Little/big accomplishments

Soon after Krassimir came home, we had a swallow study done and found out that he has a tendency to aspirate (swallow down the wrong tube) thin liquids. Even scarier, he does it silently, without coughing, so it's hard or impossible for us to know when it happens. We immediately stopped working with him with a cup, and just added extra liquids to his pureed food to play it safe.

Since almost a year ago he's been working with a very skilled therapist on expanding his eating and drinking abilities, and we just recently decided he was ready enough to try it again at home with his special bear cup that really lets us control his head position and has the added benefit of strengthening his oral muscles as he sucks up the straw. Because the bear is squeezable, we can assist him a bit so he doesn't have to suck so far before he gets it in his mouth.

Having his head tipped down greatly reduces his chances of aspiration. We also reduce the risk by giving him things that are thicker than water - usually we've been doing Pediasure in the cup, often with some powdered milk in it to thicken it up even more.

Do you see what he's doing? He's signing "more"! This is a little more exciting than it seems at first glance because he tends to sign more for everything - more or all done (useful, huh?) or pretty much anything we ask him to tell us. It also looks a lot like plain old celebratory hand-clapping, which is also a skill he has now. But here it definitely meant "more."

Look at the concentration and determination on his face - and check out how nicely he closes his lips on the straw, and how you can see his cheeks are working at sucking! We are so proud of him.

~~~

Owen took this picture for us last night. I was just getting ready to put Krassi in his jammies for bed, and stood him up as I carried him into the room. He is getting so good at carrying his own body weight (though I still do have to remind him to put both feet on the floor - the dislocated hips make gravity seem to flow awkwardly through his body, like he sometimes just can't get his feet to make real solid contact with the floor, if that makes any sense.) What I loved best about this photo was that I was telling him to stand up big and tall for the picture, and he pulled his head and shoulders up and gave himself another inch or two for the photo. He's so pleased with what he can do! I'm doing all of the balancing work for him (if I let go, he'd be on the floor), but he's carrying all of the weight.

Krassi and mom.

For comparison, this was Krassi standing with me about a year ago. We both look different! ;)

~~~

Lastly is a little anecdote from school this morning. (That's the bonus of it taking me a few days to write a short post like this! You get just a little bit more than if I had finished it up last night!) Reuben didn't make it to school today because of seizures, but Krassi still went for his 2 hour stint in the morning. When Matt dropped him off in his classroom, one of the other students (our two boys are two of six students in the class) who is notorious for being VERY LOUD, looked up and quietly said, "Hi, Krassi!" The paras marveled at how this student regularly shows the ability to modulate his voice appropriately for Krassi in a way that he does not/can not in other situations. It delights me to see how this severely disabled son of mine is somehow simply through being there able to help this classmate of his begin to develop a skill that will serve him well as he grows and learns to best navigate this world. It's one thing to know the intrinsic value of each human being, and something different to see in action how every single one of us has a real role to play, and has the ability to impact others in a positive way.

I am so happy I get to be this boy's mommy!

He's still got us covered

There are all sorts of pieces of equipment that are available for children (and adults) with physical handicaps like Krassi - eating chairs, bathing chairs, seating chairs, wheel chair, adaptive strollers, gait trainers, standers - and I'm sure there's more, too. Part of the problem with this overwhelming array, particularly when you're not starting with an infant and working up to it slowly, is that it's hard to know what you really need, what you can get by just fine without, what takes up more space in your home than it's worth, and what falls in between all of those categories.

For Krassi, we've gone with a less-is-more approach, partly because we wanted to give him as much unrestricted time to explore his surrounding after so many years of being confined, but also because too much equipment all at once is more trouble than it's worth! It was wonderful to start out with a basic large umbrella-type stroller from Dondi that we could use while we traveled to pick Krassi up - it folded up well, and did the basic work we needed. For a long time after we got home, it was also what we used during mealtimes with Krassi

Eating in Sofia, Bulgaria on our pick-up trip, October 2013

Very soon after coming home, we were at the house of new friends who have a daughter with cerebral palsy, and loved the chair she sat in for mealtime, so very quickly ordered ourselves a Special Tomato seat in the right size, and it's been a great fit for Krassi, and still is.

At home, December (?) 2013

Also within weeks of Krassi's arrival, one of the other regular families at our therapy center offered us the long-term loan of their daughter's adaptive stroller as she was outgrowing it, and it had a number of semi-custom features that were a good match for Krassi, such as the pommel to help with his scissoring, and the ankle-holders on the footrest. This thing is a beast to heft in and out of the trunk of the van, and means that any time I go grocery shopping, I have to load in all the children, and then fill the aisles of the van with groceries because my trunk space is full, but I can't imagine what we would have done over the last year without it! We use it for walks and for errands, he sits in it at school and church, and it also makes a great place for Reuben or Evania to sit and stay out of trouble while I'm dressing Krassi in the YMCA locker room after his pool therapy sessions!

At school, January 2015

As I've posted about a few times, we are currently (still) in the middle of the (very slow) process of getting Krassimir his own custom wheelchair that he will be able to learn to maneuver by himself. We will also get it rigged so it can be secured into our new van (when we eventually decide to get one!) for getting around, and it will allow him to take the bus to school instead of needing one of us to take him and pick him up every time. We are very much looking forward to its arrival!

Well, over last weekend, Matt was talking with me about how it would be really nice to have something other than his wheelchair that he could use around the house. Something with wheels, but also obviously the capacity to lock the wheels, and not something that Krassi could move by himself. It would be really great if it had some height adjustability so he could be low to the floor with the other kids, or up at table height. He was thinking a tray would be nice, too, so Krassi could have a surface on which to play with toys.

As he's done so many times before, God already had us covered. Just two days earlier, when I was at our home away from home (aka, the therapy center), one of the new (to me) moms asked what I had at home for my son to sit in, and I described a few of the things that we use to make do, but that we didn't really have anything specifically for that. She proceeded to bring up a photo on her phone and ask if we would have any use for one that her daughter had outgrown.

Um, yes!!

But I didn't think to tell Matt about it until after he'd described to me what he was envisioning.

Which was, pretty much exactly this chair:

Krassi can sit up high...

...and at the touch of a foot pedal (and a bit of a push by hand), he can sit down low enough to play with his three-year-old sister.

And today, we used it to Paint!! Krassi and I have attempted painting together a few times, but with the chair (and a sleeve-less shirt covered by an apron), he was able to be more independent about it than he's ever been! There was still plenty of hand-over-hand guidance needed, but he delighted me by reaching for the paint, wiping his hand through it, and then going for the paper.

Krassimir was painting today to help out his buddy, "Brandon," who I've mentioned before. Past Pleven families (and others) have over the last few years put together internet auctions of donated items to help new Pleven families raise funding for their adoption, and "Brandon's" family is going to be the beneficiary of the next Hidden Treasures auction. Krassimir's contribution is a set of eight hand-painted notecards. ;)

Just for fun

Yay! Look who's loose enough after botox injections to ride on mommy's shoulders!! He thought this was as much fun as the picture communicates!

Spring has (prematurely) sprung! Owen, Leah, and Rinnah had the first picnic of the year today.

It's really too warm for the sap to flow well (there's a story in there I may or may not ever get to), as you can see by my oldest daughter's attire. I don't know that *I* was quite ready to get a sundress out, but I was okay with her wearing one. It was so nice we all went along to help Daddy collect the little bits that ARE flowing. (If you know anything about maple syruping, too warm is not a good thing for sap flow - you want to fluctuate between the 20s and the 40s - right on either side of the freezing point.)

But this was Krassi's first time to really be out since last fall, and he was absolutely delighted.

I'm asking him here, "Krassi, are you so excited to be outside?" And he was responding by clapping his hands. By the way, have I mentioned how much I love it that he can clap his hands? I'm just realizing now that this is a relatively new skill - really since last fall when he's been more able to open up his left hand on his own.

Back inside we spent a bit of time in the afternoon down in the basement on the platform swing. Krassimir and a pink and purple butterfly went on it together. His posture still leaves a LOT to be desired, but activities like this give him good opportunities to work his core and build those terribly underdeveloped muscles.

Love that happy face!

I included this one just so you can see what he's able to do with his left hand. It has been such a beautiful thing to watch this hand open up like a flower unfolding and to see him trying and achieving so many more things with it. For so many years it was gripped in a tight fist in an attempt to give him some rigidity to compensate for his low muscle tone, and as he's growing stronger in other ways, and through work with his occupational therapists (and mom under their direction), we're seeing tremendous improvement.

And one more - this one a day after the others - we realized that bigger grips would be better for Krassi, so a trip to Menards and $1.94 later we have nice soft foam grips in a 1.5" diameter instead of 3/8" rope. How fun to have all three of these little ones on there at once! You can't see it, but Reuben's got his Bible on his lap. ;) He rarely goes anywhere without it. He kept counting for me, "Do, doo, dee!!" "Yes, Reuben, there are one, two, three! children on that swing!"

Random bits

Am I allowed to post more than once a month? I sure *haven't* been.

Don't worry. This will be short.

1) Krassimir now weighs a whopping 38 lb, 15 oz!!! That puts him an ounce away from a full ten pounds up since he came home just over 16 months ago!

2) Today Krassi got his first Botox injections in his adductor muscles. Briefly, botulism toxin (bo-tox) is a neurotoxin that temporarily reduces the amount of "firing" that neurons can do in the muscles where it is injected. The effects will wear off completely in about three months, but in the meantime, he will experience some relief from the high tone he has in those inner thighs - the muscles that pulled his hips out of joint because no one ever helped him form good hip sockets in the first place, and for the first eight years of his life no one ever did any stretching or anything to help him manage his uneven muscle tone. The hope is two-fold - first, that with less to fight against, the other muscles will have a chance to work better and grow stronger, and second, that he will be more comfortable. If it works, we'll do it again in three months.

3) Tonight Krassi and I skipped our normal bedtime cuddle routine (I'll have to write more about that another time) because I was reading to Owen and Leah, but I still had him on my lap while we were doing that. This is what happened:

My sleepy oldest son fell asleep right there in my lap!!

Sundays

 Not many things can compete with a Sunday afternoon nap. After two later nights, the little boys were tired enough that while Vania took her nap, Reuben slept with mom and Krassi fell asleep snuggled up with Dad! How neat is that? It is no small thing for this boy to accept snuggling. We have made some significant progress in this area over the last two months (that I started to write a post about, but it's still stuck in half-finished draft stage), but if anything that only makes something like this even more precious. Our son who is still afraid to let someone be *too* close (emotionally) is giving us little glimpses into the scared, lonely little boy hiding under the I-can-survive-without-love outside that he had to learn in order to survive the early years of his life.

We don't have pictures of it, but we had some of the kids' music on this evening before bed, and a crew of us were dancing with it - Rinnah's quite the dancer, and Reuben was jumping, and even Leah popped in a few times with her dish drying cloth. I prefer dancing with a little one in my arms, so first 'Vania got a turn, and then Krassi worked his way into the room and he got a turn. I LOVE dancing with this boy! He laughs and laughs and laughs!! We twirl and spin and slide and bounce, and he's giggling the whole time with that huge, wide, lovely smile of his.

And as I was thinking about commenting to Matt that Krassi never got to spend Sunday evenings dancing with his mommy when he was little, the reality that far from dancing, he often didn't get to even see anybody - anybody! - on Sundays because the staff didn't really want to come in on Sundays, and the director didn't really want to pay them to do it anyway, so often Sundays were the day he didn't get his once-daily diaper change, and didn't even get his pour-it-down-your-throat gruel in a bottle.

There are many days when the horrifying conditions that were his only reality for eight long years seem so unreal that I can't find a place for them in my consciousness, and then some days like today when it floods back and catch in my throat and my heart.

Open your mouth for the mute,
For the rights of all the unfortunate. 
Open your mouth, judge righteously,
And defend the rights of the afflicted and needy.
(Proverbs 31: 8-9)

Twelve days ago, twelve of Krassimir's former orphanage-mates' nightmares became real-life as they were moved from the Pleven orphanage to a small group home run and staffed by people who lost their jobs when the new director took over the Pleven baby house. Plans for this move were happening unbeknownst to the current director until less than a week before the move was to take place. Originally, they were to take 20 of the older children from the orphanage into their new group home, but the new orphanage director (who continues to make good progress) managed to make a case for eight of them being too medically fragile to be cared for at the new group home. But that still leaves twelve defenseless children who grew up under the abuse and neglect of these people, who have had just over two years to begin to heal and grow, back in the hands of the very people who damaged them so severely.

I get sick to my stomach just thinking about it. Krassimir has very low cognitive abilities, but he has the ability to recognize people. We saw this about him in the first week we met him at his orphanage, showing a range of appropriate emotions: happiness (to his baba), ambivalence, trepidation (for us), and even now, he will recognize and respond with pleasure to seeing the face of a person he's only seen once before, but has treated him with kind ness! I can't imagine what it must be like for those twelve children to be not only seeing the faces of their abusers, but seeing only their faces now, and none of the faces they've been learning to trust.

There is very little from a human side that we can do to "open our mouths" for these afflicted, needy, voiceless children. But you can open your mouth to God on behalf of these children!

And there is something tangible you can do for at least one of those twelve children. I have not been very vocal in this way on my blog, but this situation really grabs me, so I'm going to throw it out there just in case God is directing one of you reading this to do something. Two of the children who've been transferred are currently available for international adoption, and one of them, nicknamed "Brandon", who reminds us very much of Krassi - same diagnosis, same age - just a week ago had a family who was already into the process of adopting another little boy with severe medical issues from a different orphanage in Bulgaria decide to add him to their adoption process. Unbeknownst to him, Brandon is not only going to get out of the horrific situation he's back in, but he's going to leave not to go back to the Pleven orphanage, but to a family!!! They are currently trying to raise the extra money that it will cost to adopt a second child rather quickly so they don't compromise their other soon-to-be-son's health by adding extra time to the adoption. If you're interested in helping, you can go here to donate funds to Brandon's family for his adoption expenses.

Brandon

And since I'm on this topic of speaking out for orphans, Matt and I have a friend from graduate school who has adopted a child from the Democratic Republic of Congo, but the government there has suspended the issuing of exit visas for these children. Hundreds of children in the Congo are legally adopted but have not been given the visas they need to travel to the US to live with their families. So they wait. And their families wait. This situation has been going on for over a year and a half, and some of these former orphans have died while waiting for their families to come get them, and the rest of them are just stuck there...waiting. A formal petition to our government has been initiated in an attempt to let President Obama know that these children matter, and asking him to intervene. If you are so inclined, you can go here to add your name to the petition.

We can't fix all the problems in this world, but we are told to speak out on behalf of those who have no voice, so that's all I'm asking - if God is telling you to act on their behalf, here are a few ways you can do that.