Our Red Thread: August Antics

*click on pictures to enlarge

Lucy has had a summer of ever changing leg/foot wear. She's been wearing her kafo (full length leg brace) for seven weeks now. This change in leg wear (from cast to kafo) was harder than we anticipated. As I wrote in my last post, Lucy needs to wear her leg brace twenty three hours a day until at least October. It is taken off for a few short breaks throughout the day when we do her physical therapy exercises and stretches and during bath time. Skin needs to breathe and it doesn't like being against plastic for twenty three hours every day. That being said, poor Lucy's had several "issues" with her latest orthotic apparatus.

Skin that is rubbing against hard plastic causes skin breakdown, irritation, blisters and results in pain and discomfort. Thanks to Lucy's fabulous physical therapist's help along with some very kind and helpful professionals at an office in Hershey, Lucy's gotten the adjustments and tweeks needed to her kafo.

Ouch!

When we returned to Philadelphia in August for Lucy's next scheduled appointment with Dr. vB, we waited four hours (note that is four hours past our scheduled appointment time!) only to hear some hard to swallow news.

Lucy had apparently "lost ground"/backward progression from our previous visit. She was measuring as having a small contracture again. The details are too long and detailed to try and type out as to "how and 'why". The word "contracture" might as well be a four letter curse word in my vocabulary. While I had tears and was very sad to hear this news, I wasn't angry. That's unusual and not my typical response. Later, when I was in the elevator by myself, I spun my wedding band on my ring finger. There is a verse reference that is inscribed in our wedding rings. I recited the verse aloud. Romans 8:28 (a) - "and we know that ALL things work together for good..... I keep thinking about it and choosing to believe in it's truth. Lucy's physical therapy regiment had to change and her therapist is working hard to try and regain lost ground. The reality is we may or may not regain all of the lost ground.

There she is - our "show and tell" girl - ROSIE!
sporting her ex. fix.

Guess who's familiar face we spotted on a cart in the hallway? Rosie! She's still sporting her ex. fix. that Pop Pop put on! We were told she's already made several visits into exam rooms where children are getting the news that they too will need to wear an external fixator. It is our hope that seeing Rosie and being able to hold her takes some of the sting out of their news.

So while August was filled with many appointments, we also were able to sprinkle in a few family fun experiences. Here's a peek at some of Lucy's August amusements: