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!