Thursday, April 27, 2017

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 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.

Thursday, April 20, 2017


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 

Wednesday, April 19, 2017

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

Sunday, April 16, 2017

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

Friday, April 14, 2017

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.