It's rough for everyone. I'll be so glad when it is just a (large) scar.
I still don't know when surgery will be. I know it's a pretty major surgery and she'll be in the hospital somewhat indefinitely; 3-infinite days depending on pain management and the requirements of the doctors based on the body parts that are removed. Like I've said I can't be specific because well, the best illustration is this. My little niece is 15 days old. Worldwide 600 babies with any variation of this have been born, statistically speaking. And while that sounds like a number that's not that tiny, 5, 550,000 babies have been born in that time. See the rarity now? It's terrifying because there is not a specialist on this condition. Her surgeon may have never seen it before. She'll have tons of med students watching I"m sure.
I try to read reader's blogs. I haven't updated my links list in a few years so that will be a project soon, but it came to my attention that at least one of you has been blogging and I thought she had stopped.So, if you have a blog and you'd like a reader, please post a comment on this post. I'll be happy to read what you have to say. I'll warn you that I am sometimes a bad commenter; it depends on how I feel. For the next several weeks I will be needing things to read but may not feel coherent enough to comment, and my older niece may make it hard when she is here; she likes to have our full attention and probably will be extra needy while her sister has surgery.