Tuesday, July 27: Update

Today was Claire’s first day of outpatient therapy. Therapy was easy. Sitting in the waiting room was hard. We have not grown accustomed to the stares and whispers yet. We have to remind ourselves that Claire’s current condition is temporary. But Tiffany and I both have never craved attention. Even on our birthdays we don’t like parties; we are allergic to the spotlight. We are also acutely aware of Claire’s awareness and are protective about her. Being in public for the first time with her today was new and brought out aspects of our disposition that were previously foreign. It’s all so new and we haven’t had time to process or strategize for it. We’ll add it to the to-do list.

Heidi and Autumn have been taking turns working with Claire at home. A friend delivered a meal yesterday and tucked a copy of “The Little Engine That Could” with the delivery. It was a very appropriate and well-chosen book. We didn’t hesitate to read it to Claire. Heidi was nominated and gladly told the story to Claire, making sure to hold the pictures at the appropriate distance from Claire’s face.

We spent the rest of today devising new ways to work Claire’s feet into a prone position. We had looked at serial casting at OCH, but we didn’t pursue because the team thought that Claire’s Botox and phenol response didn’t require the casts. Now that we’ve gotten farther away from the injections, Claire’s feet still haven’t relaxed as much as we’d like. So today we tried lace up shoes inside her first set of splints. It worked. Even after removing the splints, Claire’s feet were more nimble and less stressed.

We got a lot of time to hold Claire today and comfort her. Tiffany still has the touch with Claire and enjoys holding her baby. Claire will hold Tiffany’s gaze for extended periods of time: it’s sweet to watch.

You will notice that the pictures I’m posting are now in color. I’ve decided that since we are now home, I will be transitioning all the images to full color. It’s a small gesture, but being under one roof again brings a little color back into our lives.

Thank you for your hopes and support.