Waiting...

C.V. Lionheart (as my Uncle Greg calls her), is still here at Stanford, stuck for what has seemed like forever. She has now been infection free for 72 hours, but she is still stuck because there aren't any available beds at UC. I don't like waiting. I like things to happen in my timeframe. They never do.

In the past few days Cora has been breathing faster, and throwing up and sweating a ton. I'm not sure that it means anything, but she seems, at least to me, to be having a harder time. When I ask about it, doctors say, "that's just her baseline -- just what she does."Ahhh. Not the most satisfying response.

She started off the morning happy and looking good, but she seemed to feel worse as the day went on. She didn't have any energy to do her full physical therapy session (but I did snag a photo.) She was working pretty hard, so her therapist decided to give her a break.

Cora's team increased the dose on one of her heart meds today, hoping that will boost her a little. She got her weekly echo today and it seems stable. The squeeze of her heart, which had previously been her primary problem, is continuing along its road to recovery. There are still several other issues with and questions about her heart, but hopefully there will be more to learn about these when we get to UCSF.

I took Cora for many laps around the third floor in her wagon this afternoon. She gets pretty intimidated by the bright natural light through the window. Her poor little eyes haven't seen much of it so she spends most of her wagon ride squinting and rubbing her eyes, with a look on her face like, "whoa...this is intense." It's pretty cute. Eventually she just took a nap and we parked near a sunny window. I met another mother and chatted with her for a while. It reminded me that although out in the real world stories like Cora's are very rare, here they are a dime a dozen.

Welcome to the one percent.

This is turning out to be a very boring update, I guess. Another day of waiting and wondering, living in a hospital room. Thank goodness for my family and their constant stream of funny texts and phone calls and visits, and for Jason, world's best partner to be stuck with indefinitely in the waiting room.