Didn't realize it's been over a week since I lost blogged. I thought it was 4 or 5 days, so that goes to show you how with it I've been lately. Last Friday Mom and I took Colby to get his new glasses and frames. He's way overdue. His current frames are digging into the sides of his face. We went with the Miraflex frames. They're sort of rubbery and will be much more comfy for Colby when he's lying down. I've seen other SMA kids with them. Wondering why no one at the eye place has ever suggested them to us? They should be in sometime next week.
We didn't have much of a Memorial Day weekend. I worked on Saturday and Monday, so wasn't much time for anything else. Colby went to school this week Tuesday through Thursday, also rode the bus. I went to school with Colby and the nurse on Tuesday to make sure she was ready to fly solo with caring for Colby. I just sat in the back on the classroom to be there if he had any issues. Listened to my iPod and sorted through some mail. No problems at all. So Wednesday they went to school without me. Yep, Colby had a choking incident. I got the call while I was pushing my cart through Kroger. So I went to school, helped get things under control. Then I brought Colby and the nurse home. Thursday went much, much better. No Colby-is-choking-you-need-to-get-here calls. Next week he'll go to school Tuesday and Wednesday (nurse can't go on Monday), then Colby will be done with school year.
So Cincy ortho nurse called last week. We have a new VEPTR surgery date. Guess when? I'll give you a hint. The month does NOT begin with a J. I'm so upset. It's August 7th. The nurse said we're at the top of the cancellation list. I know it sounds horrible, but maybe something like what happened to Colby will happen to some other kid and we could get their spot over the summer. Colby's school year starts August 20th I think. I'm sick that Colby, once again, will have to miss a bunch of school, especially at the beginning of the year. But, once again, what the hell can I do about it? Nothing. Absolutely nothing. It is what it is. Several people have said, well, August is better than September like they originally told us. Yeah, I suppose so. Oh, and even better, we'll have to repeat his basic labs, MRSA screening and EKG. These have to be done 90 days within surgery, and of course August is way off from when we had all this crap done originally in April and May. Gotta love it.
I'd love to blog something cute, funny or entertaining for you. But really, I got nothing. Getting Colby back to school is awesome - there is that. Got my carpets cleaned last week, meaning Mom and Kenny came over and did it while Colby and I were at school last Tuesday. I do love a clean carpet, and trust me, they were stinkin' filthy around here. So I'm glad that chore is done. Colby and I did absolutely nothing yesterday. We needed a day like that. I'd love to get him outside today and let him practice power chair driving, but it keeps raining off and on. He has a new thing when he drives. He used to love to go into the menu mode, then move the chair elevator up and down. Move the leg rest in and out, etc. He hasn’t been doing that much lately. Now it's spin in circles to the right and drive backwards. And when I mean spin, I mean spin, spin, spin, spin, spin. He'll drive/spin to the right for a few turns. Stop the chair. Watch the direction arrow go all the way around through reverse, left turn, menu mode, forward, then right turn, then spin and spin to the right again. Kid cracks me up. I'm very pleased he is watching the direction arrow. He totally gets he is controlling it, and is very capable of controlling it. Now if we can just get him to take some interest in driving forward! Maybe he'll take in an interest in that soon.
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