Trying something new

Some days I think I must have passed over the boundary line between sanity and flat-out crazy.

Today we painted for art. Reuben was home sick from school, and I've been wanting to give Krassi a chance to try something out of his ordinary, so we decided to go for it.

It really does feel that bright and airy in the front corner of the new addition.

No brushes, only finger painting for Krassi at this stage in the game. His job was to play around with the paint, and my job was to keep the paint on the paper (hopefully) or at least on the table.

We mostly succeeded. Thankfully noses wash up pretty well.

Oldest/youngest

It is delightful beyond words to see the relationship developing between Krassi and 'Vania. That said, here are some recent pictures instead of words to let you see for yourself.

(caught an awkward moment on Krassi here - the flash does that to him sometimes!)

They are almost always playing near each other on the floor, and with both of them being extremely competent "commando crawlers" they are both playing in each others' vicinity by choice. Usually what they like to play is, "I'll take away your toy while you take away mine and then we'll take each other's toy away from the other and repeat."

Tonight I got the clearest indication yet, though, of how much Krassi loves his baby sister. I know I mentioned very soon after Krassi coming home how he would show distress when one of the other children was crying, though soon learned not to be overly concerned by Reuben's screeching. Well, he's gotten much more used to the ebb and flow of a household with lively children over the year that he's been home, but tonight while he and 'Vania were playing close together, she lost her balance and bumped herself near her eye and started crying. I was right there to pick her up and comfort her, but not before Krassi himself was crying, tears and all, and he didn't stop until she did.

I am daily in awe of the delightful wisdom of God in giving us our baby girl at just the right time. It was only Matt and I who thought that waiting until things had settled down a little bit after the adoption before having a baby would be the best way to go. Thankfully God had other plans and implemented them for us. I can't imagine these two without the other, and love anticipating a future with them growing up together.

Mini update

Krassi was weighed at Gillette yesterday. That's our official weight location, and slightly more accurate than our approximate bathroom scale.

He is not quite 37 pounds.

But he IS just one ounce shy of 36 pounds, which is good enough that the pediatrician we've been seeing is very satisfied that we can confidently continue his eating by mouth without needing to supplement with tube feeding.

Way to go, Krassi.

Did I tell you he ate peas this week? Not happily (but then again, what 10 year old boy does? His DADDY doesn't eat peas happily, though to his credit, you wouldn't know it from the outside!) but he ate them!! They were mixed in with a ground up hamburger/milk/peas concoction, so he didn't have to handle them all alone, but I'd guess there were two tablespoons of peas that he worked down, chewing them first. Amazing.

Silly boy likes to climb UP on things, even if it's just a four inch high mini-keyboard case. There's a position of power for you!

Fall Festival

Owen (9 years old) has his first job this summer cutting the grass for a neighbor, and now that he has income, he does his banking at a small bank half a mile from our house so he can be completely independent. He bikes down there regularly to make deposits and pick up a cookie or a mint in the lobby. :)

This past Saturday they had a fall festival in their parking lot with free pumpkins, donuts, and hot cider. Because it was a beautiful day, the kids and I all walked went down with Owen to check it out. (Only four of us actually walked, at all - Owen biked, Krassi was in the wagon, 'Vania in the Mei Tai carrier, Rinnah and Reuben alternately in the wagon with Krassi, and Rinnah even sometimes piggy-backed on Leah.) We were grateful for Krassi's wagon on the trip home with six pumpkins in tow!

It was fun to see employees who know Owen by name, fun to choose a donut (sprinkles and chocolate for Owen and Leah, "sparkles" (cinnamon sugar) for Rinnah, none for Reuben so as to avoid unnecessary dietary-triggered seizures, and none for 'Vania and Krassi because they don't like things you have to chew) and pleasant to drink hot cider on a bright, sunny, not too cold fall day.

But what I'm really getting at (besides a sneaky excuse to share a cute picture of my six-month-old 'Vania-Cookie) is the chance to brag on Krassi and his, as my sister would say, mad skillz, of drinking cider!! Ever since we had his swallow study done a few months after he came home and learned that he aspirates (gets clear liquids down the wrong tube) and often does it silently (meaning it goes down the wrong tube, but for whatever reason, it doesn't trigger the coughing reflex), we have REALLY backed off on what we give him to drink. "Nectar" thick is the thinnest he's supposed to have, but with his speech/feeding therapist he's practicing handling thinner liquids, and she says he's been doing pretty well. So I decided to give it a little try, and found that Krassi really enjoys a good cup of warm cider! We did tiny little sips, and I was careful to keep his head positioned in the best way possible to avoid aspiration, and I'm going to say the experiment was a success.

It has been so neat to see how Krassi's eating abilities have expanded over the last few weeks. What a reminder that you never know what's possible!

So proud of my boy

Krassi's been making gains in his eating abilities in teeny tiny incremental ways. Tonight at supper he was doing so much that I was laughing with delight.

Tonight's menu was beef stew and canned peaches. (Some nights that's all I can wrangle together.) His stew was pureed like we always do, and he didn't particularly like it, but was eating it pretty well, but what really impressed me was the way he was eating little chunks of the peaches! He ate two whole slices over the course of the meal, and they weren't just slipping down his throat - he was chewing every single one! Watching my dear little boy working those chunks around with his tongue to get them in between his teeth and chew was incredible. It wasn't that long ago that the only thing his tongue did with chunks was push them out of his mouth, so to see every single piece of those two slices go in and have him work to keep it in and handle it properly was amazing to watch.

We decided to keep the momentum going by putting some of the juice from the peaches into his cut out cup since he is capable of handling "nectar thick" liquids. I've been playing it safe by going significantly thicker than "nectar" when we work with the cup, but he's been doing so well with it at home, and pushing the thinner stuff with his speech therapist that I decided to try it.

He LOVED it! And having him love anything that goes into his mouth is a victory. ;) It was a perfect opportunity, too, to work on the back and forth of signing for communication. "Krassi, that's so yummy! Krassi, do you want some *more*?? If you want more, use your hands to tell me *more*. Put your hands together like this to tell me you want *more*. Yes, Krassi!! You want MORE! Here you go! Mmmmmm. Isn't that good? Good job, Krassi!"

What a dear, precious, little boy.

~~~

Tonight he smelled a little bit like he could use a bath, so after Matt took the little-ish ones up to bed (Reuben and Rinnah), I asked Krassi if he wanted a bath. Oh, I love that big bright smile that spreads across his face! I got him part-way undressed, and then helped him "walk" to the bathtub where he sat on the stool while I ran the bath water. He doesn't generally experience a lot of clonus except when he's working really hard and is seriously fatigued, or when he's really excited about something. The combination of "walking" the five feet into the bathroom and the anticipation of the bath set his left leg going!

Judging by the smile on his face, it was all worth it.

There is such JOY in making that boy smile, and in being able to enjoy the simple pleasures of splashing in the water with him.

Krassi after one year home

Krassi really deserves a really great, long, detailed post about how he's doing after being home for a year. (90% of life: Pleven. 10%: Home. We'll keep nudging those numbers in our favor, day by day!) But although I have many photos I'm collecting, and things I want to say, I didn't get it up yesterday for the big one-year-at-home anniversary, so instead I'll throw just a few things out there that we notice about Krassimir after having him with us for a year.

1) There's a whole lot more life in those eyes than there used to be!

 A selection of photos from our first visit with Krassimir in March, 2013

And, in all fairness, there were moments like this in that first visit, too...where you got a little glimpse into who was waiting inside that shell, but these moments were fleeting.

A selection of photos from our pick up trip in October, 2013

There's a smile, but there's something just not there about his eyes.

And here are a few photos from recent weeks.

These two are really funny to watch together. They pick on (and at) each other, and seem to enjoy getting into each other's personal space!

Playing silly hand games with Reuben (bang the table, slap hands).

 2) Krassimir is a lot stronger (and also heavier) than he was a year ago!

This is how we remember Krassi sitting on the couch in October, 2013. We could prop him up there and leave him there and he pretty much wouldn't move.

This is how Krassi takes on the couch in October, 2014. Once again, he doesn't need heavy supervision anymore, as he did for many months, but it's not because he doesn't move. Rather, it's because he's starting to gain some sense of it being important to not fall off the couch (this is not a perfect skill yet, by any means, but it's developing), AND also is beginning to learn that getting down safely requires putting your feet down first.

A week or so ago he and I were able to "ride" on Reuben's little bike. If I held his feet on the pedals, and periodically put his hands back on the handles, he now has [just] enough core strength to be able to stay [mostly] on the seat and hold his body up while his feet are pedaling. This is not something I would have tried even a few months ago with him.

And, although we don't have an "official" weight on him, we know that he weighed 22 pounds at 8 years old, 29 pounds at pick up (9 year, 4 months), and according to our bathroom scale, is now weighing in around 37 pounds. But we didn't need a scale to tell us that - he just feels heavier than he did not so long ago, and you can see it - he's got muscles in his legs that you couldn't see before, and, as Matt announced while changing a diaper a few weeks ago, "He's got buns!"

3) Krassi's a whole lot more opinionated than he was a year ago.

There aren't really photos to illustrate this, but  little man here has decided that when he doesn't like something, it's worth telling us about it. Sometimes we can figure it out and fix it, sometimes we can figure it out and won't fix it. (No, Krassi, you can't play with that plastic bag. No, Krassi, you can't take that toy away from 'Vania. No, Krassi, you can't play on the bathroom floor.) Sometimes we still just can't figure it out. And although I've commented before on how he will whimper and whine about things, I've noticed a change in it - almost as though he has a sense of both entitlement (I deserve better than this) and that voicing his issues will result in a change in circumstances. He seems to recognize that it's worthwhile to make his feelings known.

On the other side, he's a lot freer with the "happy" emotions as well. Two nights ago after getting the littler kids in bed I asked him if he wanted to take a bath. I wish I'd had a camera to capture the brightness that flashed across his face, and his smile as he started pulling himself toward the bathroom! Tonight after supper while he was still in his chair waiting for Daddy to brush his teeth (a part of the day when he typically complains), I passed him the empty ketchup bottle, and he was happy as could be in that chair for close to 15 minutes banging that thing around! It's so much fun to hear him giggling from the other room (even though I usually know that means I've got to check on what he's getting into, because it's usually something he's not supposed to do!) But I love that "stinker" side of him. It's just so very human, and so different from the little boy who we first met a year and a half ago who had other more pressing issues to deal with (like surviving) than seeing if he could sneak in some time splashing in the cats' water dish. ;)

~~~

I told Matt the other day that it's hard to believe a whole year has gone by already, largely because there was so much more I wanted to do for him, and be for him. A whole year? And this is as far as we've come? So many times I feel like I hardly know this boy at all yet!

So it's good to look back and see the changes that have happened, and the ways we're getting to know each other more and more, and to remember that it's all forward from here - he's not ever going back to Pleven, and each day we have is a chance for us to build one more day together as a family until someday, hopefully, the days we have together will greatly outnumber the days we spent apart.

Every day when we wake up, I give that boy a hug and tell him how very glad we are that he is here and that he is part of our family.

old Matt/new Matt

When Matt was younger he was really into cars. One of his life's dreams was to have a fancy car - something like a Mercedes or something like that.

Well, the old Matt is no longer here - about six years ago God changed him dramatically, and although I don't have time to go into that here and now, that change has impacted pretty much every area of his life, including his ambitions regarding owning sporty vehicles.

But one thing I love about the way God works is that he can transform our self-driven dreams into something that is rather in His service.

Even a Mercedes.

As we're looking at a new vehicle that would allow us to install a wheelchair lift and lock-downs and still have room to fit the rest of the family into it, we keep coming back to this one. It's a diesel, and gets great mileage (better than our current mini van!), and should last for around 300,000 miles.

There's something beautiful to me about the "irony" of a man who used to dream of a Mercedes getting to have one of his own, but for a completely different purpose than he used to dream of.

We'll see what happens. We're still scoping out our options, but went down for a test-drive (to the one place in the state that sells these!) earlier this week, and liked everything we saw. Though *I* am going to have a bit of a learning curve getting that behemoth in and out of parking spots!

The miracle of "normal"

Evania continues to amaze us with her "normal-ness." After Reuben, and then Rinnah (who was mildly delayed in a number of ways for almost two years due to undiagnosed lactose-intolerance, and thus malnutrition, especially as a solely-milk fed baby), and then adopting Krassimir, having a baby who seemingly magically meets all of her developmental milestones without any intervention is nothing short of miraculous.

So, to then have her be ahead of the game is really quite incredible.

Check out what Miss 'Vania is up to these days!

She army crawls all over the place, and has been for a good six weeks. She's been doing the hands and knees thing for a few weeks, and starting this week has taken a knee-step forward while in that position. Then, two days ago, she started this!!!

Not bad for a little girly not quite six months old, huh?

One year ago today

No idea...

One year ago Dondi, Owen, and I arrived in Sophia, and this little boy had no idea that in the morning his life was going to change forever...

Cold feet

So, it's October in Minnesota, and that means it's starting to get a little chilly around here.

[Must....get....this sock...off...]

 But does that bother Krassi? No, not one bit. This little man knows how to get his socks off, and really, the only way I've found to keep his socks on is to put his big old braces on over the top of them.

[What you looking at??]

 He will twist and contort his body into the most unusual positions, but without fail, off they come.

[Ha! Got it! And now for number two...]

A *sweet* ride

This is Huckleberry. (The bike, that is.) Huckleberry is a pretty fantastic tandem bicycle that has the back rider in a "typical" riding position, while the front rider is semi-recumbant. It makes it a fantastic bike for someone with a physical impairment because they can not only get the therapeutic benefit of pedaling (either independently to assist with the work, or can simply have their feet strapped in so their legs are moved through the cycling motion as the bike is propelled by the rider in the back) but also get the full experience of biking - wind in their face, they're the one in the lead. There's also just a beautiful closeness between the two riders, with the front seat cradled between the arms of the back rider.

This is quite the bike. And this particular one happened to retire to a small little bike shop almost within sight of our church that we never knew existed until a few weeks ago. Here's a little snip - Huckleberry was named after Ernie's dog. This bike's put on quite a few miles!

And last Saturday we got to take it for a test ride.

Krassi's legs are tucked up and in under his blanket because moving the pedals into a position where he can reach them is not something the shop had time to do before our ride, but they're in the business of adapting bikes, so are completely capable of doing that, should it be necessary. They would also be able to help with custom seating for Krassi to support him better.

We found this little bike shop after looking for a long while for a bike that would be suitable for Reuben. Having finally made our decision, we wanted to look for a local dealer so we could see a real one before purchasing. Imagine our surprise when the German bike we're looking for not only has a retailer in Minnesota, but within three miles of where we live! Bicycle Bill apparently loves what he does, and is pretty passionate about the benefits of cycling for people with disabilities, and is very creative and devoted to finding ways to make it happen.

We have until tomorrow to decide if we want to have him place an order for us for this bike for this year (deliverable for spring 2015).

The only problem is that this particular bicycle is NOT cheap. It's cost is almost 20% of the cost of the 12 passenger van we're looking into saving up for as a conversion van for Krassi's wheelchair and a vehicle that fits our whole family.

But, for a family who loves biking, it's awfully tempting.

My Reuben

This is my Reuben. So much about this photo screams "Reuben" to me.

He's got brain ruts, and they're deep. ;) If you know Reuben at all, you probably can name off three or four of them without any prompting from me: water, Brian, bananas, putting diced food into a pot, the iPad, his Bible, Faith (because she helps him play in the water), anything blue, Kelsey (because she's almost as much fun as Brian), fire (in either bonfire or candle form). I dare you to try to redirect Reuben's path once he's started off in one of these ruts! ;)

This is a bronze statue outside of our library. We've taken a picture here almost every summer since they put it up. Here's a good one from 2010:

Owen (5 years old) and Leah (3 years)

 This year we again got our picture, not quite as nicely posed, but still captures the memory. (I'm holding 'Vania and Owen was already running off to the van - getting a little big, I guess, to sit on the bench!) In fact, we were just getting settled for a nice one with this crew when Reuben was up and off. Wait! Reuben!! Wait, buddy! Aeh, he's off again. Thankfully Owen's over there and we're parked in the handicap spot right by the end of the sidewalk so he can't get far. He's probably just heading over to the big drain next to the sidewalk anyway, and that's not in the parking lot, so it's safe.

 But he's off with a different single-minded notion in his head. He wants to go get his Bible out of the van and sit on the bench reading his Bible. He can't just "sit." And once he gets an idea like this in his head he can not be interrupted without screaming and self-harming behavior that may be over in under a minute and may last for the next hour and a half. No way of knowing. Leah gets it, so she followed him back to the bench with the camera while I worked on getting other little ones buckled into the van.

Hey, cutie.

Matt and I were looking back for an older photo earlier this week and came across some of these in the process:

Reuben, three months old

Reuben, four months old

Reuben, 1 year old

These are all Reuben before. Before his seizures started. Before we knew he was delayed beyond the limits of "normal." Before his ring (20) chromosome syndrome diagnosis. Before.

And every time I look back at any photo of him, my mind immediately classifies it as "before" or "after." So much of my life is classified as "before" or "after" his diagnosis.

It is hard to describe the sharpness of the sorrow that slams into me when I look at these darling, smiling pictures of my baby boy. Please don't get me wrong. I love this boy now probably even more than I did then, but you never realize how many dreams and expectations you have for your children without even realizing it. Things like talking with them, like watching them grow up and read books or play with friends or on sports teams, or sing with the children's choir at church, or some day learn to drive a car, or see them start developing interests and skills that will serve them into adulthood. It's not that these things can't happen for Reuben (well, some of them, like driving a car, never will, barring a miracle), but they absolutely will not look like what my unconscious picture of them before looked like.

Reuben is a HARD child to care for. There are very few people outside of our immediate household who fully understand what that means. Every once in a while someone who is close to us and sees him frequently will see something and say to us, "Oh. Now I get it when you say that Reuben is hard," and it will be in response to such a relatively minor, short-lived episode that far from being comforted, it makes me want to shout, "You have no idea!" And yet there is comfort in it, too, when someone sees at least a glimpse of the challenges that this boy brings. The 24/7 altertness for seizures is pretty obvious. Matt and I haven't slept well in nearly four years. People often tell me that I look tired. "Why yes, I am. Thank you." I woke up this morning after two good nights in a row and honestly asked Matt why I still felt so tired! He reminded me that two good nights doesn't make up for years of mostly rough nights. And, that a night when you've been up with Reuben twice and up with 'Vania twice, so four disruptions to your night doesn't really count as a "good" night to most people.

Reuben screams. He screams when he's excited about something. He screams at you when he's upset. He screams just because he can. He screams loudly. ;) The screaming gets to Matt sooner than it gets to me, but it can still wear at you to live with screaming all day long.

Reuben bangs things. He bangs the door when you tell him he can't go out. He bangs his head on things: the door (after you tell him not to bang it shut), your arm (when you are physically guiding him away from something - I have a permanent low-grade bruise on both of my forearms. It's always just a bit tender.) He bangs the spoon on his plate, the table, his teeth. He bangs things on things - he can't just set something down, he has to throw it down. Gentle, Reuben is a phrase that gets thrown around a lot here - gentle with your voice, with your head, with your hands, with your feet, with your toys.

And he's mostly oblivious to the unacceptable nature of his behavior. It's (usually) not that he is being "naughty" but is rather just the way he works, the way his brain works. It's who he is.

Anecdote from the Fair. Grandma (my mom) is taking Rinnah to the potty. Dad is getting Sweet Martha's cookies with Owen. I'm nursing 'Vania and feeding Krassi. Grandpa (my dad) is "on" Reuben who is excitedly (think screaming) exploring around our bench, and as usual, has no sense of staying close to mom. He takes off running toward the Grandstand (screaming! though happily...) I call to him, "Reuben! Reuben! Look at mommy. Reuben, look at mommy. You need to come here!" He turns and looks at me and holds his finger to his lips. He's thinking "gentle with your voice." He's not thinking "Oops. I almost ran away from my family into a crowd of around 100,000 people and I don't know how to say my own name, much less any other information that would help a stranger find them for me."

There is no down time with this boy.

And yet, mixed in with all of this, somewhere in there, he's still the same little baby. He's different, too. The seizures and meds have changed who he is. But he's still my Reuben, and he hasn't lost the intensely relational qualities that we and others saw in him from a very early age. He can be screaming at me one moment, and snuggling up with a kiss and his sweet little close-lipped self-satisfied smile the next. But ultimately, even though those are beautiful things, I mostly just love him because he's mine. He's my Reuben. And although our unconscious expectations for him may not be attainable, he is showing us how to delight in many other experiences that we may not have taken the time to notice in a "normal" life.

How can I explain how much I love my Reuben...

...and yet how much I miss my baby?

Back at it

Matt's been getting regular time to work on the addition over the last week or so, with good results.

This photo is already out of date, because as of this afternoon, there is a first coat (at least) of mud on every single joint or screw that needs mud. That still means two more coats on almost everything, but progress is progress!

We now have only one hole in the ceiling in the link hallway. (Oh. You didn't know we ever had two? Well, that's a story Matt may share if he has time.) The big hole (access to the tiny attic space) is now finished. The truss spacing up there was so tight that we had to use the PTF (pound to fit) method to get it in. I think the screws were just decorative! No way that thing was coming out!

That's all for now. ;)