Thursday, September 2: Update

While the weather in north Texas has changed, not much has shifted since the last update. Claire continues to work hard day in and day out. Her efforts are paying off in absolute muscles strength: she doesn’t direct a lot of purposeful movement, but when she doesn’t want to do something, she’s built up formidable strength to resist. Her abs and legs are remarkably strong and her trapezius muscle is ripped. When we place Claire on her stomach now, she can hold her head up for prolonged periods of time just by tensing her trapezius. While this is impressive compared to what she could do two months ago, she still struggles to raise her head from a relaxed position. All in due time.

After six weeks of back and forth with the manufacturer, Claire finally got her plush, memory foam bean bag today. It was a happy day for us all. Propping her up with pillows has become a more difficult task: Claire has used her aforementioned muscle strength to shift weight unpredictably. So placing her on the couch is not an option anymore. We ordered the bean bag so that we can prop her up safely and ergonomically. And now we can. It’s pretty cool and a lot bigger than we expected. We like it.

Tomorrow is the second day for horse therapy. It’s quickly becoming my favorite day of the week for Claire’s rehabilitation efforts. I only have one data point from last Friday, but Claire’s temperament was so amenable after the session, I’m hoping it’s a trend beginning.

The rest of the family continues to charge forward, though everyone has a hint of fatigue in their shoulders. I often wonder when we’ll have a chance to recuperate some of the sleep. energy and resolve lost over the last three months. I can’t imagine when. For the time being, I feel that every minute is an opportunity to learn something new, work on Claire’s motor or cognitive skills, or try a new tool to get her further down the recovery road. I know it’s not a sprint. But I can run hard and fast for a pretty long time. I’ll keep doing so until my body makes me stop. I don’t see that happening in the foreseeable future.

Thank you for your prayers and support. We hope the coming Labor Day weekend treats you well.