Last week, Bexley’s wish to go to Disney was granted through the Make-A-Wish foundation. It was a lot of fun, and Make A Wish made it so special for Bex and our family. The part we loved the most was making unforgettable memories away from doctor’s appointments and hospitals. There were still medications, site changes, blood sugar checks, vital checks, etc, but the main focus was to have fun, and we did just that! We hit 6 parks in 5 days! Bexley’s favorite part was meeting characters and shopping, and Selah’s favorite part was riding roller coasters! I was worried about crowds and germs, so we chose safe options for Bex and I came armed with all the things to keep us safe!

When we returned, it was back to life as usual. Selah had an MRI on her leg monday which thankfully looked much better than we had all anticipated especially given her scooter broke at Disney the 2nd day we were there so she walked in her boot more than we had hoped.
Tuesday, Bexley had her transplant clinic visit at Duke (more driving yay🤪). Her liver enzymes continue to be elevated, so the doctor discussed her possibly needing another drain. Not the news we were hoping for. Before we proceed with that, they want her to try an antibiotic that stays in the gut. We have tried to get this approved before, but our insurance continues to deny it, so they have had to switch her to a more systemic antibiotic, which we are trying to avoid. She really needs this medication. Please pray with us it gets approved this time. She will also need another special MRI that will look at her bile ducts. We just want to get to the bottom of this and get it fixed. We are 21 months post transplant, and the most important thing is to protect Bexley and that precious liver… the most selfless gift she has ever received. 🌻💛🌻

Thank you all for your prayers and following along this transplant journey with us. We appreciate each of you!