You've got your hands full

People are always telling me I have my hands full. Funny thing is I'm often out with only *some* of the kids when they tell me that!

Here, in this post, are a few examples of what it looks like around here to "have my hands full."

Home Schooling with your hands full:

Kindergarten math lesson happening on the right. On the left, a mid-morning g-tube feeding. In the center, Evania and Gloria playing with the dish of coins we use for learning kindergarten money concepts.

I've learned that if they have something to *do* with the coins (like putting them into little cups) they're much less likely to put them in other less desirable places...like their mouths. Most of the time it works.

Sometimes this is what it looks like to have my hands full:

Why is it that "you sure have your hands full" always has such a negative overtone? Everyone, if they would stop to think about it, has their hands full of something. This just happens to be what I've been given to fill my hands with, and there are few things I would rather have filling my hands than this!

Or this! Sorry about the funky hair - this was right after a hair wash, so we're taking advantage of rolling over to spend some time holding her in my arms. She'll get her hair brushed after she's laying down again. But look at that amazing girl! Look how alive she looks! She is starting to get so good at this sitting upright thing that last night we gave her her bedtime neb sitting up in mommy's lap. It went well enough that we did it again tonight before bed, and I was able to even hold her a little beyond that before we could tell it was time to be done.

Here's Mira with her hands full:

Mira's little 5-year-old cousin from England wanted to send her a stuffed animal when she was in the hospital. It finally arrived this past week, which was actually perfect timing. While Mira was in the hospital, she was not even capable of holding something like this in her arms; now a toy like this is perfect size to fill the space that she is now loose enough to maintain!

 Even the littler ones have their hands full:

Evania (yes, that's still lunch on her face, thank you!) wanted to help me bathe Mira. Here she is trying to put a fresh sock onto her older sister's tiny foot. As Rinnah watched me washing Mira's hair, she said to me, wistfully, "I wish I had my own little girl like Mira to take care of, but I know I have to wait until I am older."

Owen with his hands full. 😀

And again - how neat is it to get a ride from your big brother!! The older that firstborn son of mine gets, the more he enjoys his baby siblings.

We've also had our hands full with this guy:

Reuben, after his amazing 22 day stretch of being seizure free, has had at least one seizure on 9 of the last 12 days since then, with three of those days escalating to the point that we administered his rescue meds. Reuben's normal for the last few years has been a bad run of seizures once a week. This almost every day thing really keeps us on our toes. But in a heartbeat I tell you that I'd rather have my hands full of the challenge of being Reuben's mom than miss out on loving this little guy.

So, yes. I've got my hands full. But I don't think anyone could convince me that what I've been given to fill them with is anything but a good thing.

With a little help

This week the bedrooms that have been frozen in time since the girls and I (and Leah, Grandpa, and Adam) landed at the airport, have finally gotten a great big push forward.

Someone we know through my parents offered to make the five hour drive and stay here for a few days to get work done! She loves to paint, and loves kids, and we had plenty of things that fit those categories to fill every moment of her time here.

Sheetrock dust on the landing. This means something is happening down in the basement!!

Coming down the stairs you can see the newly installed door to Owen and Krassi's room.

Matt and Owen working on cleaning the room up - getting the dust out so we can PAINT.

It begins!!! Blue paint on the walls. This is the "light" color that Owen chose when we told him he couldn't do the whole room black.

Reuben and Krassi had President's Day off school, and Reuben spent much of his morning watching Lindsay paint while sitting in this old chair with his Bible.

Owen's nifty bed cubby is a darker color - still not the black he really wanted, but still an awfully cool color - even the name, Underground, has a neat sound to it.

One day and the room is almost completely painted! The ceilings (and the closet), have been painted with our left over ceiling color from the addition, the Underground, the blue...

The purple is a remnant of the one wall that was sheet-rocked and painted when this was still my basement sewing room. Owen wanted to keep it, so we did. It needs a fresh coat of paint to cover the places where the new was meshed into the old. Lindsay was able to finish that before she went home, too!

So then it was on to Bogomila's room! We had told her that once she was home she would have the chance to choose the color of her bedroom. She wanted DARK blue. (What's with these kids of mine and dark paint colors???) We compromised with dark blue on two walls and a lighter (but still very vivid) blue on the other two. This is the "light" color Owen decided to go with down in his room. Bogomila got to help throw some of the first color on the walls!

Trimming out the end wall.

And rolling on the color, with a helper. Always with a helper!

Late night photos don't do it full justice, but it gives you something of an idea! Matt and I had left the walls of her room empty on purpose so she could choose her own artwork. She picked out this neat aluminum panel with the New York City skyline when she and I were out a few nights ago.

Wednesday's task was to work on painting trim for the boys' room - with all of this ready to go, it won't take long to get the room ready for moving in! The boxes at the back of the room are the carpet squares Matt picked up when he was out on one of his Home Depot trips. Once we're done using the sub floor as a drop cloth, we can lay the carpet!

We are always delighted by the unexpected ways God takes care of us - the big things, the little things - so many resources that are at his disposal. What a good gift it was to get this big push forward on our current projects!

"Bath" time

We are still bathing Tsvetomira simply with a washcloth wipe-down while she's laying on her lovely gray memory foam cushion that goes wherever she goes. Someday I would love for her to be able to be IN a bathtub, but at the moment that's still a little scary.

Her hair wash is done over a very absorbent adult size diaper, which works surprisingly well. She's drying off here with her special hoodie towel made by a friend of ours from church.

 Every single one of our children has been given one of these as a baby gift. Our friend makes each one she gives special for that child - she doesn't just have a pre-made stash - so that makes them extra special. WE love them because having a unique towel for each child makes it a lot easier to reduce the number of times we have to wash towels! It's just fine to use your own towel a few times before putting it through the wash.

Hanging here you see, on the top row from left to right, Tsvetomira's, Evania's, Owen's, and Krassi's. On the bottom is one lone house towel, then Bogomila's, Rinnahs, Leah's, Reuben's, and Gloria's.

 The towels are kind of a big deal for the kids around here, and the last few times we've added someone to our family, there's a big debate over who gets to help open the present that we know has the towel in it!

Here's my pretty girl all fresh and washed up. She does very well with her bath - you can see how relaxed her face is.

I've chosen to share this photo to help show how very misshapen her spine is. Even from this view you can't get a full sense of it, because it also curves in a c-shape from side to side. It's pretty intense. What's perhaps more incredible, is that every single one of her internal organs that's been checked out has been found to be properly formed. It only confirms to us (and the doctors we've talked to agree), that the shape of her spine is purely due to circumstances - she was placed in this side-lying position, and her body grew under the pressure of gravity to match it. It's likely that she was rarely rolled over in her early years, and this explains the sag to one side of the spine.

Two of our friends gave birth to baby boys yesterday. What an exciting day. ;) Both of those little boys are going to be held lots and lots, and likely no one holding them is going to be thinking at all about the innumerable benefits those newborn boys will receive from that holding! They will receive all of the psychological benefits of human touch! Their bodies will grow in a well-balanced way because gravity will have a chance to work evenly from all sides. Their bodies will grow strong because they will be given, little by little, the chance to bear weight, and use their muscles, and stretch their limbs. When I look at Tsvetomira's body, I see the mark of gravity and time, almost as a physical presence, as though they pressed their hands so firmly for so long on her body and it had no way to resist the pressure.

So WE are now working every day at giving her what she did not have for so many years.

Almost every diaper change is a chance to pick her up for a few moments. I always feel like I'm holding a porcelain doll when I have her in my arms. She has no way to tell us, but every time I hold her, I think of the head-rush you get when you sit up too fast. Is it like that for her to be vertical? Does her heart, her circulatory system, have any concept of what to do with verticality? I am very careful to be mindful of the relationship between her mouth and her throat, because it is only moments before too much saliva pools in the back of her throat if she is not held properly. We are not able to snuggle like this for very long at a time before it's obvious that she's uncomfortable, but at the moment, this is some of the most important "work" that she is doing every day, and my hope is that she, too, will receive many benefits - first of all, the feeling of closeness to another human being (and not just any other human being, but her mommy!) - but also the benefits of different movements, different pressures, which hopefully will tiny bit by tiny bit prepare her to be able to tolerate, and hopefully learn to enjoy positions other than side-lying, and hopefully open up more and more of the world to her.

[Mira is not wearing pants in either photo above because it is simpler to avoid uncomfortable folds and puckers at her hips where we are trying to avoid bed sores. She gets to wear a pretty shirt, cute socks, and a cozy blanket whenever she's at home. We save pants for going out.]

Learning by example.

While there are many things that are worth sharing, and I hope to get to them soon, tonight I'm just going to go with cuteness.

Gloria is lucky enough to have many older sisters who like to do her hair. She is wearing her first pony tail, along with at least 8 barrettes, thanks to Rinnah.

 She's not the only model around here, though. At thirteen months old, she's quick to pick up on and duplicate another of her older sisters' pastimes.

 Doesn't Mira look lovely?

The little girl who "can't tolerate touch because it causes her to have seizures" handles all sorts of touch without blinking an eye. We've still only seen two seizures out of her since she came home, and they were both very, very short.

Life is pretty good for that newest* daughter of ours!

*Tsvetomira is technically our "newest" since we picked her up about an hour and a half after we picked up Bogomila, and Bogomila's name is first on the court documents.

The Princess Bride

As a necessary indoctrination into our family, we watched The Princess Bride with Bogomila last night. ;) In order to get Bulgarian subtitles (which, by the way, took us almost an hour to get figured out, but we eventually were able to download and view (the important part!) a mediocre version of subtitles), we had to watch on our little computer screen instead of going up to Grandma's sitting room and using her television. The up side to doing it down here is that we all just pile into and onto the chair-and-a-half that we keep in the dining room. It's a cozy way to watch a movie together, and we're pretty sure Bogomila was able to follow enough of the movie, because she was laughing appropriately at the funny parts.

I had her laughing hard enough during her bath after we were done with my impersonation of Inigo Montoya (Hello, my name is Inigo Montoya. You killed my father. Prepare to die.) that she had a hard time catching her breath.

There is nothing as good as laughing together to build connections as a family!!

Small steps, often baby steps - I know she's missing her old life, her old friends, but she is quite the girl, bravely taking on this new adventure for better or for worse!

Some little bits

In no particular order, here's a bit about what's going on around here.

• Tsvetomira had a follow-up appointment at Gillette to check on her surgery site and go over the plan for moving forward with her care. 

The best part about the appointment was getting her weight. Two years ago she weighed 11.2 kg. We were told when we visited her in September that she was pretty much done growing. When we picked her up, her current weight was 11.5 kg. When she was discharged from Gillette, she weighed 12.2 kg. I wasn't going to make much of that until she'd been home for a while - she was still slightly swollen, and I didn't want to make too much of something that might have been temporary.

Well, on Monday's appointment, she weighed 12.3 kg. The little girl who was "done growing" after only putting on .3 kg over nearly a two year period, has put on .8 kg in a three week period.

• And that's on top of plenty of pooping! 

This deserves a bullet point of its own because when we picked her up, she had a large, solid mass high up in her intestines (the initial diagnosis of which we have Adam to thank). Nearly every day of her hospital stay we were working on moving that mass through and out, so her weight gain above is in spite of rigorous efforts (and numerous successes) in moving out significant amounts of matter.

She is taking Miralax daily, and something else at bedtime, but since her first three days home, we have not had to use an additional suppository, and she is staying regular. We know this is going to be something we have to be constantly vigilant about, but even with her severe constipation, her doctors at Gillette all doubted her diagnosis of Hirschsprung's disease. They all believe with proper management, her bowels will work just fine.

And an update, since this post is taking me many days to write - she did it again all on her own today! This may seem minor, but to us it's a big deal!

• Which leads me to a side point. The medical information you get with a child's profile when you're adopting all has to be taken lightly. 

Some things are mildly different, some things may be missing, and some things in there are just flat out wrong. Take this guy, for example. His medical information included the statement that he "rarely smiles."

Ha. They were wrong.

He likes to pick his nose, too. They forgot to tell us that.

In many ways it's the same whether you add to your family through birth or adoption: you never really know what you're going to get!

• Gloria, at 13 months old, is speaking a language we call "Bulgar-engliski" or "Englarian."

She is the first child I've ever seen for whom "yes" is one of her first words. However, it quickly became "das" which is a great combination of the Bulgarian "da" (for yes) and English "yes." We all smile and laugh when she sits there nodding her head saying, "Das, das, das." Bogomila still adores Gloria, so is particularly tickled by this. We're hoping Gloria in particular has a good chance of picking up some Bulgarian as she interacts with Bogomila in these days of intense language acquisition.

• Bogomila had her first visit with the doctor who will oversee the care of her cerebral palsy. 

Fun bit of trivia - he was adopted when he was nine years old! He has cerebral palsy, and he sympathized with Bogomila about the difficulty of the language barrier, although when he came home to his family 40 years ago, google translate, limited as it is, wasn't an option. He had a dictionary. And that was it. We did not have a real-life translator at the appointment, but through an iPad were able to access a live audio-only translator - definitely way better than any of our other options! It was useful not only for the appointment, but we also, while waiting in between doctor and nurse and x-ray, made use of a real Bulgarian-English speaker to go over a few other things that are complicated to do any other way, things like organizational techniques for the new music she wants to add to the mp3 player Grandpa gave her, or the eye exam with pupil dilation that we have coming up!

• Mira spent some time in the living room today and got to enjoy Grandma playing the piano...with help from some little sisters.

• Bogomila asked me while we were still in Sofia if she could get a hair cut. She wanted SHORT hair!

So we did. She had to wait until we were a bit settled and all living at home together, but on Sunday we went out and got the job done! (No pictures. ;) Bogomila didn't even like me taking the photos, so I'm definitely not going to share them here!) But here's a shot of the evidence, which she DID give me permission to share.

Her hair is now VERY short, but she loves it, and it's awfully cute on her. I kept a lock, and the stylist put it into a "baby's first haircut" envelope for me.

• Reuben just ended the longest seizure free stretch he's had since the beginning of 2013. 

He went twenty-two days without having any seizure activity!!! We had one 19 day stretch about a year ago, but nothing even close to this since the 3 month reprieve he had from late 2012 into early 2013. Our usual routine with him is about a week clear, and then he gets pounded, almost always needs his rescue meds, has a day to recouperate, and then is good for another week.

The fact that this break, both for Reuben and for us, happened to coincide with one of the biggest life-transitions our family has had does not miss our attention. And in case we were tempted to brush it off as *just* a coincidence, we keep records of all of Reuben's seizures. Guess what time he had his last one: 3:15 am on Monday, January 23rd. That was in Minnesota. Guess what time we were busy breaking Tsvetomira free from her orphanage? Good guess. 3:15 am plus an 8 hour time difference gets us to 11:15 am in Bulgaria, which is when we were busy signing that girl out of the institution.

Valentine's Day [by Matt]

A month or so ago, when Andrea was reconciling our credit card statement in Quicken on our computer, she commented that out of all of the payments on the account, to which we both have a card, only 4 were on my card and 2 of those were automatic payments and the other two were for gas at the gas station. We joked that she needed to let me out of the house more often!

I got my chance this past Saturday when I had to run out to the store to pick up a prescription. I decided that was my chance to get something for Andrea for Valentine's Day. In general, we don't go out of our way to do "extra" things for days like this as we both believe that it is far better to live a life day by day that demonstrates our love for each other than to once a year do something "extra". However, since I was out so close to Valentine's day, I did get her some chocolate that she likes and gave it to her this morning at breakfast.

Then this evening at supper Leah passed out all of the valentines that she had hand made for each of the members of our family. I was touched by how creative she was and how she made each one so specifically for the person she gave it to. Below are just a few images of them.

Here is the one for Mira just telling her how much Leah loves her.

This is the one for Bogomila, written in Bulgarian.

On Krassi's wrist is a Valentine's bracelet for our guy who loves to wear bracelets

As you can tell, he thought it was pretty neat.

While these are "extra" things that Leah made specifically because it was Valentine's day, it reminded me of what life around our house is like. There are plenty of things about the general size of our household and the decisions that we made as a family to make room for Mom and for Krassi and Tsvetomira and Bogomila to be a part of our family that can bring about daily challenges. However, it also gives us many opportunities to love, day in and day out. Much like Leah's valentine's day cards, what it looks like to love each person in our household looks very different and is specific to each person.

Would you consider...

Anyone who's been reading anything here over the last month already knows who Adam is.

Adam (and his wife Amy), share a rock-solid faith in God, and a huge heart for orphans, as evidenced by their own family (of twelve! many of whom used to be father- and mother-less) and by their willingness to give freely of themselves for others (like us). I am as grateful to Amy for giving up her husband to come with us to Bulgaria as I am to Adam for doing it!

Without taking too much time, since I'm tackling this in the middle of the day (while home from church with the crew who's too sick to go out!), I'm going to ask you to check out Adam's dad-blog (HERE), and consider pitching in on their YouCaring site (HERE). The little girl who is going to become their daughter couldn't have asked for more passionate, loving parents, and what an honor is is to, through sending you their way, help be part of how God is going to tear down any financial barriers there might be to getting her home as their daughter as soon as possible!

Adam and Amy's family

Sisters

As expected, my days do not [yet, hopefully] allow me the downtime to process my thoughts in the way that I would like to be able to in this venue (or any venue at the moment, for that matter!) but I DO want to share a few sweet photos of Mira. Gloria is absolutely taken with Mira, and spends a lot of time right near her every day.

~~~

Bogomila does not particularly like me even taking photos of her, so I am respecting that by not sharing the ones that I AM taking, but I do want to brag on her just a little bit.

The setting - mid afternoon before supper time

Mom: "I think I'm going to make pizza again tonight." (For the third time this week since it's something I can make easily and quickly without much forethought, and that's about what I've got in me right now!)

Bogomila: "Nooooo!!" (though she's liked it just fine the other nights I made it)

Mom, teasing, and speaking through google translate: "Well, are you going to make supper?"

Bogomila, smiling, and replying via google translate: "No. That's women's work and I don't want to do women's work." (She chose, of the three options we gave her, Brianna, as her middle name, because it means "strong," and she reminds us of that! Apparently working in the kitchen does not go along with that in her mind.)

Mom (and google translate): "Well, then I guess we're having pizza.☺ Did you know that Daddy cooks? And Owen cooks?"

Bogomila: "Brownies?" (She's starting to get some English, and that's one of them! We've had a lot of goodies coming with the meals many generous people have been providing to us!)

Mom (in google translate): "I don't have time to make brownies. Do you want to make them? I will help you."

Bogomila: "Yes!"

So we did. I obviously had to read the recipe, and I helped her with the measuring and gathering because I know where things are, but she dumped everything into the bowl, and did all of the stirring, and scraped the bowl into the pan (doing a very thorough job on all of them!), and we had some very delicious brownies after our supper of pizza and tater tots. (Also quick and easy!)

We made it home

As expected, there was not time to post last night about our big home coming. ;) But I did want to throw a few photos out there to show you that we really are home!!

We played it safe yesterday, and Mira lived on the dining room table for the rest of the day - even at supper time! Grandma kept commenting about our new centerpiece. ;) We're not concerned about her rolling just yet, but always had someone on guard just in case. Here I'm in the middle of feeding her, and Owen's in the middle of math. She had one short seizure, but otherwise a great day.

First night sleeping in her very own bed! We've got her feeding pump in its backpack hanging on a hook in the doorway. Hanging above her head is a sweet little drawing Leah made for her.

She slept quite well, waking up crying twice, but very easily settled with mommy stroking her hair and talking to her.

Guess what we got to do on our first full day home? Go back to Gillette!! 

Their dental clinic is notoriously difficult to get into because they're scheduled out so far. Over the twelve days we were inpatient I kept asking if someone could just come and look at her teeth, but it didn't work out. We were grateful they were able to get us an appointment so soon (when we tried getting one for Krassimir when he first came home, it was over six months out!), so we took it. Well, this is how it went. I walked up to the desk, was told to wait, waited for about two minutes, and the hygenist came out to call us in. She asked me if Mira was going to sit in the dental chair or just lie in her chair. I said she'd stay in her own chair. We wheeled back to an open bay, and she asked if I had any concerns about Mira's teeth. Why, YES!!! Her gums are terribly inflamed, red, and tender to the gentlest touch, and most of her teeth are ground to practically nothing, pocked, and look like they'd need to be pulled. She called the dentist, who came, took one look in her mouth, and sent in the person who does pre-operative registration. After going through that paperwork, someone from the office walked in and said she was "scheduled" for June 15th, the first available, but that Mira was first in line on the cancellation list, so we should expect a call with about 24 hour's notice and they'd get her in. That gives you some idea of how bad they think her teeth are. I have a feeling that she didn’t just happen to be the only child waiting on a cancel list, but they realized immediately that she needs some attention given to her mouth, not only for her comfort, but for her health! So she’s first in line for a cancellation.

Still, it would have been nice if someone from dentistry had been able to take 6.5 minutes to walk from the dental clinic to the inpatient neurology wing, three minutes to look at her mouth, and then 6.5 minutes to walk back. It would have saved us a lot of monkeying around to get Bogomila and the boys to therapy and me and Mira to Gillette at roughly overlapping times with one vehicle (because our little car is too small for Mira's chair!) Oh well. We accomplished what we needed to with that one! 

I haven't held her like this since the last day of our visits last September. It was SO much easier today, probably partly because I'm more accustomed to how her body works, but also because she's just enough more relaxed that she "fits" a little better than she did back then.

Today she was not up on the table, but in a protected, but accessible corner between the dining room and the computer room. She had three different sisters combing her hair over the course of the afternoon, and Gloria visiting, too. This is Gloria's "smile for the camera and squint for the flash" look.