Three months closer to her dream

I've shared before how Bogomila dreams of walking someday.

We (meaning everyone involved with her care - her doctor at Gillette, her physical therapist, we as her family), have yet to really know what is and is not going to be possible for her, so all goals and plans are held loosely, but what we ARE doing is working diligently with her to achieve that goal.

Time will tell if she will ever walk completely independently, or with some combination of forearm crutches or a walker, and if she will walk only in short bursts of time, or will have endurance for longer stretches, but what we know right now is that we're just moving forward!

This past week's pool therapy session was mind-blowing! It's like something in the motor-planning clicked for her, and she was walking back and forth across the pool, with her therapist near her, but not touching her - just Bogomila walking! She'd get to one side, turn around, and say, "A-GAIN." Over and over and over. I had forgotten that day to make sure her wheelchair was in the trunk of the car, so when we arrived at the pool, we realized her only option was to walk in with me supporting her from behind, or for me to carry her! Thankfully she walked. But I wasn't sure how in the world I was going to get her back OUT to the car after! Usually she's pretty wiped out after a pool therapy session, without having walked in, and with not nearly the number of independent steps she had put in while actually in the pool. I found someone from the office who found me a rolling office chair to get us from the locker room to the door. But that girl wasn't going to go for that! She was determined to walk out, and walk out she did. (With me helping her again. But still...)

With that as background for what's next, I'll catch up to this weekend when we had our annual Glewwe Family Reunion in a (large) rented cabin in southern MN, starting on the day that marked three months that our girls have been home with us. The weather was a little chilly, so most people, even most of the kids, stayed inside, but on Saturday afternoon Bogomila wanted to go out and get some exercise. (There's a lot of junk food at the cabin!!) We started on the path along the river with her propelling her chair and me and Evania walking along side.

Coming up one slight rise in the path after we'd gone roughly one-third of a mile, she caught her right thumb twice on her chair, and had a raw spot that was going to make wheeling not really feasible. Faced with the choice of having me push her for the rest of our trek, she decided she wanted to WALK!

We left the chair right there on the path (figuring you've got to be quite the creep to steal a wheelchair!! and figuring we wouldn't end up going that far from it anyway) and I took my position behind her and we began walking.

Check out how far we got!! If you look closely, you can see the wheelchair way in the background.

She made it that whole way without stopping for a break!!!

And after I took the photo and walked back to her, ready to pick her up and help her walk back to her chair, she fires back at me, "More!"

So we did!

 Phew! NOW look at how far away the wheelchair is!!! Time for a little more serious rest this time.

 And was that enough? Nope. "More walk!"

It was time to teach Evania how to use the camera. One hundred or so pictures later, we ended up with some pretty good ones!

"One, two, three, up!"

We walked, and walked, and walked, and walked. Slowly, slowly, one foot in front of the other, stopping to rest as needed.

 After a while we came upon a gravel path heading toward the Root River.

 I will only share with you one of the half dozen or more photos of gravel that Evania took. You're welcome. But I thought one was worth sharing because walking downhill on gravel is different than walking on smooth, level ground.

 How much do you want to bet this girl has never walked down a sloping gravel path onto a sandy beach and thrown rocks into the river with her little sister?

 

Just as we were finishing up on the beach, my niece (a few years older than Bogomila) and her fiance joined up with us. The lone wheelchair back a few hundred yards back on the main trail had confused them a little bit!😉

They joined us for part of the walk back up the trail before heading on back to the cabin with Evania, who had not imagined this would be a 2.5 hour walk when she agreed to come along!

That oldest girl of mine's legs were tired beyond belief (well, her left leg was still going, but the weaker right leg was just about done. "Защо, Мамо?" (Why, Mom?) But did that stop her? Nope. My arms were burning both from the distance, and because she was leaning more heavily on me than when we had started. We were taking very frequent breaks, but my girl would not give up. She wanted to make it back to where she had left the chair, and you know what? She did.

Time will tell where her abilities will end up, and how much therapy and surgery it takes for her to get there, but I can tell you one thing - she has the ability to exert great determination to work toward something that really matters to her! That inner drive she has gives me great confidence that her dream is going to be within her reach.

Thanks, Evania, for taking the photos!! This self-portrait is one of my favorites of the ones she took!

Daddy: Surgeon

One thing we certainly don't need around here is more stuff. But, since children don't count as "stuff" we decided to go ahead and get both Leah and Rinnah a new doll...with a hard body...so we could do g-tube surgery!

Oh, the joy of those last days before the package arrived in the mail! Both girls (and Evania) were gathering their supplies, packing their bags for their international "flight," and then spent a whole day pretending to be in-country driving to pick up their new babies. (We're dismissing the small detail that international adoption and newborn adoption just don't go together.)

Soon after arriving "home," both girls' new daughters were hospitalized and scheduled for surgery. Surgeon Dad, masked and ready, prepared just the right size drill bit.

 Nurse Mom made the mark for the incision, and away we went.

 At this hospital, not only does Mom get to watch the surgical procedure, but she also gets to be the one to fill the balloon.

 Here's Rinnah with her friend Hope giving Rinnah's baby her first feeding post-surgery.

 And Leah with her baby Irina, carefully turning the mic-key button so it heals properly.

Abundance

In my pile of seventeen or so drafts of posts waiting to be written or finished, is one that is simply a list of the various and copious ways we've seen God providing for our needs since just January. I still don't have time to do it justice (and the list keeps growing!) so I'm going to write this one as a sort of "teaser" in hopes that I'll get to the real one soon.

So, last Tuesday I ran into a friend at the library. It was the day we had Mira along. (Oh, wait! I don't think I got to share about that, either! Matt was gone on one of our regular library days, so we decided to do it anyway with Mira along. So, here she is on her first trip to the library:

She slept right through it!) Anyway, my friend said she and someone else we know had been wondering if there were any practical ways they could help us out. First of all, it is so good to know people are still thinking about things like that even after the initial rush of travel and hospital stay, etc. But, as I told her, even though my days are full to overflowing, there are very few parts to my days that I can pass off to someone else. "Here - Mira's got her first consult with the endocrinologist - can you run her to that so I can stay home and do laundry?" Nope. Not going to happen. But having her offer, and knowing it was a genuine offer, still meant a lot.

Then came Friday, and Matt came home from his meeting with the architect he contracts with carrying a grocery bag full of frozen soup, bread, cookies, and something else. How wonderful to know that supper for the next day was covered and I was able to take some of the extra time to pick off a number of little tasks that had been patiently waiting for weeks. And that got me thinking, and I sent my friend an email. Would you be able to occasionally prepare a meal for us? I have some regularly occurring days that are cramped for time where a meal would make a big difference, and some occasional days (like Mira's tentative May 8th surgery) when I just won't be home to put something together.

She emailed me back the next morning, joyfully saying that, yes! she would bring a meal that Tuesday, and cover the surgery day as well.

So, Friday we were given a meal, Saturday we ate it, Sunday brought the promise of two more, and then Monday morning Matt passed me his phone because there were three message on it that he thought were for me. Message one: a lady from church saying she picked up a great deal on pork and was going to make us pulled pork and put together a few other things for a meal and deliver it Tuesday around lunch time so I could heat it up whenever made the most sense. Message two: another lady from church reminding me about how she'd emailed a few weeks ago saying a number of people were getting together to cut up fruit and asking if we'd like any. (Yes! we eat a lot of apples and bananas because cutting enough fruit that takes more prep than that takes a lot of time for our crew!) She also mentioned in the message that they were going to bread some chicken and throw that in the oven and bring it all over around 5:00 for supper that night. Message three: some automated thing from the pharmacy. No food. 😁

The number of times that God has orchestrated clusters of provision like this throughout this past year just continues to amaze me. We've been through plenty of times in our life where God provides, but waits until what appears to be the last minute before revealing what He's had planned all along, and giving us just enough to keep going so we can keep trusting.

This time around it's as though as soon as we're aware of a need, he pours it out to overflowing, and these clusters (all food!!!) just make it that much more evident to us that he's making a point: if having food prepared is going to equip you to better do what you need to do, Andrea, then you're going to have it! Whatever it is that you need to do the work I've laid out before you is going to be provided to you. So do the work.

A repeat from Easter, because it's still relevant:

Therefore, my beloved brethren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil is not in vain in the Lord.

~1 Corinthians 15:58 

Learning English

Bogomila continues to make steady progress with her English. We purchased a 6-month subscription to Rosetta Stone, which has been a great learning tool for her, and is the primary part of her home school education.

She delighted us after supper the other night by understanding her first English play on words.

I scream
You scream
We all scream for
ICE CREAM! 
 

Mission: Walk!

Bogomila came home to us with one dream: she wants to be able to walk someday!

While that's a big dream for someone who's been in a wheelchair with minimal intervention for sixteen years, having the dream puts motivation behind what we can do therapeutically for her here. The *wanting* to is something we can't supply, but she's already done that!

It's likely too soon to make any solid long-term judgements about what she will or will not be able to achieve in relation to this goal. We know that much of what is possible has been lost through years of nothing, or at best, not enough, having been done, but we also know there is a lot of potential in that girl!

It has been incredibly exciting to watch the changes in her abilities in the mere weeks that she's been doing therapy. Krassimir's very skilled therapist incredibly had an opening that overlapped with when Reuben and Krassimir already had to be at the therapy center right when Bogomila got home, so she was able to start therapy once a week before Mira was even out of the hospital. She has now moved up to three times a week, twice at the therapy center and once in the pool. This is a lot of running around. We have five different therapy appointments throughout the week: Reuben for 1.5 hours on Monday afternoon, a two hour visit Tuesday mornings with Mira and Krassi, then home for lunch, and back again with Reuben and Bogomila Tuesday afternoons. Wednesday she's at the pool after lunch. Thursday Matt takes Bogomila, Krassimir, and Reuben back to the center (because they use Big Blue, and I don't easily get Bogomila in and out of Big Blue. Anyway, it's a nice chance for Matt to see what they're doing, too!) Add in a few other appointments, or grocery shopping!, and suddenly days when I'm home for the whole day are few and far between.

BUT, the running around is worth it when you see the progress that she is making!!

Thank you, to Bogomila, for happily agreeing to let me share these, and also to Lori for her permission to share videos featuring her at work as well. 😊

Here's one of the earliest videos I have. (from March 7)



Look at the difference two weeks later, both in the quality of her walking, and also how Lori's having her start sitting down, and get up. (from March 21)




But that's nothing compared to this!!



And this: (both of these videos are from April 4)



The way she pops up is fantastic, and shows not only how much stronger she's getting, but I also love her, "Again!" She had been doing this earlier in her therapy session, while I was with Reuben, so these two videos were taken at the end of her session, when she'd already been working hard for almost an hour, and was getting fatigued, but she STILL was able to show me, and multiple times. Just think what another 3 or 6 months will bring!!

The pool therapy has been another amazing tool. The warm water environment does two things - one, it slows down the effects of gravity, giving Bogomila's brain the time it needs to figure out the processes for things that many of us take for granted - how do you shift your weight to stay upright when something pushes you from one side? How do you get your feet back under you and weight bearing when you've lost your footing? And two, it reduces her weight, making her able to get in more reps of the rhythm of walking than she can do on land.

Here is a short video from her first time in the pool. (from March 15) (Note - the YMCA does not allow videos or photos in their pool area, but I spoke with someone in the office and was given permission to do so for Bogomila as long as the pool population is sparse, and I only get her (and Lori) in the image.)


Not bad, huh? You can hear Lori counting up to eight independent steps!

Well, less than a month later (April 12), she was walking laps across the pool, back and forth, back and forth, using pool noodles for a bit of help with her balance, but even so, that's a MUCH longer distance!! This clip is from the end of one of her laps.


One last one I wanted to share, and then I've got to get this up so it doesn't have to sit for another day (or five).

This one is again, at the end of a session (on April 15), but shows how much her balance has improved! Lori had her on the ball near the beginning of the time she was working with her, and she needed significant assistance to stay on it. I've noticed this, too, just with riding next to her in the car. At the beginning, I would need to reach out a hand to hold her up when we went around turns, but now she has both the core strength and some of the intuition to keep herself upright. It's still not an automatic thing for her like it is for those of us who are used to these kinds of movements, but she can do it now, where she couldn't not that long ago! The other thing to watch in this video is her use of both hands to catch the ball. The rotation of her right arm has improved so that she can turn her hand to put both hands together to catch. We're looking forward to having her start occupational therapy, and get even more focused attention on those fine motor movements.


Here's one last fun photo to end with. Bogomila had been walking down the hall pushing her own wheelchair (with no ballast, which means she can't lean too much or it will tip...except that Lori's there to catch her), and was exhausted!!! Lori helped her over to sit and rest for a moment, and was teasing, singing "rock a bye, baby." Bogomila thought it was hilarious...and so did the rest of us! How glad we are to have people like Lori working with our children!

Death is swallowed up in Victory!

"... and if Christ has not been raised, your faith is worthless; you are still in your sins...If we have hoped in Christ in this life only, we are of all men most to be pitied. But now Christ has been raised from the dead...'Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?' The sting of death is sin, and the power of sin is the law; but thanks be to God, who gives us the victory through our Lord Jesus Christ.

Therefore, my beloved brethren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil is not in vain in the Lord." 
~ 1 Corinthians 15:17, 19-20, 54-58

keeping it real

Yes, there are many times when my little girls amaze me with their patience and ability to ride it out [mostly] flawlessly through multiple long medical appointments, but there are also times when it doesn't work that way.

 Yes, that's Gloria, pulling herself up off the floor where she's been sobbing for the last 15 minutes. This also happened to be the lab visit where we just went to our primary clinic to avoid the slightly longer drive and more complicated parking and arrival scenario of going to Gillette downtown St. Paul. We DID get a great blood draw (from the fourth person who looked at her, and finally decided she was brave enough to go for it!) but completely botched the urine sample. While we were trying to strategize the best way to put the little collection baggie in place, Mira decided it was time to go. So go she did, soaking the chux, her pants, her socks, running off the chux onto the memory foam cushion. Oh, what a mess. So there went that attempt. We were sent home with a baggie on, and a few extras in a paper lunch bag. Mira proceeded to have a bowel movement on the next three bags, and by the end of the next day, we'd only managed to collect a total of 15 ml. That's not quite the 40 they told us to aim for. Thankfully a call to her doctor this morning (who ordered the labs) said that they could work with the 15ml, so we're finally done with that.

To be completely fair, I should also mention that Gloria also managed to keep up the crying during almost the entirety of Mira's "bath" upon arriving home (because there's nothing like being soaked in your own urine to prompt a bath around here! Evania did the same this morning with an uncharacteristic accident while standing right next to the toilet. Nothing like a bubble bath to stop the sobbing!) 

Sometime the simple visits end up being the most complicated ones!! Phew. One more done.

Feeding Frenzy

Turns out feeding your child via a g-tube is the thing to do around here! After Mira had her first tube replacement, we ended up with not only the used mic-key button, but also the unused backup that we had which is now .5cm too short for her, so is not something we have any use for.

This means that two of our lucky girls are now in a position to set a date for their own baby's g-tube surgery! In the meantime, they've all been collecting their supplies - used extension tubes, and syringes in sizes that we don't use, or are otherwise not needed (some of them are worn so that the markings are no longer visible, which is not so useful for Mira, but they're still great for delivering "meds" to a doll!)

Evania's feeding syringe is the largest of the "small size" ones that I have, so even when fully extended, her short, fat, little fingers can still reach!

Notice Gloria's hand is on the plunger of syringe Leah is using. Love how nonchalantly she munches on her big apple chunk while "helping" Leah "feed" her baby.

Apparently even rabbits can be tubies!

The stories surrounding these "children" of theirs are just as varied as the creative solutions they have for adapting what they can find around the house to meet their needs. (Leah has a suction machine made out of a bright pink shoelace for one of her daughters!)

The girls, too, are still very much involved in the real care-giving activities that happen around here on a daily basis. I am so grateful that the work involved in caring for Mira is something that is helping us to grow closer together.

a morning errand

After nearly sixty miles (round trip) averaging just over 24 miles per gallon (thank you, Big Blue), and a two hour wait in the waiting room (which included a fluke fall with a bloody mouth on poor Gloria - there was blood all over her shirt sleeve and the bathroom floor before we were done! Mouths can be like that), we now have a fully repaired and functional temporary chair for Mira.

The technicians who worked on replacing the various parts that were damaged said they could essentially reenact what happened when the chair was offloaded from the airplane just from looking at the location and angle of the effects of the impact. The airline paid for the replacement parts and the repair work, and now we have a chair that is not only safer for Mira, but also much easier to maneuver while we wait for her "real" chair to come. We are also glad to be able to have this one either as a backup for now, for Mira to grow into, or as something we could give to someone else in a situation similar to ours.

As usual, I had my three troopers along. A cheese stick each for the ride home makes for a special treat.

Ooooh - camera smile!

The three girls all wanted to sit next to each other, so we put Evania into Krassimir's seat (there's still something a little weird about being able to have my two year old and twelve year old similar enough in size that they can easily use the same car seat!), and we sang along (loudly) to Bible verse songs* all the way there and back home.

* We have a musically talented church, and they have put together a CD of the memory verses that go with the kids' curriculum that our church uses for Sunday School set to original music. It's a great way to memorize, not only for the kids, but for me, too!

Cats

A certain daughter of ours was not so sure about cats when we first met her in September, but after living with them for a few weeks, she's (thankfully!) grown to not only tolerate having them around, but to actually kind of enjoy them, too!

Three sisters under the table.

And one stayed there to visit for a bit with the cat!

When I get the time, Bogomila has also given her okay for me to post a bit about the amazing things she's been doing with her physical therapist. So keep watching, and hopefully in the next few days I'll have something to share!

Reuben the plumber [by Matt]

This weekend while Andrea's parents were in town, I had her dad help me tackle a project that has been on my list since the day we turned the water on in the addition, but that I had not gotten to in the past 2+ years.

There were a number of things about the west addition to our home that were a first for me. Plumbing was one of those things. Shortly after my Mom moved in, you may remember a post about water leaking out of the light switch in the hall and having to cut a hole in the ceiling and re-do some of the waste piping below my Mom's toilet. [Can't find the post right now - will link to it if/when we find it!]

Well, there was another plumbing issue in my Mom's bathroom. Namely that the hot water in her bath tub never ran at more than a trickle. Cold water was okay and hot and cold water were both fine at her sink. But for some unknown reason, the hot never worked well in her tub. Since she is not usually in a rush, we would just plan plenty of time to run the water and it was OK.

So this weekend we pulled the faucet apart. We had thought that maybe something was wrong with the cartridge, so we got that off and then tried running hot and cold water separately to see if there was a clog in the cartridge. Nope. We were really hoping it was the cartridge as that would have been an easy fix. Now we were wondering if the pex piping had gotten kinked somewhere or who knows what.

With the cartridge out, I did notice that the check valve on the hot water was less open than the check valve on the cold water side. We decided to pull those out to see if there was something clogging up behind the check valves. Here is what we found.

This is the back-side of the check valve. Notice anything out of the ordinary?

In total, there were about 5 shards of wood jammed into the check valves. Mostly on the hot side, but a couple on the cold water side.

Now we get to the heading for the post. I can't prove it, but I am pretty sure that my little "bum, bum" addition helper Reuben was behind those wood shards getting into the pipes. He was often out helping me and it would be just like him to pick up pieces of wood and stick them into the open ends of the roughed-in pipes. Then when everything was hooked up and we turned the water on, they got pushed into the check valves where they have been sitting ever since. Thanks Reuben.

It ended up being a simple fix after all and it is very nice to have normal pressure and volume on the hot water in my Mom's tub after having her live with it for two and a half years.

This was apparently the weekend for working on west addition projects. On Saturday I cleaned up the last pallet of a few siding materials that had been sitting in our front yard since we did the addition. That was a very good feeling.

Cholesteatoma

Mira's going to likely have many interesting medical updates as the life of this blog progresses. This week involves two significant ones. Because this is the new "normal" of our life, I do not often consciously comprehend the gravity of what has been done to our daughter through doing nothing, but this week has brought it to my attention again with a new freshness.

Backtracking a little bit, when Mira had her two-week followup appointment after her g-tube surgery, the doctor commented that the tube was starting to get a bit tight, and we'd probably move up a size when she had her first change. [G-tubes are changed every 3-4 months. They've found that if you go longer than 6 months, the chances of failure go up, so the recommendation is to change it out soon enough that you just never have issues. The first change is done by a doctor, who will make sure everything has healed up properly, and after that appointment, the family can choose to do the change themselves, or to have a doctor do it.] After another two weeks, we were noticing that the tube was seeming really tight. We knew by this time, too, that she was gaining a fair amount of weight - from 25 pounds to nearly 30 pounds in six weeks! That's a 20% increase. I don't even gain weight that quickly when I'm pregnant!

We are in no way experts at g-tubes, but knew that when we had only two positions, 3-o'clock or 9-o'clock, tucked into the folds of her tummy (yes, she has a tummy!!) that we were likely NOT going to make it until June 5th when she was scheduled for her first change.

Yes. We were scheduled to go in on June 5th!!! I called the doctor's office and explained the situation to the nurse.

Yes, I know that you expect children to gain some weight when a g-tube is put in, but I'm guessing you haven't dealt with very many 25 pound 11-year-old children getting a g-tube AND good formula for the first time! We really don't know what "too tight" is, but we don't think she's going to make it until June without a longer stem on her g-tube.*

They agreed to have us come in this past Monday to take a look at it and assess if it needed to be changed.

Um. Yes.

The nurse had checked the size of her tube before calling the doctor in so she could have an identical one ready, because apparently, that's typical(?) Mira had a 14 french-1.5cm (french is the size of the tube, the cm is the length of the stem). The doctor took one look and asked the nurse to bring a 14 fr-2cm.

We're glad we didn't wait two more months. Even though her weight gain is slowing down a bit (which I think is also healthy - keep going, yes, but at a slower pace!) the tube appears to be much more comfortable for her when we have to clean it and move it.

Then there's the second one. This was one of those weeks when I get to pack up twice to head down to Gillette. The valet parking attendants have started asking about the kids when I don't have the right variety of them along with me! (We have to use valet parking at the main hospital entrance because Big Blue doesn't fit in the ramp, and Mira's chair doesn't fit in Little Blue (the Jetta). Thankfully, Gillette has arrangements such that we pay the same amount for parking regardless of where we park or who parks the vehicle.)

Thursday's appointment was with an ear/nose/throat doctor. Mira's complex care doctor (see the end of this post) wanted to have her checked out before her dental surgery so just in case they wanted to put ear tubes in, they could do it with an extra 15 minutes under anesthesia tacked onto the dental surgery.

Turns out it's going to be more than a 15 minute affair.

The ENT doctor took one quick look in one of Mira's ears, and said we were going to move to the microscope room. After some variety of ear wax removal procedures, he confirmed what he had suspected upon his first glance into that first ear.

Tsvetomira has a chloesteatoma in both of her ears.

What is that, you may wonder? Well, from this site, we read:

• Cholesteatoma is an uncommon condition where a cyst-like growth develops in the ear. It can be a birth defect (congenital problem) but usually occurs as a complication of chronic (long-standing) ear infection.

 Oof. We were told that our little girl has a history of recurring ear infections, and, most likely, particularly during the first seven years of her life, they were not properly treated. As a result of nothing being done, she now has a condition that at a minimum can destroy her hearing, and at worst, as her ENT suspects, can cause much more serious damage as it grows toward her brain.

What Mira needs is not a 15 minute surgery to insert tubes, but hours of sedation for an ABR (Auditory Brainstem Response test) and a CT scan, and eventually, the surgical removal of the cholesteatoma. Tubes may be part of that, but are obviously just a tiny bit of the whole picture.

We do not know yet when this surgery will be scheduled. The date of her dental surgery is not an option for either of the ENT doctors that we are connected to, so it will end up being a separate visit, but I'm guessing it's something that will be done sooner rather than later.

~~~~~~~~~~~~~~~~~

Scenarios like these are a fresh reminder to me that often the excuse we may hear from our children, "I didn't do anything!" is a tremendous part of the problem. Doing nothing can be just as criminal as doing something.

I can not count the times I have cried over what has been taken away from our adopted children because nothing was done to/for them. As far as I know, none of them have been victims of active abuse, but they have all suffered greatly, and great loss, much of which is irrecoverable, because of passive abuse. So much has been robbed from these children of mine because there were people who did nothing. At this point I do not feel it is my place, nor is it beneficial, to look back and decide if this was done out of selfishness, spite, necessity (no money for proper formula, for example), or simply just ignorance. That is in the past, and I can't change the past, but in looking at the now and forward, it does become an important question. 

Where am *I* doing nothing when I ought to be doing something? Where are *you* doing nothing when you ought to be doing something? 

Then He will answer them, ‘Truly I say to you, to the extent that you did not do it to one of the least of these, you did not do it to Me.’

Matthew 25:45 

Doing nothing is actually still choosing something. When I first saw Bogomila's picture and her brief bio and mentioned it to Matt before bed, he rolled over and went to sleep. When he saw her photo the next morning, however, something clicked and he recognized that here he was, looking a real, live person in the face, with the power to do something, or to turn away and do nothing. At that moment, either option was a choice. Choosing to do nothing was, in actuality, doing something. Choosing to do nothing was saying to this child, "I'm sorry. It would be too hard/expensive/whatever to make you my daughter, so I will just let you turn 16 and become too old to be adopted and spend the rest of your life in an Eastern European mental institution because your legs don't work properly." And Matt knew that doing nothing was not what was right, so we did something instead. Just a simple email inquiring about what country she was in - at that point, we knew nothing (beyond that she was likely not African or East Asian from her photo.) One simple step, but it was something other than nothing. Learning that she was indeed in Bulgaria, the country we were already preparing to begin an adoption in with Tsvetomira meant we were at another junction. This was not an easy "no." Little step by little step of doing something instead of nothing, and here we are, a little over a year later, with our eldest daughter home with us.

That's just one example. And I can confidently say Matt made the right choice, but I think it's important to all of us to keep looking forward, looking at our now, and watching for where we may be doing nothing in a situation where our inaction, even if the outcome is not as criminal as some of the possibilities, is still a choice that we will be held accountable for.

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 *What is a g-tube? It's simply a little access point that goes through the belly into the stomach. The stomach is tacked onto the abdominal wall in four places, and as it heals it grows onto the wall, so it's right up close, and the tube works like an earring with a "button" that the feeding tube hooks onto on the outside, and an inflatable balloon on the inside that, like an earring back, keeps the thing from falling out.

(from http://pedsurg.ucsf.edu/media/85846/main_img.gif)

Replacing the tube is simply a matter of deflating the balloon, pulling it out, putting the new one in, and inflating that balloon. Easy-peasy. (Says the woman who's watched it done once, so now thinks she knows everything she needs to know. We'll see how the first change we do on our own goes! But I think it won't be too bad.)

Got one!!

After weeks of wanting to, but never having close to the right opportunity, we got our chance to take a new family photograph today, and...it worked!!! We got a good one! Any one of you who has children (I don't care how many - one is enough for this!) knows how hard it can be to get a decent family photograph.

First, the out-take (which, honestly, is still better than some we've tried!)

Thank you, Owen, for the crossed eyes. Mira looks like she's rolling hers at him. Brothers. Sheesh!! Krassi, where are you? Gloria? Look at the camera!

And now the good one. Behold - the Glewwe Family in April of 2017:

Our "dress code" was simple. A solid-colored short-sleeve T-shirt and solid colored pants. We were flexible, and had some stripes, sparkles, and words, and some varied sleeve lengths, and even a jumper, but overall I think we pulled it off. I think my favorite touch (which is even harder to see in the good one, but *we* know it's there) is that Bogomila is wearing a pink "Minnesota" shirt, and Owen is wearing a blue shirt with the word LOVE on it in the shape of Bulgaria.

Pronunciation

Just had a great comment/question from someone reading one of my previous posts, and thought it was worth answering as a post of its own:

How do we pronounce your eldest daughters name correctly?

Good question.😃

The first two syllables rhyme with "go."  Bo-go

Next is "me" (and this is the syllable the accent is on). Bo-go-ME

And then, the trick - most of the time, the letter "l" is pronounced more like our "w." (Not all of the time, but most of the time this is the case.) So.....

Bo-go-ME-wah

And she goes by Bogomila. No nicknames for her! (Though she will kindly accept just "Bo" from Reuben, and that's also what we're coaching Gloria on.)

And I know I've shared this before, but her name also has a beautiful meaning: Beloved by God. Probably half of the Bulgarian people we have met recently have commented on what a beautiful name she has, and have asked if I knew what it meant.

Yes, we do, and we believe it to be true.

Helpers

I'm not sure what's more beautiful: the little vase of blue flowers the girls picked for me yesterday...

 ...or the spring weather that accompanies it outside the window! The grass is starting to green up, and though the trees have not budded, they're getting close. Although I'm not sure how much time I'll have this summer, I'm really looking forward to getting some time out in my gardens!

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People will often tell me they "don't know how I do it." Well, the answer to that is two-fold. One, I have many helpers.

I walked into the computer room the other day to find this:

 There's a basket of clean laundry and a few children. One of them is right next to the laundry basket, and, it turns out, she is folding laundry!!

 Not just any laundry, though. She's digging through and folding and stacking the little cloths we keep under Mira's cheek to catch her drool. We go through many of these every day!

 All on her own, that two-year old (in all fairness, she's now mere weeks away from three years old) folded, stacked, and put away the little pile of pink.

And she's happy to be a part of it.

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  "Hey Mira, the phone's for you!"

"Here. I can hold it for you, since your range of motion doesn't quite allow for that just yet. Don't worry. I've got you covered, big sis."

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Last week at church an older friend approached me and asked if she could come over someday and clean for me. Clean what? Well, anything. So I said yes. Today was the day, and she dusted her way through at least four rooms of the house, and there's nothing like someone trying to dust your shelves to get the right momentum going to get some of those little random things that tend to collect put away, so I did. It was also a GREAT time to suggest to the three kids with desks that they clean off their desks, so that looks much better as well. 

A few weeks ago we had a similar offer from someone else at church, that one for cleaning our bathrooms. We had not planned to show her the bathroom in the basement (very much a 1930s farmhouse basement bathroom!), but she found that one, too, the brave woman!

I am learning to accept help when it's offered. Not too many years ago I would get frustrated sometimes when Matt would take a few minutes to switch laundry, thinking it suggested that I couldn't handle it on my own. I'm learning that I need help, and to humble myself enough to say, "yes!" when someone offers. A good friend gave me some good advice when we were in the process of adopting Krassimir, and it has stuck with me: when you do not ask for help, or do not accept help that is offered, you are robbing the body of Christ of the opportunity to serve.

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And, if you'll remember, the answer to the "how do you do it?" question is two-fold. Here's the second half.

Much of it just doesn't get done!

And that's mostly okay. Dust? Why, I haven't dusted in so long I can't remember the last time I did. I know that some of the house was dusted when my mom and "Oma Sue" (as the kids call her) watched our children last September when Matt, Gloria and I were in Bulgaria.

Cleaning the bathroom? Why, we do that on a more reactive than proactive basis. And since we have enough events to "react" to, the bathroom stays clean enough to be healthy.

When I was in the hospital with Mira, Matt and I had a late-night phone conversation, during which we both noted all of the things that were falling through the cracks. He made a wise remark. As long as none of the children fall through the cracks during this crazy time, we'll call it good. And none of them did, so it was good.

We may run things a little bit differently around here, but that's part of how we make it work. 

To loosely* quote Bogomila from a conversation we had last night while she was petting the cat in her room before bed, "Crazy family, crazy cats, crazy Bogomila." It works.

*Because anything that comes through google translate is "loose" at best!

Here and there

All in a big heap, here's some little bits about life around here. [NOTE: this is not a new post - just a re-copied version of the one with the same title - I tried to add a video and somehow deleted the whole thing. Thankfully I had the original up in another browser, and I type fast! So instead of a new post tonight (April 3), you get one 10-second video added to this same old one. But I did start a new post. Now you can watch how many days it takes for me to get it up!]

I have ten minutes - as much time as it takes Matt to give Mira her neb - and then to bed!

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We were up late tonight, as tonight was the night we were invited over for dinner at our new (Bulgarian) friends' house. What an amazing spread!! Two different salads (one Shopska and one which is like the Tarator soup Bogomila has me make, but it's much thicker, so is more like a salad), then stuffed peppers, moussaka, fresh fruit, Bulgarian chocolates and dessert (Swedish almond cake from IKEA! 😃 Because we are in Minnesota, after all). Amazing food, delightful company, and *wonderful* for Bogomila to get to talk for a few hours to people who speak her language...and ours!

But staying up late is hard work. Gloria fell asleep midway through the night in their sons' crib (he's a bit older than she is, and was okay staying up with the older kids), and by the time we got home, Evania was out cold. We set her on the chair while we put the others to bed, and she didn't move a muscle.

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On the topic of sleep, Owen and Krassimir slept in their very own bedroom last night for the first time since late January. The room is not done yet, but Matt took enough time off from his work Friday morning to get Owen's bed platform cut and installed and the last bits of carpet in so Krassi's bed could be moved in.

Leka Nosht, Krassi!

Matt, giving Owen's bed cubby a test run. The light's a little bright when you're laying down! But it should be just right for sitting up and reading.

And Owen, trying it out while getting his covers settled. As you can see, the bookshelves are not in yet, but that can happen AFTER the boys are in the room.

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And with that, Matt's done with her neb, so I'm warpping up and heading to bed!!! Once again, just a simple little post, but getting it done and up takes time, and sometimes there are other things (like sleep!) that I choose to do with my extra time.

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Oh - guess what - Mira just pulled her new bedtime routine of filling a very dirty diaper while being held upright for her neb! (Being vertical is so good for humans.) Which means...a few more minutes before we head up.

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Take a look at that first toenail. Do you think there's been a change in nutrition in Mira's not-so-distant past? There are many good things to say about the changes in her orphanage since the new director began there a few years ago. But even with good changes, as a friend said, the institution has gone from a -50 to a -10. At a most basic level, they are doing the best they can with limited funds, and those limited funds don't allow for the kind of formula that Mira is getting here now through her g-tube. Apparently, the new formula (plus, just maybe, the comfort of living in your own home with your own family who loves you???) is good for her in more ways than just gaining weight.

The above photo was taken during "bath" time for Mira. We are looking forward to getting her bath chair, but in the meantime are still sponge bathing her on her cushion, and putting a very absorbant, adult size diaper under her head for hair washing. Today I had quite a few helpers:

Krassimir was proudly bringing over the pillows that we use for positioning Mira (and which were out of the way on purpose for bathing). He piled both of them onto her back, and smiled like crazy when I thanked him for helping.

Gloria watched me using a q-tip moistened with the foaming cleanser we brought home from Gillette to clean between Mira's toes. She's a quick learner.

Evania was heavily involved as well, helping me squirt out the foaming no-rinse body wash, and combing Mira's hair. Bogomila had wandered out of her room, and was on the floor near us as well, supplying musical entertainment with my phone.

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Being a sibling to a child with special needs is a good thing for many reasons, not the least of which is ample opportunities to practice patience. Mira had an appointment this past Thursday with a new provider - a "complex care" doctor, whose job it is to keep an eye on all of Mira's systems, and coordinate care, so, for example, if she needs ear tubes, she can have it done at the same time as her dental surgery so she only has to go under general anesthesia once instead of twice.

We knew, even with her 8am appointment, that the schedule was going to be tight in getting Bogomila, Krassimir, and Reuben to their 10am therapy appointment. Problem is only Big Blue works for Mira's chair, and the Jetta can take only one at a time of the other two chairs. So, our plan was that just in case I didn't make it back in time with Big Blue, Matt would take Krassi's car seat out of the van to put into the Jetta so the three kids could physically get to the therapy center (with Bogomila's wheelchair in the back), and I could meet them at the center with Krassi's wheelchair if by some chance I didn't get home in time for them all to just take Big Blue.

When the nurse told us (at 8:30!) that Dr. G. usually blocks out two hours for these initial appointments, I decided I'd better give Matt a call so we could devise a Plan C. That ended up meaning that Krassimir made due without his wheelchair for both of his therapy sessions (thankfully they have a variety of seating options at the center), and Matt and his three were at therapy and back before the little girls and I got home.

Putting patience into practice: these three (in the background in the photo above) were absolutely rock stars during this visit! We arrived at 8am, and did not leave the clinic until 11:30am. What you're seeing is the waiting room at the lab - the last stop before we left, so about three hours into the long morning. Gloria hit one point around 10:00 where she was not happy playing on her own OR in Mommy's arms, but to have fifteen minutes of crying from the youngest of the four I had along was very workable.

The funny thing is that even on the days when the little ones *don't* have to come along with me (they can often stay home and play while Daddy works), they prefer to come along. The ability to wait patiently and devise ways to occupy themselves is a skill that should serve them well for the rest of their lives. Might as well learn it early!