A plan for next week

I just met and chatted with a few families here at the Ronald McDonald House -- two of the children recently received liver transplants, and one, a heart transplant back in January. It was fun to talk to these kids, all of whom were teenagers, about their experiences. They were all of course wise beyond their years, and all certainly worthy of medals for incredible bravery and resilience.

Dom and Cosie were thrilled to make new friends with these kids and their siblings. They have seen so many children with tubes and cords and disabilities of all kinds, and they never seem phased by any of it. All they see are kids. Cosie went around hugging all of them and saying, "what's your name?", and then, "ooh, what a beautiful name!" after each one answered her. My hope is that the experience we're having here sticks with them throughout their lives and that they will innately be more compassionate and understanding of all the different types of people in this world, especially people who face disabilities. I really believe good can come of all this, and can grow into something beautiful.

It was great to be reunited with the kids after not seeing them since Sunday. They were so happy to see me and their huge hugs and laughter swelled my heart. Cosie said, "mommy, I'm so happy to see you! You lost me!" Ouch. If only this journey didn't involve so much pulling in so many directions.

It was a relatively good day at the hospital in Cora-land namely because we got what I wanted: a plan. Cora's team has decided to do a heart catheterization on her next week. This is a procedure which will be able to shed much more light on her heart function, because it examines the heart from the inside. At the same time that they measure different aspects of her function, the electrophysiology (EP) team will also do a study of the electrical system in Cora's heart. This is so they can learn more about her heart block and hopefully determine the best course to take moving forward.

As much as I don't like the idea of another surgical procedure for Cora, I do feel better knowing we have a plan and that soon we will know more.

In light of the cath next week we have delayed our move to UCSF. Although it could be done at either institution, it seems to be worthwhile to do it a Stanford, just in the unlikely event that something learned in the cath reopens the subject of transplant.

So after next week we will probably have a better idea of what's next for Cora and for us. For tonight, it's me and the kids at the RMH and all the joys of trying to get everyone to sleep at the same time in the same room. So far in the bedtime battle of kids versus mom, the kids are definitely winning.

P.S. Arguably the most important news of the day is that Cora received some new slippers to rival her bunnies. Photo documentation attached.