Saturday, September 18: Update

This week was all over the map. Some good, a lot challenging. We felt we were making small gains in the sleep department; this week was another set back. We wish we could pinpoint a single cause. We can’t. We suspected it was the reduced Chlonozapam dose. We’re not as confident it was the culprit now. What we do know is that we’ve spent the last four nights making slight changes to Claire’s sleeping practices, hoping that one will work and Claire will again sleep soundly through the night. At 2:30 AM last night we think we discovered a method that will work. We’re rolling it out in earnest tonight and , fingers crossed, we hope it gets Claire the sleep she needs.

Thursday’s therapy session went well and we were sent home with a goody bag. Claire’s long-awaited custom boots were inside. We don’t have to use our hybrid hiking boot-splint boot solution anymore! The custom boots work like a charm: no chaffing or skin breakdown and they keep her feet in a natural position. While her left foot has improved the most and falls to a natural position most of the time, her right foot still breaks in slightly. These boots will help alleviate the stress on her foot and lateral calf muscles. We’re very happy to finally have them.

Claire continues to improve her neck strength and is holding her head up at more aggressive angles and for longer time periods. We do a number of exercises on the large fitness ball. Her focus and determination are apparent and reflected in the degree of fatigue she shows when she gets a break. We are very proud of her work ethic and spirit.

Autumn and Heidi made cookies with Nana today. Autumn used the cookie project to cap off her earlier efforts. Autumn has decided that her favorite actress is Claire Danes. Autumn drafted, edited and finalized a fan letter for Ms. Danes today. Autumn hit on a number of points, however, her most potent inquiries were about Ms. Danes’ marital and education status. I am tasked with finding the correct address to which to send the letter. I’ll make it tomorrow’s project. My reward will be cookies.

Aside from contacting celebrities, baking cookies and exercising Claire, it’s been a relatively uneventful weekend. We hope your weekend is bringing you needed rest and relaxation. Thank you as always for your support. Sleep well!