I’ve dropped the ball on updates. It’s been quite a month with lots of changes and adjustments for the family. Jarrod is officially retired from the Army, and I unexpectedly lost my job in November while we were in Orlando for appointments. However, Freya is doing great.
This month, we were able to participate in a Miliatry appreciation weekend at the Westgate Resorts and took one last complementary trip of the year to Sea World. It was a much needed time for (half) the family to unwind, and Freya was awake and so interactive during the entire day at the park. She watched every scheduled Orca show, spent a lot of time face to face with a walrus named Cora, and definitely enjoyed exploring Sesame Street Land. The musical Christmas lights and displays had her dazzled, and we stayed until the park closed. We also were able to pick up a bubble wand that has made medical appointments a lot easier.

In November, she had an ultrasound to assess how her portal hypertension is doing, whether or not fluid is accumulating in her belly again, and how much her liver and pancreas have changed. It was very long, and poor Dad and Freya were both frazzled by the time it was finished. After reviewing the images, her doctors were all very pleased with the results; what a relief! Between the new images and labwork, her liver function was looking very stable, so we tried adjusting some things in her supplements and diet and her mystery symptoms seemed to resolve themselves. Hurray!

“Dad, let’s go home now.”

The rest of November was filled with quarterly appointments: hematology, her local GI, and the pediatrician. We also threw in one quick trip to the ER to swap out her feeding tube, where we were pleasantly surprised to see Dr Carlson; one of the ER docs at Wolfson who has been overseeing Freya’s care during most of her hospital admissions since the beginning of this whole journey. Loved seeing her, but also hope not to see each other again for a long while.
Nemours GI

big smiles after throwing up all over mom at the pediatrician’s office

new tubeDr Carlson at the ER

Yesterday, we were back in Orlando for monthly labs and a transplant clinic visit. This trip, we were able to snag a room at the Ronald McDonald House right next to the hospital and clinic. This made early morning appointments so much easier. It was a hard blood draw this time, and it took four tries. She’s such a tough girl, but I wish she didn’t have to be.

warrior princess

Again, her labs were beautifully stable; some even having improved still. Her team was very happy with how she looked and her growth. She’s 70% for length and 65% for weight. Thank you, Jesus; she’s come a long way from where she was less than a year ago.

Dr Kohut, Dr Chotani, her dietician Nicole, and Karen, our transplant coordinator RN

Freya is very mobile, but still not officially walking yet. We are close though, as she is taking a step or two unassisted on the bed or when she’s very near something she can grab onto. One of her favorite games is peeling painters tape off her body. Some of her favorite words right now are “book,” “ball,” “bird” and “Yaya” (Freya). We are also very into clucking like a chicken and meowing like a cat. Until next time…