Right now, Freya is considered pretty stable. She is on a lot of meds to keep her there, but we are enjoying this period of rest from hospitalization. Her labs have been slowly returning to what was normal for her before her last hospital stay, and it seems that her ascites (fluid in her belly) is being controlled well by her diuretic. Our biggest and most consistent challenge lately has been keeping her NG tube placed. Between Freya pulling them out and tape or tube failure, the poor girl has her tube replaced about every week if not more often. Not fun for anyone involved. On Wednesday, we have her monthly appointment in Orlando at the transplant clinic and should have more updates to share.

For now, we are just trying to give her as many fun experiences as we can before transplant and while she is not dealing with too many complications. We have heard that the first year post transplant is so unpredictable, and she will definitely be avoiding crowds for a while once immunosuppressed. Recently, she was able to experience a day at DisneyWorld thanks to her Auntie Christiana and her husband Doug, whose band Hoobastank shared their Park Hopper tickets (thanks so much, guys)! This past weekend she went on her first camping trip at the beach at Hanna State Park. This girl loves her outside time. Next up, this coming weekend, she will get to see her favorite artist at the Sing Out Loud Festival in Saint Augustine- Sierra Ferrell! She has been her absolute favorite since she was a newborn.