Sunday, June 28th

Hello out there...

Well this weekend's post is mostly Calvin.

So, Calvin's about 27 months now. Over the weekend, we've been looking at him as he is now, where he needs to be, and what we can do new for him.

The first movie down below is of him eating.

This is one of his strongest areas, developmentally.
















For those who don't remember or weren't here for it, eating was his first major accomplishment. It was achieved mainly because Gosia didn't listen to the nurses and insisted of trying to nurse him. This was one of the reasons he doesn't have a feeding tube, which has greatly decreased the risk of infection for him.

For his whole like, the feeding tube has been an option, but we've always stayed clear of it, viewing it as a last resort. While still in the ICU, Calvin nearly died twice from infections, so Gosia has always worked extremely hard to create the proper diet for him and his needs so that proper nutrition would be taken care of.

Months ago, he had a series of what we view as allergic reactions to his powdered formula. The formula reacted with some of his other problems, and even though it's hypoallergenic, he was vomiting constantly, couldn't hold anything down, and lost a bunch of weight before we just stopped giving him the formula and switched to people food... Lots of rice, beans, lentils, chick peas, and fruits and vegetables.



So, he made the transition from nursing to bottle to semi-solid foods quite well. He had some pretty severe gagging issues a while back that he's more or less overcome. He's teething again now, which makes it hard for him to eat, but it's no where near the problem it was a year ago... He's come a long way with his oral sensitivity problems.



Now we're working on just feeding him. All his routine foods are mashed or blended... A typical meal would be rice, beans, and a vegetable or two blended together; or his fish soup which is rice, fish, and vegetables cooked and then blended together.


He can eat yogurt as is, and pudding too. Sometimes Gosia will mix grated fruit or the juice from an orange to his yogurt... things like that. The more diversity in his diet, the better for his development.

But back to the movie... He can eat a number of solid foods... he can bite off chunks of banana and chew that well... the movie is of him eating away at a slice of orange. He can eat chunky peanut butter and, as I discovered yesterday, corn flakes.

We're also working on drinking through a straw. He can do that pretty well, now. That's really difficult for a lot of brain injured kids. He can suck well, and usually swallow what he gets. There's a bit of leakage, but he gets the concept...

One of the things we're facing right now is the wall we're up against with his mobility. He can interact very well with his environment, and he should be able to crawl, but isn't doing it. His therapists at the hospital are good and he has gotten stronger, but he doesn't see the point of getting from point A to point B. We tried all kind of motivational techniques, food, love, etc... Maybe it has something to do with his Agenesis of the Corpus Callosum...

We think it's partly because he's already come farther than he ever was supposed to come developmentally... and now he needs to make another leap forward.

Right now, at this stage in his life and development he's especially prone to developing psychotic issues-- mainly because of frustration and stress, brough on by an inability to deal with his surroundings, interact with his surroundings, etc. So, we're working on pushing himwith his mobility issues without stressing him out. Personally, I'm not too concerned about his walking. I see it as secondary to his happiness.

He could advance to be an expert runner, but if he gets psychotic issues on the way and has to be doped up to deal with that, what's the point?

Right now, the anti-roll device stresses him out a lot. We've been exploring other options to get him moving over the weekend. But it's really all experimental. What do we think we can use that's out there and not out there that can help him.

One of the problems is that so much of the equipment is very expensive, so we're looking at building our own. When we first got here, we built him the incline floor (seen in the second movie) and Gosia's made him the checkerboard wall to stimulate his vision. She also made the many, many images that now dot the checkerboard wall. As his vision gets better, we can increase the complexity of the images.

So, now that his nutrition has improved, we can really get back to his mobility issues. Nutrition really has been at the front for us this past year. Like I said, a year ago he could barely take water and oatmeal without gagging and throwing it up. If he made it through the day without losing a meal or two, it was a big thing. And now he can even suppress the gag reflex if, say, there's a bit too much food in his mouth. He can make it through the gag and still swallow down the food.

Yeah, so next is getting him crawling and understanding "space." Movement from one point to another...

But, again, like I said, for me happiness in the most important thing. Without that, there's almost no point. And he is a pretty happy kid.... and very expressive... so, we just need to build on that!

Anyway, enjoy the movies, see you Wednesday.