What a whirlwind the last 3 weeks have been for our little warrior princess. Her first Easter egg hunt and her first sleepover with her big sister- she really enjoyed both! Here are some fun pictures from all the things she’s been up to.
Easter weekend was hot and busy!
First sleepover with big sissy in Jacksonville including a trip to an aquarium. Big girl!
On the transplant front, we are just hanging out and waiting patiently. She is still tube-free, and her palate is expanding every week. We’re prioritizing the basic things like outside time in the sun and utilizing red light therapy over her belly to help keep inflammation down. I look at this long, filled out child lying next to me and I marvel at how far she’s come. Praise God. One thing I’ve noticed is that taking her meds and supplements orally rather than straight through her tube is starting to affect her teeth. But she is taking them twice a day like a champ. Her next labs and clinic appointment with liver team is June 4. Assuming that all looks well, her next appointment would be with her local GI in July. Please continue praying for her stable health and a continued reprieve from the hospital and complications.
Taking good care of her babies.
Future soccer player
She’s come a long way…
Freya has finally joined the ranks of the siblings who have come before and become a real berry-loving toddler. It’s good to see her eating and enjoying all the liver-loving foods, and I hope she does so her entire life (although I’m prepared for that picky toddler stage to rear its head eventually). She’s also a real chatty-Cathy. She’s saying a lot of single words clearly, but she mostly speaks in prolific paragraphs in a language only she understands. What a sweet fun age. I’m soaking in every day with her. 🥹
Thank you to everyone praying for us, sharing Freya’s story with friends, family, colleagues and your churches, showing up for or sharing the fundraisers that her team works so hard to organize, reaching out to check up on us through text or message, and, of course, for donating. You have no idea how much all these things have blessed us and carried us through the valleys of this journey. Knowing that, no matter what challenging circumstances we find ourselves in financially, Freya’s transplant needs and expenses are always met and covered because of your generosity is an immense weight off our shoulders.
And to our amazing fundraising team, and especially Angela Neidig- y’all have served our family tirelessly in so many ways, big and small, and we cannot express our gratitude enough. We love you!
Until next time…