It’s been another crazy few weeks. Hurricane Milton came through Florida last week. We weren’t really sure how bad it would be, but we decided to stay home and prepare as best as we could. Outside of losing more banana trees, our family and property came through unharmed. What a great mercy! Thanks again to all friends and family who were praying for us and our beautiful state.

Earlier in the week, Freya had an appointment at Wolfson’s Day Stay hospital to get her new NG tube placed and have monthly labs drawn. Her team and UNOS (the national organ transplant system) use her labs, height, and weight to calculate her PELD (pediatric end-stage liver disease) score. This score is calculated for transplant waitlist patients 12 years and under, and it helps them determine priority for organs based on how sick or stable a child is at the time. The nurses at the Day Stay hospital are always so great- actually, all the nurses at Wolfson are. It’s a blessing to have such fantastic children’s hospitals within easy driving distance. Here are some pictures of the tiny old pro getting through some unpleasant business.

Now that we are back in business with a new tubie and the cutest decorative NG tube tape from Sweet Cheeks, the medication schedule has commenced as have the pump feeds. Hooking a busy toddler up to a feed pump for an hour is no walk in the park! But we make it work. Below are some pictures of some of her daily meds.

I do want to mention this week how unbelievably grateful we are for our community. Our church, Providence Bible Church, has been and continues to be incredibly generous and gracious to our family as we walk through this trial. We thank God for your fellowship and ministry. And to our Amenities soccer family whose moms run the COTA for Team Freya campaign, organize meal trains, drive our children to work, practice and events… you all have served and loved on our family at the drop of a hat in so many ways. We could never express the depths of our gratitude for you, our precious friends who have become family.

I know COTA for Team Freya has their first fundraising event planned for the beginning of November. I’m sure they will share more info on that soon. Freya would love to see you all there to blow kisses and give high fives!

Until next time… Go Team Freya!