Together again, and a new development

Hallelujah! Jay, Dom, Cosie and I are all under the same roof tonight. A permanent room finally opened up at the Ronald McDonald House, so we transferred from our temporary one into a one-bedroom apartment unit. It will be "cozy" with all of us sleeping in the same room, but so worth it to be together. Safety in numbers, I say.

The kids loved exploring our new digs, which they call the Old McDonald House, and they were thrilled to find out we'd be staying here for a while. (Dom said tonight, "I hope we don't accidentally go to San Rafael because then we wouldn't be at our new, real home at Old McDonald!") It is really a wonderful place. There are train tables and giant stuffed animals in the lobby and the family rooms, a big playroom, a computer room, and a really big backyard with play structures and playhouses. It was a beautiful day and the four of us ran around outside for a long time, kicking the soccer ball and playing.

It's such a relief to be so close to the hospital and still be together. We split most of today -- one of us with Cora and the other with Dom and Cosie, but we also had a few chunks of time together in between. This evening Jason was able to come back to the RMH for dinner and bedtime, and now he's back over with Cora and I am on track for an early bedtime.

Cora Bear had a pretty rough day today. It's hard to say whether she is just being slow to recover from yesterday's trip to the Cath Lab, or if it's more trouble with her heart.

If I could sum up the last few days in a word, it would be: odd.

Cora has been very sick in the past week, and as I've already shared, this was a week when we had to go up on meds and support measures. However, her most recent echocardiogram appears to show some genuine improvement in her heart function. That would normally be miraculous news, but her crappy week doesn't correlate with her improved function.

Test or no test, the only thing I really care about is how Cora looks -- and this week, she didn't look good.

But still, she had a decent echo. And doctors care about things like that.

These situations frustrate me to no end. I desperately want Cora to recover, but I want her to actually look and feel and be better. Not just test well. So, we'll see, I guess.

This wouldn't be the first time we've witnessed Cora improving. In early February we watched amazed as she was weaned off a ventilator and all her IV meds, and then safely transitioned over to oral meds. We saw her do incredibly well in those last two weeks we were at UCSF. We even talked about going home, and we discussed transplant as something that might be needed down the line. But then she declined very dramatically, went back on IV inotropes, and has struggled ever since.

In any case, if Cora's heart function continues to trend upwards they will likely challenge her to get off the IV meds again and transition her over to oral meds, and wait and see how she does. She may be able to get back to that same position we were in at UCSF, but only time will tell if she can stay there. As Jason and I, who have seen her every day of her life, know from experience, Cora tightropes on the edge of a cliff, and it's going to take a very prolonged period of real recovery for us to believe things are improving permanently.

Of course there is this dream I have, I know we all have, that she will really turn around and feel wonderful, when we can pack our bags, say "that was interesting, and thank you very much" to the doctors, and go on our way. But I just can't really go there right now.

One thing is for certain. The doctors are definitely scratching their heads about her. What can I say? Cora likes to keep it interesting. She is unique and special and wonderful, and above all, her own girl. She'll do it her way, and I think no matter how this ends she is going to teach us all a thing or two.