THIS WEEK IS MORE THAN HALF OVER - I THINK I CAN, I THINK I CAN

I'm trudging through the week. That stupid headache I had didn't go away until Monday afternoon. That night Colby and I went over and had dinner with his nutritionist. She and I have become friends over the years. She is one of the sweetest people I've ever known, and you can't have too many of those types of individuals around. Plus she offered to get us Panera, so heck yeah I was in. Hello, Fuji apple salad! No onions, no tomatoes, of course.

The nursing agency is trying to jack around with Colby's schedule, and I'm not liking it one bit. The new day nurse was supposed to work Mon, Wed, Thurs and Fri this week. They called me last Friday and said they were pulling her from Colby's case on Monday and sending out another of his nurses to work. Yeah, another nurse who has worked nights only and doesn't know Colby's morning routine! But I agreed to it and just went in to work later once I knew the nurse was settled in on Monday. Then the nursing agency tells the day nurse they want to pull her off Colby's case AGAIN on Friday. WTH?! She was assigned to be Colby's full time day shift nurse. How is she supposed to learn Colby's routine and get better at taking care of him unless she spends more time with him? She stood up to the nursing agency and said absolutely not. She said you either send me to Colby's like I was originally scheduled, or I'm not working anywhere on Friday. Good for her. She's tired of them jacking her around, too. So now we're back to the original schedule and she'll be here the rest of the week.

Tuesday Mom and I took Colby swimming. That'll be his last time for quite a while. (Big sigh). Then once the night nurse got here, I headed in to work. Nothing like overwrapping hemorrhoid suppositories in a cold corner office at 9:00 at night. I was thinking ah yes, this is the life indeed. Actually I was really thinking thank goodness I have a job with flexible hours. There are not many places I could work with Colby's schedule, the nurses' schedules, etc. Then once the nurse got here this morning, I was right back to packing those pills. But the work week is half over. I hate leaving Colby, but Lord knows we need the money. Plus I won't be working for a few weeks in the near future, so time to go in to the hospital, pack those pills, and be grateful I have a job.

The spine nurse from Cincinnati Children's called today. She wanted to remind me that it was a week before Colby's surgery and that we needed to start his pre-surgery routine. I got a chuckle out of that. I felt like saying, lady, not only do I know it's 6 days before we go to Cincy, it's also 140 hours pre-surgery! The pre-surgery stuff is no big deal really. We just have to give him a bath every other day with Dyna-Hex antibacterial soap, put Bactroban ointment in his nostrils twice daily, and give him MiraLax to insure he has a BM every day. Even though we don't have to, I'm also putting clean sheets on Colby's bed after his Dyna-Hex baths. If there's anything I can do at all to prevent Colby getting an infection, I'll do it.

Then the conversation got interesting. The spine surgeon was discussing Colby in a pre-surgery meeting of some sort. They have decided to do a "final fusion" on Colby. Usually with spine rod surgery, you have the initial surgery, then have multiple surgeries after that to lengthen the rods as the person grows. Then once you're done growing, or I should say once your torso is done growing, they will go back in and fuse the rods one last time. I was excited because they were going to do this new technology on Colby for the lengthenings where they put in magnetic rods, then use a remote control to lengthen. No additional surgeries to lengthen. Pretty cool, huh? Colby would've been the 2nd patient at Cincy that the surgeon used this procedure. I was very excited that Colby wouldn't need multiple surgeries. Now I guess we don't even have to worry about that. It'll be a one-and-done! I'm trusting the surgeon on this decision. The only experience I have to go on is that of other SMA patients. I do know it's around this age that kiddos start getting their final fusions (Colby will be 12 next month).

So that's the scoop for now. Counting down the days and hours I have to work, and the days and hours before we head out for surgery. Looking forward to seeing friends over the weekend and spending time with my sweet boy. More blogging as soon as I have anything else interesting to say. But you know me, I can always think of something to talk/blog about. Sayonara for now, blog readers.