Thursday, July 29: Update

At the same time we seem to be stuck in time, we also feel like we don’t have any of it left. Before we know it, we’re looking up at the clock and it’s 11:00 PM and we’re wondering where did the rest of the day went. Sleep seems to be an afterthought, though we feel like the Sandman is always stalking us, lurking around every corner. It’s different from those first three months with a baby. Then we felt like we were the ones chasing sleep, and it was ever elusive. We couldn’t get enough. That’s not the way it is this time. I’m tired. But I feel other burdens and I fight the urge to sleep. I feel like I ought to be doing more. More research. More therapy. More focus.

This has always been the albatross around my neck. I’ve felt that any problem, issue or opportunity can be overwhelmed. Friends and family are amused with my approach to new hobbies. When I find something new to pursue, I go all out. I digest inordinate amounts of information, structure my own training regimens and immerse myself in the new culture. This is the last subject matter I would have chosen to pursue. It’s certainly not a hobby. My tendencies, however, are put to good use with Claire. I feel that there is always something new, something better that we can do for Claire, so I chase after it every day. But this requires a lot of time as well.

My sleep gets the leftovers. And it’s not a priority for me. Not yet. I will be soon, either by my own choice or foisted upon me when my body says “Enough!” I have a solid understanding that balance is the best approach, not only for me, but also for Claire and my family. If I don’t take care of myself, then it will be hard to take care of them. I understand that; but I don’t abide by it. Not yet.

While I may not be getting as much sleep as I need, Claire is sleeping like a pro. She is getting nearly 12 hours of uninterrupted sleep each night and her reserves are being replenished. She captures another one to two hours with naps during the day. Today I rolled her on her stomach for a while for a change of pace: she got so comfortable she fell fast asleep. We’re learning new methods to add variety into Claire’s routine so that she feels more comfortable and less frustrated by the mundane. Being on her belly was just one of our attempts. It’s nice when the experiments work and we discover a new tool to fight the malaise.

Claire wrapped up her week of scheduled therapy at Grapevine OCH today. She had another productive day and we learned some new therapies that we can utilize at home. We are pleased with the first week and her new therapists. They have been a great source for new ideas and they are proactive with Claire’s plan. We appreciate that and are glad we added them to our Claire Team.

Thank you as always for being a part of the Claire Team. We hope the end of the week is a good one!

Wednesday, July 28: Update

Claire had another positive day today. She was more calm during physical therapy than any previous session. We were surprised to see her do her exercises without protesting which was a first. Overall, Claire had a good day.

We are continuing to build our arsenal of gadgets and gizmos to further Claire’s recovery. Today we got a standing frame via eBay. The frame needs some cosmetic rehab but is in good working order. This will give us the ability to stand Claire up at home so her legs have to support her own body weight. The therapists have been eager for this and made us equally eager. It should get her in the next two weeks, and we’ll put it to immediate use.

Tiffany and I got out of the house for a little while today. We headed to a park and kicked around the soccer ball. It was nice to run around and get some energy out. I ended up getting a craving for fajitas afterward. Our friends had been telling us about a place in Coppell called Rosa’s that makes their own tortillas. It was 10:30 by the time we got home, but fajitas were worth it.

It’s been a long day, so we’re going to turn in now. Thank you as always.