TOO POOPED TO PARTY ON THE 4TH

Took Colby to Cincinnati yesterday. Can you believe that crap, back to Cincy Children's so soon. But it wasn't because Colby is sick, thank goodness. This visit was just follow-up in the Neurology clinic. He sees a neurologist in Cincy twice a year and he was due. I almost cancelled. I thought great-googly-moogly, I just can't do it, drag Colby up there again, this time in 100+ degree weather, which none of us tolerate well. But we went and I'm glad it's over. Overall Colby got good reports. The dietician and I decided to tweak Colby's diet a bit, added more protein and more water. The neurologist thought Colby looked great. We talked a lot about Colby's current respiratory status post-trach surgery, his recent DEXA scans results, his upcoming spine surgery, etc. We're going to make an appointment to go up next month and talk with an ortho surgeon to get the ball rolling on the spine surgery. Yuck and double yuck. I have no idea when it will be, never if I had my way. But I know Colby needs it and I believe that once he gets through it, his quality of life will improve. Only time will tell I suppose. Then we left there and went to The Brace Shop to pick up Colby's new hand splints. After waiting 45 minutes, we were seen. And guess what, the hand splints were the wrong size. Oh fantastic. This was the 2nd pair they ordered for Colby. Mama was NOT a happy camper. They said oh, well we can have another pair next week. I said no way were we going to Cincy to pick up a pair of pre-fab splints. Get real, people. We have to go up in August for more followup appointments, pulmonary and bone clinic. So we'll either pick up the splints then, or they have a location here in Louisville and we'll go pick them up here. Whatever.  

We didn't get home until after 7:00 last night and we were exhausted! Dad and I got Colby in and unloaded the van. I fed Colby, gave him his cough treatment, did his nighttime routine and we went straight to bed. I told Colby it didn't matter what time it was. It didn't matter if it was still light outside. If we're tired, we're tired, so let's just hit the sack. He had no objections haha.

Today has been a great day! We now have a nurse who comes 3 to 4 days a week in the mornings/afternoons for an 8-hour shift. He's the only nurse that's ever walked in here and knew what a CoughAssist machine was! He was here today, and I'm comfortable enough with him by now to leave him with Colby. My BFF Kim picked me up. We started hammering out the plans for Colby's super spectacular, extra special, fan-freakin-tastic 10th birthday party. Oh my goodness, did you read that?! Colby is going to be 10 years old!! Hear me, 10!! That's oh I don't know, about 8 years longer than the doctor here in Louisville told me he would live. Ought to send that asswipe an invitation to the party, huh? I'm super excited about it. I can't wait to do something fun and special for and with Colby. Something that doesn't involve PICU's, hospital gowns, morning rounds, x-rays, etc. Nothing but family and friends celebrating the wonderfulness of the awesomely awesome Colby Michael!

We celebrated July 4th very low key. No way can I drag Colby out in this heat to do anything. Plus we're still recovering from the road trip yesterday. My stepbrother and his clan came over to visit, which was very sweet. And they brought Pizza King! Hang out with the fam in the AC and chow down on some PK, sounds like a perfect celebration to me. That's what's up with us lately. Going to bed now because 3:00 a.m. will be here too soon. Colby gets a cough treatment then. And since it's now 11:28 and a new nurse was supposed to be starting at 11:00 tonight and I haven't seen or heard from her yet, I'm pretty sure she's going to be a no-show. Better go get some rest before it's cough treatment time. Stay cool people, and I mean that literally!