Hi friends! It’s been quite a while since our last update. The summer kicked off with a few bumps, but there has been plenty of fun sprinkled throughout, and it’s been a nice quiet July for our spunky girl who is about to turn 2 in less than a week! We cannot wrap our heads around how quickly we got here, but praise God!

The Aquabats hosted us with VIP backstage passes in June. Fun! Thanks Uncle Benjie and Bat Commander (Christian). And thanks for the cool picture Eagle Bones!

Appointments…

So much time spent eating in the highchair. It’s exhausting!

In June, Freya had a liver team appointment in Orlando. Her labs went well, but as you can see by these pictures, even the smoothest blood draws can be scary and traumatic. Her team was delighted with the lab results, but they weren’t loving the way she had slimmed down and her growth had slowed a bit since removing her NG tube. She’s still within healthy parameters though, so we will revisit the issue at her next appointment. Please pray that we can keep her weight up!

Bright and early for labs and liver team

Even the easiest pokes can be very upsetting still. “Let me go!”

All done! See you next time Liver Team!

After such a great transplant clinic appointment, Freya started losing her appetite and becoming very lethargic. There was no fever, but she would only sleep on the cold tile on her belly, her stools were very loose, and she seemed to be dumping weight quickly. All the trauma of that first hospital stay when she battled acidosis came flooding back, and we contacted the liver team. Because there was no fever, they didn’t suspect cholangitis (an infection and inflammation of her bile ducts), but they encouraged us to bring her into the ER if we remained concerned. After watching and waiting a few days with no improvement, we packed our bags, prepared the house and kids for a long hospital stay, and headed down to Advent Orlando’s ER because we wanted to avoid a possible hospital transfer via ambulance from Wolfson in Jacksonville. As far as ER visits go, this one was the easiest one yet. What a fantastic team they have working in the children’s ER department. Child life came in for her IV placement, and did such an amazing job distracting her. There were tears, but only on and off thanks to an ipad playing the Wiggles and Mickey Mouse. And the brand new Mickey stuffy they brought in for her while she got a bag of fluids was the icing on the cake. She was one happy camper. And then the unexpected news came; her labs looked even better than they had two weeks earlier, there were no signs of dehydration, and she could be discharged after her bag of fluids were complete. What a shock! Who knows what goes on with their little bodies, but our relief was immense. She went home feeling much better after the IV fluids and started eating again the next day. Bullet dodged; God is so good.

Poor girl could not stay awake and would only sleep alone on the tile.

Advent Children’s ER was amazing and had our girl feeling better in no time.

July has gone by with no new worries. Mom spends what feels like 75% of every day meal prepping, feeding, and scrounging up snacks for a bottomless pit of a toddler. This girl likes to eat every 90 minutes, and if you miss that window, she lets you know it. There was a time where every bite and swallow of solid foods was a huge victory. To think of how far she’s come now is very sweet. She’s still on the leaner side, but we are chalking that up to genetics (Dad’s, not Mom’s 😂). She’s been enjoying these hot days in the backyard on the splash pad, and has even had a sleepover away from Mom and Dad at her oldest sister’s apartment. Lots of firsts for her as she becomes more independent.

Going places and doing big girl things with big sissy Mia and future BIL “Tywer.”

Eat, eat, eat

Daily splash pad fun, soaking in all the vitamin D.

As we approach the end of her second year earthside, we are filled with gratitude for the way God has sustained us through our church, community, family, and friends and the way He continues to show His mercy to her by allowing her to enjoy a year punctuated by more highs than lows. It’s given us time as caregivers to really process everything that we all went through with her during her first year. What a ride it’s been. Thanks for hanging in there with us as we watch and wait for what’s to come…