SQUEEZING IN AN UPDATE, THEN BACK TO BEING SUPER MAMA

Colby is off to school. I've got a load of whites soaking in the washer. Working on my 2nd cup of delicious coffee for the day. I have a rather long list of chores and "to do" items that need attention, which I'm feeling a bit stressed about, so how about I spend some time in Denialville and just blog instead?

Colby is doing well, doing great actually. He's been able to spend significant time off his vent. The other night he stayed off almost 2 hours. Way to go Colby stud! I attended his IEP meeting this past Monday. Okay, let me just say up front, I hate IEP meetings. Always have. Nothing like seeing your son's disabilities listed and put in print. But hey, we can't help him and adapt accordingly unless we identify his strengths and weaknesses first, right? We've carved out some time each day at school so he can practice driving his power chair, and I'm happy about that. We also decided to try some homework, which is something he's never done in the past. I think it's a great idea, especially since he doesn't go a full day and misses lessons. I've been working with one of his nurses, teaching her how to use the eye gaze, put in on the floor mount, etc. I'm hoping on the nights she's here she'll be able to help me get his homework done. It's about time people started having higher expectations for Colby, and about darn time he started meeting those expectations, or at least try. I wish I could take a week or so and work on nothing but his eye gaze. There are so many cool things that we could program on it. It's an amazing machine, does everything but make you a PB&J sandwich!

Also been working on getting Colby's pre-surgery appointments made. He has an ophthalmology appointment scheduled next Friday. That has been scheduled for a year. I've noticed Colby crossing his eyes lately, especially when watching TV, so we definitely need to keep that appointment. With the pre-surgery stuff, he now has 3 extra appointments/trips to Cincinnati in addition to the eye dr. I'm trying to get it down to 2 extra, just really hard to get all the doctors scheduled on the same day. I guess we'll do what we have to do. Colby's VEPTR surgery is only 60 days from now, and believe me, I'm totally freaking out about it. I would give anything not to put Colby through this. Just thinking about it as I type this upsets me and makes me tear up. He's doing so well, I keep thinking he doesn't need this surgery, he'll be fine without it. But he does need it. He really does, and that's the bottom line. So it's time for me to suck it up, put on my big girl panties, stay strong, and do whatever it takes to get Colby through it. He can't see me upset over it, and he won't.

Took Colby to the St. Patrick's Day parade over the weekend. As you can see from the pic, we were all decked out in green garb, ready to get our parade on. One of his nurses and my dad went with us also. I don't have a stitch of Irish heritage, but have always enjoyed decorating for St. Pat's, making corned beef and cabbage, and drinking a couple green beers of course. Colby has a wee bit of Irish in him through his daddy's side of the family. Usually the weather is crappy for the parade, but it was perfect this year.

Time to wrap this up for now. I need to go to Kroger and pick up some prescriptions for Colby. Also need to make a few phone calls, my absolute fav thing in the whole wide world to do, and fill out new patient paperwork because I'm going to see a new endocrinologist tomorrow. She comes highly recommended by some of my Facebook friends, so we'll see.