Smorgasbord

A quick glance over my last few (rather sparse) blog posts reveals that it has indeed been almost a month since I've had a chance to update on how Krassi's doing! So I thought today, Thanksgiving, was an appropriate day in many ways to give you a smorgasbord of tidbits on how he's growing and settling in while my little ones nap, my big ones play with Grandma and Grandpa, and my turkey slowly roasts in the oven.

We had a perfectly lovely fall here in MN, so even in early November we were able to spend some bits of time outside.

Krassi still loves swinging. Evania is big enough now (when she's wearing a snowsuit) that she can swing, too!

 Krassimir and 'Vania continue to be the very best of friends. They are ALWAYS together, and that's only partly due to the fact that I usually sit down with her near wherever he is when she gets up from her naps. They really do seek out each other's presence no matter where they are, and they like to be close. A year ago I certainly couldn't have imagined how much these two would enrich each other's lives.

on the floor in the kitchen

'Vania will even get herself sitting on Krassi. This happens quite frequently - often enough to know it's not accidental.

The same day as the above photo (look at the clothes), but in a different room of the house. Notice that she's chewing on his socks??

And then sometimes I have whole piles of children laying around on the floor! This is what kept me company making supper one afternoon.

There those two are again, and notice how she's climbing right up on top of him?

She thinks it's pretty funny, too!

Different day, different room, but the same two buddies getting into trouble together. ;)

And when it's time to do laundry, Vania and Krassi both get to be my laundry-basket-sitters because the old basement floor is just too icky to be used for anything but feet. ;) Reuben, however, is pretty good on his feet, and is only in the basket because that was his best vantage point for seeing into the washer. (wa-duh! dow)

Krassi started occupation therapy about two months ago, and it has been SO good for him. While physical therapy was something we started with him as soon as it was possible after getting home (I think it was his second week here!), we were slow to introduce occupation therapy for a variety of reasons, and even though he's making incredible gains through the work he's doing with his two therapists, I have never once doubted our decision to wait. One reason that he's been able to make so many gains is, I believe, because we spent those months giving him the security of knowing he was loved, and I think his awareness that he has a mommy has given him the ability to branch out in many ways that he couldn't before that was firmly established.

His therapists are working with him on very basic things - posture and core strength - but also are working through a variety of different reflex exercises to help him build his awareness of his body and boost sub-conscious responses to different stimuli. (I'm very aware while typing this that Reuben's OT occasionally reads my blog and I should really have her proof this in case I'm explaining it way wrong! So Kelsey, if you read this, feel free to correct me and I'll revamp what I've written here!) ;) Some of the exercises they do seem kind of unusual, but after what I've seen them accomplish with Reuben last spring, I am eager to get on board with ones they think will benefit Krassi!

Krassi's sitting ability is greatly improved. I can now sit him up on a low bench like this and leave the room because he knows how to get down safely. When he first came home, and for a good amount of time after that, his best method for getting down was to raise his hands above his head, close his eyes and hope for the best (which didn't usually end up being what he got.) To see him learn enough about gravity to know that he will fall if he lets go (you never learn about things like that when you spend 99.5% of your life in a crib!) AND learn to maneuver his body to avoid the fall is incredible to me.

And check out these feet!!! While they look far from normal (especially if you get a 360 degree view), there is NO WAY he could have sat with both feet mostly flat on the floor when he first came home. This is more PT and braces than OT, but captures so much about his growth over the last year. Even the fact that he knows he has feet and that they can be useful to him is new for him. These feet have had their muscles, and the muscles of the legs they're attached to, stretched and worked and strengthened enough over the last year that they can do this!! I'll have to look and see what I can find of pictures of his feet before...

There. This works. Can you see the difference? This was one of the photos we were given upon requesting his file from the adoption agency when we were looking into committing to him.

Here's another sitting one - I like this one because you can see a bit of how hard he has to work to sit up - especially when he's doing it one-handed. Look particularly at his feet which are all clenched, as is his left hand white-knuckled on the edge of the lego bin.

And it's down!!! Success.

This was a beautiful surprise to me last Sunday - typically he's only sitting on the bin if I've put him there. His preference is to belly-surf on it. ;) But on this day he had chosen to get himself up into a sitting position! This is the first time we've ever seen him get to sitting on something other than the floor, or something really big like the couch. Don't you love how he smiles for the camera??

This one isn't quite as nice looking, but is a better representation of how hard he has to work to not only get himself up like this, but also to keep himself there. This boy has so much self-determination! And there's nothing like some good grunting-faces to help you work just a little harder.

One advantage of having the new basement mostly finished is that we can finally hang our swings indoors! Way back in the design stage at the suggestion of Reuben's PT, we talked with our structural engineer to make sure we had a place where the structure was sufficient to carry the loads of some more heavy duty swing equipment. Happily, the two main beams in the basement that support either side of the stair are more than adequate for the job, so now that we're ready down there, we had him size some eye bolts, and now have the beginnings of an indoor play/therapy room! This is just our outdoor swing-set swing brought in, but we've got another one on order that will let Krassi and Reuben do some of the exercises that they do at the therapy center right here at home.

[At this point my Thanksgiving Smorgasbord has now become a Day-After Left-Overs post instead, because my little ones have woken up, Grandma and Grandpa have gone home, and the turkey is roasted, eaten, and the carcass is now sitting outside of the garage in the big Minnesota Refrigerator/Freezer. Oh well. Onward!]

Other big news around here is that Krassi is being fitted for a wheelchair just his size. We've been very grateful for the long-term loan of the stroller that we use when we're out and about with Krassi, but a wheelchair will give him the ability to move himself around. Getting a wheelchair, it turns out, is a drawn-out, lengthy process. First, Matt and Krassi met with a physical therapist at Gillette at a "joint seating" appointment, meaning that a rep from a medical supply company was also at the appointment. Here they discussed all sorts of options, and together settled on which basic model of chair they thought would be the best fit for Krassi. The next step was to try out a loaner chair for a week, but the waiting list on that was so long that it took almost two months before Krassi's turn came. That was two or three weeks ago. A different rep came out with a chair and a few adjustable options and spent an hour tweaking and refining to get it as close as possible to what we thought would be a good fit.

Here's Krassi giving the loaner a trial sit.

We got to keep the chair for a week, giving Krassi as many opportunities as we could to be in the chair and work with it. Here's Daddy and Krassi testing it out that first day.

That night we made a few minor adjustments to the back - Krassi's core strength is so poor that sitting upright is really hard for him, still, and the harness they provided, although good in concept, does not give him the support that he needs. But guess what - smart little boy understands that those wheels work to move him around! He's got a long way to go to learn exactly how to move them to get where he wants to go, but we're pretty sure he'll get there. His ability to use his left hand has increased so much in the last two months, and if that continues, it will serve him well. Getting both hands to work in a coordinated fashion on the two wheels will also be important for him to learn  if he wants to predictably go in a straight line.

Big boy so proud of himself! And sitting really nice and tall in this one.

Not quite so straight here - you can see the potential problem: as he tires, he slumps forward, and then the harness, instead of supporting him, instead slowly chokes him. His face will start turning red, and the veins in his neck start bulging, and we'll remind him, "Sit up, Krassi! If you sit up straight it will feel better and you'll breathe better!" But we found we usually just removed the harness entirely. He slumps forward a lot, and has a harder time moving the chair, but it still gave him a chance to try it out and sit upright. Guess who slept really hard this week!

After our week with the trial chair, the first rep came back to talk over things with us, and now we wait for things to process through insurance. That should take another 2-3 months, and then Krassi will have a chair of his own!! We're looking forward to when he can have the increased mobility and new perspective on his surroundings that a wheelchair will offer him.

Probably my favorite part of how Krassi has grown over the last few months is in his willingness to accept my affection. We've known all the way along that we have had a much easier road with "attachment" with Krassi than many families/children have, but it's still a road to travel, and not something that happens over night. I've seen especially with me, his mommy, that he has made some significant gains this fall. One way we've noticed this is that he has been working with his therapists this fall without my presence for the whole time. We worked very hard from the beginning to have me be very present during all of his sessions, not only for the take-home benefit, but even more so he could learn that I would always be there for him, and that he would learn to love my voice and my praise over those of these other people who would be working so closely with him. It is encouraging to me that he is just fine with me NOT being there (whereas before in the earlier stages of attachment he would be unsettled if I was out of his sight for a few minutes) AND that when I do join in on his sessions, he just beams at me as he gets to hear my appreciation of what he's working on. His whole body beams when I praise him.

And then there are moments of even greater closeness that are becoming more frequent this fall. We had a mild bug run through the house, and on one of his down days let me snuggle him up, and he stayed there happily for quite a while, sometimes resting his head on my shoulder, sometimes looking around at the activity, but all the while accepting and seeming to enjoy my embrace.

Krassi with a fever snuggling with mom.

At fairly regular intervals (roughly once a week), we've had an evening when I'm reading to Owen and Leah when the younger kids are in bed, and if Krassi's still up, I'll pull him up onto my lap while I read. Somehow he seems to know that this is another notch up on the intimacy scale, and he has not yet learned to like it. My heart aches as I hear him cry while I hold him in a way that is different from any other cry. I don't really know what goes on inside his little head, but my best guess is he's mourning something that he may not be fully aware of himself. He sounds so lost and alone, and my heart breaks as I think about all of the hundreds and thousands of nights that he spent the day alone and put himself to sleep alone.

This week my parents were in town for Thanksgiving, and it's really fun to see how Krassi remembers and enjoys Grandma and Grandpa's visits. He took an especial liking to Grandpa this time around. They've always clicked, but over this visit, Grandpa couldn't sit down within sight of Krassi for more than a minute before that little guy was pulling on Grandpa's knees asking to be picked up. The last night they were here Grandpa and Krassi were "wrestling" and Krassi was laughing so hard he could hardly catch his breath! It is so special to see him not only deepening his connection to me, but at the same time broadening his affections to others who are a close part of our family. This first year home has been one of grounding for Krassimir, and I have a feeling that from that base he's going to blossom in many more ways over this next year.