I also downloaded and completed the Shriners Hospital for Children application, so we can start Bertrand on additional physical therapy. Hopefully, his pediatrician will endorse it some time this week so we can get him started as soon as possible.
Tonight, I'll be sending some emails to Drs. Samson-Fang and Longo. I think Dr. Book is a lost cause--the disregard her office showed me and Bertrand last Friday (and every step of the way through this process of diagnosis) is appalling. We're getting a new GI doctor. Grr...
And, Monday, I want to hit the ground running with the additional lab work, including the mass spectrometry and blood/fibroblast analysis. Our goal is a diagnosis by the end of the week. A liver biopsy shouldn't even be necessary.
In much more fun news, we are planning a trip to Chuck E Cheese's and a roadtrip to Colorado over spring break! Bertrand will stroll through Arches National Park, splash in the Glenwood hot springs, hobnob in Vail, and eat yummy food with 3 of his aunties (Mimi, Saby & Beli)!