Thursday, July 8: Update

Claire slept well last night. It could have been because of the long day full of intense activity. It could have been because she didn’t take any naps. It could have been because she didn’t get much sleep at all the night prior. That’s the fun part with Claire’s sleeping: it’s hard to isolate a single variable because so much changes day to day. I don’t think we’re really going to be able to nail down a solid sleep schedule until we get her home. We may get close but it will always be tenuous as long as we’re in a foreign environment.

Claire had a relaxed day today following her good sleep. We had our first equipment consultation today and ordered Claire he own wheelchair and bath chair. We also learned that we may get a standing rack at no cost from Texas Scottish Rite. We’re going to test it in the next few days and see how well it works.

Claire spent the rest of the day chilling out with Tiffany, Alex, Laura, Autumn and Heidi. Everybody reported that Claire was less agitated and subdued than days previous.

I couldn’t comment myself because I was back in the office today. After catching up with my team, I spent the remainder of the day talking with government agencies. We learned that we do not qualify for Social Security disability benefits, so our Medicaid coverage is contingent on a Texas children’s disabilities program. We have started the process which we expect to take two or three months before our eligibility is determined.

Government bureaucracy is only rivaled by insurance bureaucracy. Our case manager has been great; however, we still find ourselves wrestling with the intricate, small print in our policy and making sure that items are billed correctly. I want to make sure that we get a jump on potential problems early before they get too far into the billing cycle. While I don’t care for the number crunching, the insurance company serves as a reasonable proxy for my frustration and aggression from the whole ordeal. The ubiquitous insurance company and government agencies are my faceless punching bags on which I can loose my displeasure. It’s therapeutic for me.

Overall, things feel like they’re slowing down. We know they aren’t and attribute those feelings to the mindless rhythm in which we find ourselves. We feel like we’re in a sort or limbo just waiting for the next big event without knowing exactly when it will come. It’s draining.

We are looking forward to a nice night of sleep to recharge our reserves. My mom is with Claire tonight and we hope that they both establish a new sleep streak.

Thank you for your hopes and support. We hope your Friday caps off a good weak and welcomes in a great weekend.