HAVE A FLIPPIN FABULOUS FRIDAY, EVERYONE

Colby is still sleeping and the nurse will be here in a few minutes. For now, I'm enjoying my morning coffee. Enjoying the quiet. Thought I would give everyone an update on how it is around here post surgery.

Colby is doing very well, as we would expect nothing less from the awesomely awesome, stud, amazing rock star kid that he is. He wore clothes yesterday for the first time in 3 weeks! The most he has worn since June 24 is his brief and maybe socks. We put some button down pj's on him. They were blue to match his glasses and he looked extremely cute in them, as evidenced by the pic below. We're still being very careful when we turn him, log roll precautions only you know. Still freaks me out to know he has 2 giant rods, multiple screws holding them in place at his neck and pelvis, and one giant incision running down the length of his back. He has been through so much in the last month. Every day I see him more and more like my pre surgery sweet boy. I was reluctant to believe it, but life does return to "normal" after spinal rod surgery, it seems. He still has a ways to go, taking one tiny step and day at a time.  

Colby is back on his home feeding schedule also. I was tired of screwing with Farrell bags, making up new feeding schedules every day. Trying to bolus feed him a little more each day. He has been peeing and pooping just fine and was tolerating his small boluses just fine, so I said screw it, we're going for it. Today will be the 3rd day we're making his food as normal and feeding him on his regular bolus schedule. Another "back to normal" item to check off the list.    

Colby is also sitting up more and more each day. It helps that the weather has been gorgeous around here lately. We take him outside and do some walks around the apartment complex parking lot. Slow and sure wins the race; surgery recovery is a marathon not a sprint. Yesterday he sat up one time for 50 minutes and another time for 40 minutes. I think that's pretty darn impressive. We sure don't miss putting that heavy, cumbersome back brace on Colby, and I'm certain he doesn't miss wearing the damn thing either. He wasn't able to wear his AFO's (ankle/foot orthotics) the whole time he was in the hospital because of his PICC being in his leg. He's back to wearing those again also. See, slowly, ever so slowly, getting back to our normalcy around here.  

The new nurse is working out well. He shows up on time. He dresses professionally. He listens when I show/teach him something. He's sweet to Colby. He takes his time and does his work correctly, yet he's not so slow I want to slap him out of the way and say oh forget it, I'll just do it myself. And yes, I've told nurses before they were going to have to find another gear, slo-mo wasn't going to cut it. He's doing so well, in fact, I decided to go to the pool here at the apartment complex. Haven't set foot inside that pool in 3 summers, so I thought why not. Lord knows I need some sun on these poor old white legs. Headed over to the pool at 2:45. Nurse leaves at 4:00, so that would give me just enough time to take a dip, lay out and dry out, get in a little R&R. The pool is right out the front door. You can throw a rock and hit it in case the nurse and/or Colby needed me. I walk in the gate with my iPod, book and towel, ready to chill out. The lifeguard says, uh, don't get in the pool. I take my lunch break from 3:00-3:30 and the gates will be closed during that time. Can you believe that shit?! The one time in 3 years I decide to enjoy the pool, and that dingbat needs to go on break. So I sat on the picnic table and patiently read my book. She returned promptly at 3:30, and I was able to get in a whole 20 minutes of pool time. Ridiculous. Don't know if I'm even going to bother with it today or not.

That about sums it up. Nurse is here now, back there giving Colby his morning meds. I have various "to do" things to get done today. Pay bills. Mail paperwork for Colby's school. Call and bitch out the nursing agency because we have NO nursing this weekend. Freakin' idiots. If you're out there is home health nursing land and have issues with getting proper nursing coverage, trust me, you're not alone. We deal with it and hear it all the time from other SMA families, too. But I won't let it get me down! I'm so pleased with Colby's recovery, and I'm so happy to have this ordeal behind us. That's all that really matters right now. So I'll keep smiling - TGIF everyone! Count your blessings - God is good!