You find yourself on a Saturday morning pushing your son out of the mud, in his wheelchair! His power wheelchair at that, which weighs oh I don’t know, over 300 pounds, plus his big 70 pound butt sitting in the chair. Can you say big giant clusterfuck?! Colby was in the parking lot practicing driving. He kept going over by the grass. I'd turn him around, he'd go over by the grass. I'd turn him around, he'd go over by the grass. You get the picture. Then I finally thought, oh what could it hurt. BAD thought. I forgot how much it had rained and sure enough, he got stuck, as in wheels spinning, wheelchair not moving. I couldn't believe it. So what else could I do but push him out? Then of course I couldn't bring the wheelchair inside because it had mud caked all in the tires and little tire grooves. So I rolled Colby's bath chair outside. Loaded him onto the bath chair. Brought him inside. Then when Dad came to visit, he sat with Colby while I went outside and washed all the freakin' mud off the tires. Yep, that's my little redneck boy, loving that mud already, lol.
Actually Colby's driving skills have improved lately, for the most part. You can see how he is intentionally working the stop/go and the turn/stop switches. Then there are days when he intentionally tries to run into the van. He got put into timeout last week for doing it. I told him, and told him, and told him, STOP trying to run into the van. He would get so close I'd have to hit the attendant switch and turn him around. I finally said, okay kid, do it one more time and we're going inside. Sure enough, there he went, straight for the van. So I drove his butt inside and made him sit in the living room in the quiet. No TV, no radio, no nothing, for probably no more than 5 minutes. I keep telling him that if I thought he was dumb I wouldn't even bother, but that I know he is smart. But today he did a nice job. That kid knows exactly how to push my buttons.
He's doing great with eye gaze, too, if and when he wants to do something. He loves to go to the holiday page and he'll pick over and over "leprechaun" and "jack-o-lantern". What the hell?! Leprechaun. Leprechaun. If I had a dollar for every time I've heard that word I could buy 15 new vans. I know he does it just to irritate the piss out of me, and it works! Amber, his rock star speech therapist, was working with him the other day. He was doing some amazing stuff on the eye gaze. He was navigating through pages, doing things he has watched us do, but we've never taught him. It really was something to see. Lately he has been using a 45 layout, there are 45 squares, or choices, on each screen. Amber tried a 60 layout, which of course had smaller pics because there were more on the screen. Colby did awesome. He was able to target them and make the same choices as he did on the 45. If he's in the mood, he can really work that thing. But most of the time, I think he sees it as a big toy and a way to "leprechaun" his mama into a frenzy.
Tomorrow is the first day of school for Colby and I am a complete nervous wreck. I've double checked, triple checked everything. Everything that runs off a charge is charging. I called transportation last week to verify they know Colby's schedule. Went to his school today and dropped off some things he'll need. Made sure Apria delivered his oxygen concentrator to school, because let's face it, I've lost all faith in them to do anything right. But surprise, it was sitting in the nurse's office waiting. Colby got a haircut Friday. He got a bath tonight. Now we'll go to bed early and get geared up for another school year. This one has to be better than last year's. It just had to be! All I can keep thinking is how he only got to school 2 days last August before getting sick. Two stinkin' days! Then he spent 39 days in the PICU. That hospital stay was horrible. One of the worst. Stuff like that just can't happen any more. I mean I guess it can, but I'm hoping and praying really hard it doesn't. This trach just has to help Colby with his endurance, respiratory stability, secretions, etc. No use worrying I suppose. It's gonna be what it's gonna be. Which is fabulous, right?!
Okay, off to brush Colby's teeth and get him in bed early. Big day tomorrow.
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