Our Story
Over the summer of 2018, Lavender started having some distressing symptoms. We saw her pediatrician, who referred us to a number of specialists. After 3 months of testing and visits with at least 7 different specialists (everything from ENT to Hematology), she was referred to Stanford, where she was diagnosed with a cluster of autoimmune diseases: Autoimmune Hepatitis, Inflammatory Bowel Disease - Unspecified, and Erythema elevatum diutinum (EED). That was October 2018. At...
Continue Reading »Updates
Update
Posted
Things with Lav have been stable this month. Not any worse lately, but not any better. it's been eerie for us, because she hasn't had any appointments all month, and... Continue Reading »
Procedure day
Posted
Today Lavender had her monthly endoscopy with banding procedure. It went well, and she is home resting and sleeping now. Dr. Gregory banded 2 small varices. He said... Continue Reading »
Officially Listed!
Posted
As of last Friday, 1/8/2021, Lavender is now officially on the UNOS transplant list. Her spot on the list is low, as her MELD score is only 13... Continue Reading »