"Big Blue"

Because I'm slow sometimes, this post was started nine days ago, and is just now going to try to get out where the rest of you can see it. "This morning" (and by that I mean the morning of May 2, the day I started this post), we test drove a vehicle a friend found for us on craigslist. Its name is "Big Blue" and it's owned by a family with seven children and two big dogs who doesn't need it anymore as enough of their seven are getting old enough that they don't all need to regularly go places together in the same vehicle.

What we love about Big Blue is that it's BLUE and not white (I told Matt that if/when we needed to get an industrial size vehicle, I at least didn't want an industrial color). It *only* has 89,000 miles on it, which, for a diesel engine, is not that much, really, and, as a final touch, it's got the Mercedes logo on it that we think is so fitting for Matt, the Man-who-used-to-be-really-into-fancy-cars. (Frieghtliner and Dodge both also make the Sprinter, so those are other potential options, but not really as fitting as the Mercedes.)

 

We love that the current seats are slightly more generously sized than the "pack it all in" option, so even though we can't get full 11 or 12 capacity, we'd be able to still fit our whole family, even with losing some seating to a wheelchair lift and lock down, and do so in a VERY comfortable way even with many still in car seats or boosters. We'd always have the option down the road to swap out a 3-row for a 4-seater, for example, if it was ever useful. I love that it doesn't have the extra heat/AC package mounted on the top of the vehicle - even though that would make for increased comfort for the passengers in the back, it also increases the visual size of the beast, and knowing that a family with seven children has successfully used the vehicle in MN winters trekking back and forth to school, and for cross-country family vacations in the summer and they all survived gives me confidence that we could, too.

What we don't like so much is the rust, and really, that's what's putting us on pause for the moment. Matt's been talking to a body shop, and is hoping to get the vehicle over there sometime next week so the man he's working with can see it in person. I'm okay with rust visually, but even used, this is still a big investment, and once we put a lift into it, we will want it to last for a very long time - long enough that we'll be ready to downsize...to a mini-van. ;) So we don't want to purchase something so rusty that it will be incredibly expensive to fix, or is so far gone that we'll be dealing with gaping holes after a  year or two.

Ever since last fall when we test-drove the new one and got it priced out (at $50K! Yikes!!) we've been pushing as much money into our savings as we can, and mulling over our options. The dealership was willing to offer us decent financing rates, but after everything we've heard God directing us toward in not living with debt, and seeing the amazing ways he provided what we needed when we needed it to build the house and pay for all of Krassi's adoption expenses without needing to incur any debt, neither one of us was comfortable taking a loan for a vehicle. I don't know what we were expecting would happen, but we were both just...waiting.

So, to have our friend mention Big Blue on the same day that this happened, did not in any way seem accidental to us. Nor did the fact that after we emailed our inquiry through craigslist that weekend, and didn't hear anything for a few days, that on the day we finally DID hear back from the seller, it just "happened" to be the same day that Matt got a phone call from a past client whose invoice was months past due saying that he had just cleaned out his truck and found the envelope with our check in it stashed under the seat and he would be dropping it off in twenty minutes. And he did.

Sometimes I feel like such a child - that as I walk patiently, sometimes seemingly aimlessly, God is right there holding my hand. I just tonight finished reading a biography of a Christian woman growing up and living in Communist Romania, and am humbled by the surficial nature of the challenges of my life. While I am grateful for the sometimes painfully obvious ways He shows himself to us, it is also a reminder to me of how very undeserving I am of that care! And I pray that He will sustain my faithfulness even when it isn't so easy to see that He's working.

So that's where we're at - we have friends who are willing and ready (money and all) to buy our van from us. Even with that we still don't have the asking price for Big Blue, much less that plus whatever we would need for body work (we'd probably wait until the fall to save up a bit more), but the seller has said a number of times that he would like to sell it to us, and that he's got some flexibility with the price, so I guess we'll see what happens. If it's our van, we'll have enough for it!

Measureable progress

We recently received Krassi's new "plan of care" from his private speech therapist, and although I rarely pay too much attention to these for either boy because we already know the plan - keep on working to help these boys achieve the highest level they can in all areas of their development.

But there was one detail in Krassi's that stood out to me: one year ago, his expressive communication scored "solid at 3 months." And that was about right - he was able to communicate about as well as a three-month old infant.

This year, measured by the same scale, he's "fairly solid at 8 months, emerging to 12 months."

Understanding that the real story is quite a bit more complex than that, I'm still delighted that in the last year he's shown a six-month gain in his ability to communicate!

To be at a 3-month level at almost 10 years old, and a year later to be at 8 months, going on 12 months, sounds like a little boy who's most likely got the potential to keep moving in that direction!

We've been trying a variety of communication options for Krassimir - picture communication, vocalizations, "cheap talk" machines, and sign, and repeatedly, sign language is the method that seems to best resonate with his abilities. He currently signs "more," and usually it means "more" but can also mean "all done." (Yes, not very helpful.) We have seven other signs we're working on with him: all done, yes, eat, drink, my turn, music, play. Not a single one of these is something that he can do independently, and with much guidance, verbal prompting, and hand-over-hand assistance, we are sometimes seeing him possibly using 2 or 3 of them.

But I'm hoping that maybe another year from now, we'll be able to look back at this and marvel at how far we've come.

Krassi bits

There are quite a few nicely written blog posts floating around in the deep recesses of my brain, composed while driving, but the trouble is I never have as much free time at the computer as I spend driving around, so there they remain. Instead, those of you interested in following Krassi's progress will have to be satisfied with a few sound bites.

Bite #1: Krassi continues to spend two mornings a week at our private therapy center, doing speech/feeding, physical therapy, and occupational therapy. He sees two different OTs (one on Tuesday, one on Thursday), which is actually kind of nice because it provides a natural diversity in the approach. Because there are SO many ways that Krassi can benefit from OT, it's nice to have this blend of consistent variety. Although he is not thrilled here, it's actually a decent representation of his demeanor while working. OT is hard work for this boy, and not as immediately rewarding to him as PT is. It requires intense concentration, and is a nearly full-body work out for him to put a pile of 6-8 small bean bags into a bucket using his left hand. But he can do it, and we are seeing slow, but steady progress. Both of his OTs are also working heavily with him to "use his eyes." Although his eyesight tests out just fine, and when he does  look at something, it appears to be effective for him, holding eye contact of any sort for him is a significant challenge on many levels. Although we are definitely seeing steps forward on an emotional level in this regard, the simple act of looking at something - anything - is difficult for him, largely because there was so little incentive for him to look at anything for so many years. It is likely that the muscles themselves that move the eye and allow it to hold a gaze are weak from lack of use, and like his core, it's a bit of a catch-22. (He can't sit up because his core is weak, and because his core is weak, he can't do what it takes (sitting) to build his core muscles. I feel like we've reached a tipping point for the core strength/sitting dilemma, and expect him to make rapid gains in that area in the next few months, but it hasn't happened yet for his eyes.)

He's about as excited as he looks here. They didn't spend much time with him in here, but I was dancing between Krassi and his OT, and Reuben and his PT, and Rinnah, so didn't get too many pictures.

Bite #2: Krassi and 'Vania continue to be an interesting combination. She still loves to crawl all over him, and he really seems to think that's a pretty funny thing. Here she is trying to climb up onto his tray using the footrest. They still love to play the "I'm taking away your toy while you take away mine" game, which I don't think is going to last much longer, because it won't be long before 'Vania decides getting toys taken away isn't going to be that much fun! But it still delights me that they have each other - she, who has never known life without him around, and he, who isn't the "newbie" because of her.

On the topic of siblings, Evania isn't the only one who sits on Krassi! Reu's such a snuggler...and smart enough to drape himself over Krassi instead of sitting right on top of him.

Bite #3: The season for being outdoors has come again, and we've got the same challenge we did last summer - what's the best way to let Krassi play and be the most free to explore while still enjoying himself and staying safe? His "wipe and lick" trick with his right index finger is not as pronounced as it used to be (this may very well be due to some reflex exercises he's been doing with his OTs and us at home), but it's still there, and there are certain things that rubbing your finger across just really isn't a good idea (wood - slivers; concrete - scrapes and bleeding; dirt - just plain gross, especially when combined with the "lick" part of the game, and the icky factor doesn't deter him. He will sometimes get a pained, unhappy look on his face when he's got dirt in it, but does not seem to have any understanding that the source of his discomfort is his own doing.) Depending on what clothes he's wearing, he's also prone to scraping up his knees and stomach, again something that he doesn't have the cognitive ability to understand his role in the cause/effect picture, so he's dependent on us to protect him, despite his protest.

Playing in the shavings where Dad was cutting up a downed tree. He was able to do this for a short while.

But many days, this is still the best option we've got. He's still kind of confined, but our hope is that it's a little more freedom than being in a stroller - he can change position, sitting or laying, and scooting from one end to the other. But the question still remains - what is best for him? what would he like best? They're not easy questions to answer.

Bite #4: Look who's sitting on the stairs for an Easter photo? (The lack of eye contact on the camera here is less significant when fewer than half of the children are looking!) This photo's memorable for us because there's no Leah! She spent Easter Sunday in England with my mom and my sister and her family.

Bite #5: Bath time continues to be a major highlight for Krassi - I LOVE watching him wriggle with delight when I tell him a bath is coming up. No doubt at all that he understands what I'm talking about because he will pull himself across the floor at lightening speed to the bathroom when I tell him it's bath time, gleefully squealing all the way. As he's getting better at handling himself in the tub, we're able to have him and Reu go in at the same time, which is fun for both of them.

This is Krassi's first bubble bath! Because of his lack of caution around water, we didn't want to even introduce bubbles for the first while, but gave it a try on this day with great success!

Bite #6: This last photo just hints at what is still one of our biggest challenges. Krassimir enjoys our company, shows clear recognition of all of the members of his family, but is heavily guarded against anything that resembles physical closeness of an affectionate type. For a guy who is completely dependent on others for so much of his mobility, and is frequently being carried and held, he, without a doubt, knows the difference between being held for practicality and being held simply to be held, embraced, loved, snuggled. The latter he is highly resistant to, and it's worth a post of its own someday, but for the short term, this photo from our yearly family reunion weekend will suffice. Krassi seemed just off all weekend, and at one point was so tired he fell asleep for a short time while Daddy was holding him. I don't find it accidental that this happened once in his first year home with us, and I think three times so far in the first half of the second year, but the novelty of this is a reminder to me of the long road that bonding is for a child like Krassimir.

Notice that he's still gripping his toy? ;) Once you've got it, don't give it up for anything!

More wall photos

This is where we actually ended up at the end of yesterday's work.

The southwest corner coming along...

...and the east end - where the wall will be tallest. Matt says this is like working between a rock and a hard place. (ha ha!) as limestone isn't something you can just push on to get to fit if it's a little bit too big.