Thursday, August 5: Update

A new win streak has started. Claire has broken the one day on, one day off pattern she’d started on Sunday with emergency services. It’s a small victory, but we’ll take it. We kept Claire’s feeds to much smaller doses the past two days and we haven’t had any reflux episodes. We are still on edge whenever she makes an odd noise while feeding, but our anxiety has been unfounded for the past two days. I’ll gladly continue the anxiety as long as this continues to be the result: it’s an exchange I will make.

We also continued our new routine of keeping Claire with us while she falls asleep. She relaxed in Autumn’s arms instead of Tiffany’s tonight. Autumn held Claire for a solid 30 minutes before politely asking, “Can you hold Claire now? I can’t feel my leg.” In addition to the pin pricks that comes with a sleeping appendage, Claire’s diaper had printed itself on Autumn’s leg leaving red creases and wrinkles. She’s a good big sister, and she wore her discomfort with honor.

Claire began her day at therapy with her first return to the pool since inpatient therapy. She enjoyed the water, though she still protests when her soaking time is interrupted with actual therapy work. Yet she perseveres.

We met with the orthotics group today to measure her feet range of motion. While we have seen improvement in her feet flexibility, we are still concerned about losing range as she continues to point her toes. The therapists started the first stage of serial casting today to make sure we protect her abilities. The casting involved the most strenuous stretch to date for Claire’s feet. In order to build the boots, the therapists have to get Claire’s feet as close to neutral as possible. Claire’s right foot has retained most, if not all of her range. Claire’s left foot, however, is tighter and has toned a little more. It’s not much, but it could deteriorate farther if not treated aggressively. When we started her evening stretch tonight, Claire expressed some cries of pain on her left foot. We think it’s a little sore from today’s casting session. So we took a break this evening and will check tomorrow to see how her foot feels. Overall, we’re glad she is getting the custom formed boots and believe they will help her maintain her range.

I’ve got some projects on the weekend’s docket. We received the standing frame yesterday and while it is used, it is in good working order. The cosmetic issues are easily remedied. I made an enjoyable trip to Home Depot today to get some of the repair materials and I’m all set for the work this weekend. I think I’ll just lay out my new tools and equipment in a row and admire them for a while before actual work begins. They’re just so nice to look at. But that’s not all the shopping I did today. I followed up the Home Depot visit with a trek to Fry’s to get an adapter for Claire’s new headphone set. I wasn’t satisfied with off-the-shelf headphones, so I ordered a studio quality set earlier this week. They’re pretty awesome. Claire likes them too.

Every day I’m reminded of how many people are pulling for Claire and I continue to be humbled. Thank you for your support and hopes. Enjoy your Friday!