Day +232: Please pray for Lily Claire

She is fighting for her life: http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=lilyclaire

As for our little patient, we had some more interesting news from her clinic appointment Wednesday. Dr. Horn called yesterday to tell us that she has another c. diff. infection. C. diff. is a bacterial infection in her gut that she's had several times before after an extended time on antibiotics. She did just finish a course of amoxycillin that was given because of her continuing cold symptoms, so that may have been the trigger. It's also possible that she never quite got rid of it last time. She came home from the hospital with it, and one round of antibiotics didn't get rid of it. Her symptoms subsided after a second round, but perhaps she was just asymptomatic for a period. This is now the leading candidate for her continued gut issues, though Dr. Horn said a virus could be contributing as well. Normally c. diff. doesn't major problems, but it's a bit worrisome because there has been an antibiotic-resistant strain making the rounds at UCSF and other hospitals.

The other news we got was that the X-ray revealed a small nodule in her sinuses. Dr. Horn doesn't think it's worth treating as long as we feel she's improving, and both Mina's and Isaac's noses seemed to be drying up today, so we're hoping that will just take care of itself. Mina has been off the cyclosporin for three full days now and isn't showing any new skin rashes or other symptoms. I'm now beginning to wonder how long it will take until the hairs that it caused to grow all over her back and neck fall out. She's been eating very well too; she had gained a full kilo at her Wednesday appointment!

The Sound of Music was on ABC tonight, so Mina and I watched a bit of it after dinner. She loved the songs, but she didn't care much for ABC's pattern of putting commercials right after every song. When that happened after the first song, she started to cry because she wanted to hear another one. I had to talk quickly to convince her that another song would come on soon. It happened again a couple more times, but she eventually started to figure out the pattern. Still, after every song was over she would say "Sing another one?" Even when she was falling asleep in my arms, she opened her eyes after a song was over and whispered faintly "Sing another one?" She also kept up a hilarious running commentary on the show. It went something like this.

What's dis song?
Sing another one?
Raining dere!
Raining at dis house!
Raining at Sissy's house too.
Kids scared?
What's dis bed?
Dis a big one?
Horsie!
Sissy yike horsie.
Where eyes?
What are they riding in?
What's dis house?
Kids in boat!
Fall out of boat!
Wet!