Wednesday, August 13, 2008

Where are we at now?

Well, we have scheduled surgery. It is going to happen on Veteran's Day, November 11th. Apparently Dr. E only operates on Tuesdays, and, according to my dad, ever the prognosticator, 11/11 was the best option.

Riley is still the same kid he was prior to the diagnosis 1.5 months ago. There are things, though, that we are discouraging him from doing. One thing was standing on his head.

Before finding out, Riley was always wanting to stand on his head. Marci and I thought nothing of it. Heck, there was one time I had him stand on his head and I fed him a cracker to show him food would get to his stomach, even upside down! We figured he was a 3.5 year old and enjoyed being upside down.

Well, after the diagnosis, that became a no-no. In talking to Rye, he told me that he did it because, in his words, it felt like a "soft monkey" when he was upside down. Evidently he did it to make himself feel better. We never thought of asking him why he did it before the diagnosis.

These days, Marci and I just keep a closer eye on what he's doing. We can't keep him from accidents, etc, but we do say no to somersaults and things like that.

Riley is still funny, happy, smart little Riley. He's really observant of his surroundings and has a memory like a steel trap, especially if it's about ice cream. Don't even mention it, unless you plan on delivering, 'cause he'll call you on it!

He's aware that he has some "owies" (I hate that word! It's not real!) on the back of his head and we've told him that he's going to have something done to him in the future. Don't know if he quite grasps it, though.

He's very interested in being able to drink like everyone else. Right now, it's Propel (powdered flavored mix) and Simply Thick pretty much all the time. Unless we get him a Jamba Juice or something similar (it's gotta be thick!).

You wouldn't think it's that big a deal, and to us, I suppose it isn't. We're used to carrying around a lunchbox with premade drink for Rye. But now, we realize that it sucks. It sucks bad. It's no fun to have to bring that crap around everywhere we go. It's no fun to forget it and realize that Riley has nothing to drink for the day.

Now, it's not like if he's dying of thirst and we leave his drinks at home that he can't have anything. We'll keep him alive by hydrating him, sure. But the problem is that he aspirates (the liquid goes into his lungs) and it makes him sound gurgly like he has loogies all day long. Plus, he can get infected as a result. So, all around, it's pretty lame.

Anyway, in the interest of brevity, that's it. Check back later for more.

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