NEGU

What is NEGU, you ask? NEGU is our new motto here in St. Louis. Last night Erin had a sleep study done at the hospital. Upon our arrival the technician gave us a goody bucket filled with donations from the Jessie Rees Foundation. The foundation was created in honor of 12 year old Jessie who suffered from 2 brain tumors in the course of 10 months, she would have been 17 in April. The buckets of goodies were her idea to help patients cope through the loneliness of cancer (and in our case CF) and to remind them to Never Ever Give Up. The timing of this gift was perfect as we needed a little extra encouragement this week. The transplant surgeon will not sign off on Erin being listed until they figure out the problem with her stomach. Something like an ulcer could cause major problems and possible rejection if they proceeded with the transplant, so obviously we want to avoid that. They started off with the least evasive test and will continue with each new test until they get the answer they are looking for. Erin is doing surprising well off of antibiotics and is working very hard with her physical therapy to ensure she is at her best when we finally do get listed. NEGU, a good motto for us all!

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