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.

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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.

 ~~~~~~~~~~~~~~~~~~

  "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!

~~~

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.

~~~

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.

~~~

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.

~~~

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.

~~~

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.

~~~

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!