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.

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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! ;)

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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!