little more rapidly than usual last night??) and just a general once-over (why has she thrown up four times over the last three days with no other signs of illness? We know she has some GI struggles, and that often her vomiting is related to trying to fill a dirty diaper, but four times in three days is out of the ordinary for her.) And, then again, possibly for another inpatient stay.

I told Matt as they were leaving that I'm not sure which I would choose at this point, so I'm glad I'm not the one who does the choosing.

Mira in street clothes

Above is the title of an email I just got from Matt.

Below is the body:

We will be on our way home once all the paperwork is done.

 

~~~~

It's been a long 21 days!!! We're glad she's coming home.

Mira has made the move

This afternoon, Mira was moved from the PICU into the regular neuro wing of Gillette. She is still on the bipap nasal mask, but is currently not getting any supplementary oxygen. Still a little ways to go before she is home, but we are definitely closer.

Fourteen and Fifty

Today is 14 days in the PICU for Mira, and yesterday Bobbi walked on the treadmill for 50 minutes consecutively! She's aiming for an hour, and it sure seems like a reachable goal. Did I mention that she hit an hour cumulatively the other day? 40 minutes, a break, 10, a break, and another 10.

We're not sure what goal Mira's working toward, but this is so far her longest hospital stay while with us, even if you count the two stints in the spring that were separated by a week at home.

This morning Rinnah and Evania and I are going to head down and spend the day with her so Daddy can be at home for a change, and so we get a chance to be with her.

BiPAP at home (now with a Mira update)

There is so much inspiration for the imagination in the hospital!

Here is Rinnah's baby (the one who's also had g-tube surgery) on her BiPAP machine.

We got out to the grocery store this morning, and both Rinnah (age 6) and Evania (age 3.5) asked if they could use some of their money from Oma to buy a pack of gum. Sure. But then the first thing they did when they got home was to dump all the gum out into another container so they had their own BiPAP machines for their own babies.

~~~
I suppose I should let all of you  know how our real patient is doing, too, huh?

Well, she's still in the PICU, and still using her BiPAP machine, though was able to spend some good hours today with just the nose mask instead of the nose and mouth mask. She is down to 30% oxygen being supplied to her (down from 40% at the beginning of the week, and normal air is 21%) and her lung x-ray again today looked just a little bit better. The doctor was pretty excited for Dad to see her x-ray this morning! The right side looks almost perfectly clear, and the left still has more to go, but compared to the initial image from admission, there is obvious improvement.

We're planning on spending the next week in the hospital. It continues to be the smoothest hospital stay we've had because of our decision to purchase Matt a laptop computer that is sturdy enough to handle his work software, so he's able to be the one at the hospital AND still be getting some of his work done. It's not everything he'd like to be doing, but it's something, and it's more than during Mira's previous stays when I was at the hospital so he could be home working...and caring for the other eight children!!!

We are grateful for things like the promise of a meal for this Thursday that was made weeks ago before we had any idea Mira would be in the hospital, and for our pastor who ran out to the store Saturday night when we were totally out of milk...and apples...and tomatoes. And Randy and Steph - so many pieces of our Thanksgiving meal were rounded out by the freezer items you left with us earlier this fall! Yummy fresh corn, peeled and sliced apples to quick put together a pie, pickles, and I thought there was something else, too.

These times when our family is not together are tough, but every day we're glad that Mira is here with a scattered family rather than alone. Even though Mira, with her severely limited access to her world, may not necessarily know that her Daddy is there, everybody caring for her knows her Daddy is there. I know she would get great care there at Gillette regardless of her situation, but still - as an orphan she had no advocate, no one who would say something if the level of care she received was anything less than the best. Now she does have an advocate - a Daddy who loves her and knows her and who spends most of his day at her side (except for the few hours every day when he comes home for the rest of us! Gloria at bed tonight, with both of us there, was happily saying, "Daddy-Mommy. Home. Daddy-Mommy. Home." We all like having Daddy around!!)

Happy Birthday, Mira

What a way to spend your twelfth birthday...

But they do a good job at Gillette with things like birthdays. We piled everyone into the van around lunchtime to go visit Mira (after watching Wonder with Hope Kids), and the first thing we saw was a big sign on her door - you can't read it well in the photo, but above the balloons, it says, "Happy Birthday, Mira!"

 

Special  H A P P Y   B I R T H D A Y  lights were hanging from the soffit...

 And the girls hung up the notes and cards they had made for her...with medical tape because that's what was in the room!

 We had brought a balloon, but someone at Gillette had already done so, too, so now she has two.

 And even though she may not know that we all made it down there to see here, WE do, and it was so good to hold her little hand and kiss her little cheek (the tiny part that was exposed around the mask from her BiPAP machine).

She's still a pretty sick little girl (as evidenced by the fact that a week later she's still in the PICU), and I'm exhausted, so this bare bones post is all you're going to get, but I thought it was necessary to share our little birthday celebration with all of you!!

What Mira's up to

Tomorrow is Tsvetomira's birthday. We plan to get as many of us as we can (hopefully all of us!) down to see her, though I don't know how many visitors at a time she can have in the PICU, so we may be going in shifts. ;)

One big difference between this hospital stay and her previous ones is the much greater range of positioning options they have for her, thanks to the work she's been doing with her physical therapist (yay Lori!) and to the things we've been doing with her at home. Here she is propped with pillows on her back!!! That's still not something we're comfortable doing at home because of how much trouble she has with her mouth secretions, but for short periods of time, under the watchful eye of her nurse, she can! And being somewhere other than her side is really good for her lungs. 

Because of spending so many years of her life laying on one side she has a "good" lung (the one on the right that was up) and a "bad" lung (the one on the left that was down), and the pneunomia she's dealing with now is in her left/bad lung. Soooo, when she's laying on her prefered side (her left side - the side she spent most of her life on) it's really tough on that bad/sick lung. However, when she's on her other side, then her good lung isn't able to do as much work, and all she's got is the bad lung, so even though it's better for the bad lung to be up, it's really tough on her!

So, she spends some time sitting in Daddy's lap, some time on either side, and some time propped on her back like you see above, and even some time propped in a prone position - also something that she's just recently able to tolerate at all thanks to Lori.

The last day and a half they have not been giving her sedatives, which means she's a little more agitated in those positions than she was earlier in the week, but overall its a good thing, because it means they think she can handle being a little more worked up because she is still moving in the right direction.

As you can see in the photo, she's still getting breathing assistance. Before we even talk about going home, she's got to be off that machine AND weaned off oxygen, so we're certainly still looking at a stay into next week. However, the last two nights have been good enough that Matt's decided to stay home for the night tonight (being in the PICU, she has a dedicated nurse watching her, and they can call if there are any concerns), because tomorrow morning, we've got Hope Kids tickets for the whole family to see Wonder! After that we'll stop through home to pick up the two little girls and Mira's birthday balloon and make the trip downtown to see our little birthday girl.

Still in the PICU

This is the first morning that Matt's reported that Mira's doctor says she appears to have turned a corner. This morning's x-ray was the first one that showed any signs of improvement. Up until now, the only thing that looked different on each day's image was the date!

Her blood work, and the various things they're tracking there (platelets, hemoglobin, CO2) are still not looking great, but also not trending worse. They're also going to be chasing a few other things related to why she's having such trouble voiding.

At the moment, the kids and I are going to be preparing a Thanksgiving feast for just us without any help from Daddy. That means I get to grill. It was going to be a pretty low-key day anyway, as we have no family coming, and nowhere to go, but with our new plans, we're just looking forward to having DADDY come home from the hospital to eat supper with us tomorrow! He will be family enough, and we'll be grateful for that!

Many memories surrounding this week anyway...it was seven years ago today (the day before Thanksgiving) that Reuben was at Gillette for his first time as a 16 month old baby and we witnessed his first two tonic/clonic seizures and got a diagnosis of epilepsy. It was seven years ago tonight that I stood in the hallway at Gillette on my way to the bathroom (being 10 weeks pregnant with Rinnah) and realized that I was no longer afraid to adopt a child with special needs, because I had just learned that morning that I already was a mother of a child with special needs. Seven years later, here we are with a child who is in our family as a result of that moment of understanding...again spending Thanksgiving at Gillette.

(I've written more about that hospital stay and Reuben's diagnosis HERE and HERE when I first started this blog almost five years ago.)

Blood

This all started with blood a week ago - I didn't have time to post about it, but in the early hours of last Sunday morning, Mira had a doozy of a bloody nose - bad enough that we called 911. Now, it's not really so much that a bloody nose itself is cause for a 911 call. She's had them before, but this one was really running, and in order to pinch her nose to stop the continuous flow of blood, we were cutting off part of her ability to breathe, meaning her oxygen saturations were in the low 80s. In other words, not okay. And we were poised there thinking she could either stop bleeding and get better, or it will keep bleeding and her O2 could tank, so we called for help.

We and the paramedics decided to take her in a leisurely fashion in the ambulance to the ER, so Matt rode down there with her while I got the rest of the house up and off to church. I got a call from him and picked both of them up during Sunday School (nothing like a church full of people to cover for your kids while you run downtown!!)

We had no way of knowing really how much blood she had swallowed...or aspirated...so we were just to watch her through the week and take action if needed.

She wasn't great all week - very restless, and even more trouble voiding than usual, but nothing that really seemed more than we could continue to care for until yesterday. She had two more nasty bloody noses (not as bad as Sunday, and we'd learned some tricks to avoid some of the aspiration risk), but she didn't really recover from there, despite upping her respiratory routine from the green to the yellow zone, so last night we decided we needed to take her in, and it appeared to be at a good time.

She does have pneumonia, which they are treating with antibiotics, but had ANOTHER nose bleed this morning. Perhaps simplest is just to share Matt's most recent email:

We are not in a great place with Mira. Platelets are very low, so is hemoglobin. Just started a blood transfusion. ENT coming next to examine her nose and cauterize or pack to get this bleeding under control. She had another bleed this morning.

They are venting her stomach again and it is all blood.

Not a life and death situation, but she is not doing well at the moment.

Poor girl is in good Hands, but having a tough day.

Two other things

Since I'm here, I should tell you that Bobbi went down to the treadmill today with her biggest goal yet: 35 minutes!!!

Did she do it?

Well, no. She walked for 40!!! consecutive minutes on that treadmill! Yes, on the slowest speed, but that still takes some serious endurance.

AND, Reuben is now 29 minutes away from going 8 days without a seizure!!!

Another hospital run

Soooo, Mira and Dad are down at Regions ER just checking things out. It was a slow decision (as in, not the sort of emergency where you have to get right there right now. We spent all day hemming and hawing), but we're glad she's there. They've got her on oxygen and put in an IV for blood draws. Still don't know if they'll admit her or send her home, but it's where we are now, so instead of me finally finishing the (short and rather truncated) post I almost had almost ready to go, it will wait once more, and you get this instead.

Just got a text from Matt and it sounds like they want to admit her to Gillette.

Walking update

This is a post simply to attempt to satisfy many of you who want to know how Bobbi's walking is coming along! No real writing, just a bit commentary on the videos.

The pool is amazing. When you're up to your armpits in water, you only weigh about 20% of your normal weight, AND have the benefit of the water itself slowing down the effects of gravity. It's ideal for learning. Bobbi's therapist said to me once (when she was working in the pool with Krassi) that every child that she's gotten walking independently in the pool she has also been able to help do at least some independent walking on land. Krassi didn't get to the point. Bogomila, however, appears to be in the other category:



Bobbi gets down to the treadmill almost every day that she doesn't have physical therapy. I took this video a little over a week ago. She walks at .6 mph, which is the slowest the treadmill goes. This summer, that was too fast for her. She's since worked herself up to 5, 10, and sometimes even 15 or 20 minutes at a time. Since this video was taken, she's been pushing herself, and usually walking at .8 mph, and twice now pushing for all she's worth at 1.0 mph! That's a big increase! Her time isn't as long (yet) at those speeds, but it's exciting to see her strength and endurance increasing, and her comfort level with the motor planning involved in walking becoming more natural.



She does therapy in the pool once a week, and twice a week on land at the therapy center (also known as my second home.) They do a wide range of things there: lots of stretching, muscle isolation (she can now make tiny wiggles with the toes on her right foot!!!) and a variety of strengthening and balancing exercises.

The following are a few from today. I was especially proud of the one where she takes a few steps with minimal support from Lori and sits down in her chair.

So proud

Krassi wowed me tonight with this:

I realize it's a little hard to see in the photo, but that's HIS OWN hand holding the bear cup for drinking!!! We'd been playing/working for a few minutes with a trial augmented speech device for him that is either touch activated OR eye-gaze activated, and are beginning with a field of two choices, both intended to be rewarding to build the cause and effect in his mind. Tonight's options were drink and jello. I was anticipating jello every time, but after the first bite, he told me drink (with his hand). So I gave him the drink, not sure if that's what he really wanted, and not only did he drink it, but he took it from me and tried to put it back in by himself when I was done!

He needed a bit of guidance from me, but he DID IT!!!

Doesn't he look like such a big boy taking care of feeding himself!

It's a major deal for a boy who came home four years ago channeling all of his angst and anxiety and anger into his mealtimes. Just getting him to accept being fed without a major breakdown was a big deal at the beginning. The last months have moved to a much wider variety of textures, including larger soft chunks of things in his food that he's able to chew and manage safely with his tongue. Seeing him giving himself a drink tonight was pretty delightful. Even his older sister was excited and proud of him!

[As a side note there, one thing I've admired about Bogomila is that from the start, she has an intense loyalty to her family. Yes, there are some who annoy her more than others, but she has a definite sense of solidarity with her brothers and sisters, and seems to have a unique connection and almost sense of camaraderie with Krassimir and Mira because of the shared elements of their history, and her sensitivity toward them, and her ability to see them as precious persons with feelings and rights and value is really beautiful.]

Seventy-one

Bobbi's birthday is today!!! Her first birthday home with her family. Although there was some Bulgaria-sickness, the day was in general a great success, including some fun messages via Facebook from some of the people she misses the most from her old home.

We started with special breakfast cereal (chocolate bunnies), and a few presents from family members, then shared brownies with her therapists (Lori's birthday is tomorrow!) and spent the afternoon baking cakes in preparation for her big party tomorrow.

Way back when we first met her, we'd talked about restaurants, and told her we don't really go out to eat much, but that sometimes for birthdays or something special like that we will, so she was all ready to go out tonight.

There's a pretty decent Mexican restaurant very close to our house. Rinnah left today (with my mom) to visit my sister and family in England, so we sent Owen on his bike, and the rest of us fit in Bigger Blue. Amazingly, we had a relatively peaceful dinner! The photos aren't so great, but you can see all of us...

 ...AND, the fancy birthday hat they brought with Bobbi's complimentary dessert and Happy Birthday song!

(And where did the title of this post come from? Well, it's Bobbi's way of dealing with the repeated question from Matt's mom: Oh, it's your birthday? Well, how old are you? Bobbi: Fifty-five. or Fifty-eight. or Eighty-nine. or One hundred twenty. but her favorite was Seventy-one. Close to seventeen, but just different enough to make the repetition something humorous, and thus tolerable. We're so proud of the way she is learning patience!)

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!

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.

4 years ago today...

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.

* Cling to Christ

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.