I’m hoping to use this blog to connect with others who share a similar situation, to keep family and friends updated, and as a journal for my daughter.

I wasn’t prepared for this

I haven’t wanted to write a post because I didn’t have any news to share and felt that I would just sound like I was complaining, but...

On Wednesday, April 11th I made a run for it and broke out of the hospital just in time to pick Zoe up from school. It was the cutest...

It was very hard to say goodbye to Zoe this last Wednesday, April 4th. She kept saying she didn’t want us to go. I agreed with her. I...

I get to go on a spring break vacation. Not really, but I get to leave the state so I'm counting it. Because I have intermittent...

Today I received a call from Dr. Romfh the adult congenital heart disease cardiologist from Stanford. She received the results from my...