The letter written to UNOS to ask for exception points to move Anni more quickly up the list was sent off last Friday. We will probably hear about their decision this week sometime, although they can take up to two weeks.
Meanwhile, Annika's PELD continues to climb. Her latest labs have her up to 16 (up from 11 just 6 days ago). If her liver keeps giving us these lousy numbers at this rate, she'll hit a PELD of 35 in 3 weeks or so. I read somewhere that a better predictor of mortality than PELD score at time of transplant was how quickly the score changed leading up to transplant.
It's depressing how easy it is to find depressing statistical analysis on the internet.
I'll try to post a movie of the girls later on tonight, plus a list of what Annika believes every girl should have when she's packing for a third transplant.
Thanks for the update, Moreena. We're thinking of you and Annika constantly.
Posted by: Deb | September 29, 2008 at 11:40 AM
Ditto what Deb said.
Posted by: HennHouse (Karin) | September 29, 2008 at 12:16 PM
Thinking of you and annika and frankie and jorg. And, remembering to check that I've ticked the right boxes on my donor card.
Posted by: bj | September 29, 2008 at 01:26 PM
Thanks for keeping us updated. I nearly jump out of my skin whenever I see you pop up in my reader.
I cannot wait to hear Anni's hospital list!
Posted by: Kyla | September 29, 2008 at 01:28 PM
Thinking of you all. God Bless!
Posted by: Mary O. | September 29, 2008 at 01:30 PM
I bet Anni has one rockin' packing list. And I hope that the UNOS people respond quickly--and affirmatively--faster than your girls can charm the pants of anyone who's paying half attention.
Posted by: Susan | September 29, 2008 at 04:34 PM
Oh my...I'm confident that Annika's packing list will be well worth reading, though it may be rather more challenging to actually pack it.
You know, don't you, that we're all praying and thinking of you and longing to do something that will make an instant and material difference.
Posted by: Kathryn | September 29, 2008 at 05:02 PM
Everything I could say has already been said... and more eloquently than I would have done it. I'm thinking of all of you!
Posted by: Sonja | September 29, 2008 at 05:08 PM
My family used to have a deal: no googling of statistics. Of course, we nevertheless still did, and they were always depressing or downright frightning.
Still, so far the things they seemed to threaten did not come true for us. And this is what I wish for and for some reason believe in with Annika, too.
All my best wishes for enough exception points to get Annika her new perfect liver before her state of health can worsen much more. At the moment, she is on my mind and in my thoughts every day.
Love,
Hannah
Posted by: Hannah | September 29, 2008 at 06:05 PM
Prayers, prayers, and prayers.
And waiting breathlessly to hear Annika's list. I'm sure it will be a doozy, lol. She's one of my favorite kids ever.
Posted by: Jozet at Halushki | September 29, 2008 at 08:17 PM
You're in our thoughts, as always, Moreena. Looking forward to Annika's list. . .
xo
Posted by: Catherine | September 29, 2008 at 08:22 PM
All hope and good thoughts for you all. Can't wait to hear the list!
Posted by: bec | September 29, 2008 at 09:19 PM
Thinking of you all, and praying ...
Posted by: Rev Dr Mom | September 29, 2008 at 09:30 PM
Lots of hugs and thoughts for you and your family!
Posted by: jeanie | September 29, 2008 at 10:29 PM
You are on my mind constantly. Hugs for you and Annika and Frankie and Jorg.
Posted by: liz | September 30, 2008 at 01:35 PM