Tomorrow we should get the package for the next round of blood tests for Fiona. After we get the results of these tests, if they are normal, we are discussing sequencing her entire genome. In order to do that they have to sequence my genes and Christian's genes. Genome sequencing costs about $15,000, and about 40% of insurance companies will pay for it. I was surprised to learn that even if we test all of her genes there are some genetic problems that won't show up.
I learned something funny today. There is a rating scale called the Karnofsky/Lansky scale. 100% means that you are totally healthy. 0% means that you are dead (do they actually rate you when you are dead?). I'm not sure why I thought it was so funny. Fiona is 100%!
Today I'm feeling a little discouraged that we haven't made any progress in diagnosis, but hopeful that we are starting some new testing. Waiting is hard.