Big Changes and Big Milestones

March hit our family fast and hard. Besides being a particularly challenging month for many reasons (like Jarrod getting rear ended at a stoplight and his car totaled), we also had all the sickness passed around for weeks; stomach, flu, pneumonia, unknown respiratory, you name it. Freya weathered it all really well. She really only had a touch of something once, and it was gone in less than 24 hrs. Praise God!

Celebrating St Paddy’s Day at home with corned beef and cabbage. She loved it!

Lots of outside time on the trampoline

Baby’s first trip to Ikea

Some very big news is that she’s tubie free for now! She saw her GI doc at the beginning of March who agreed that it was probably time to try life without the tube again. Her weight has been very stable, she’s eating solids and drinking well. The biggest concern was administering meds orally. When the time came for us to switch to a new tube, I iust decided now was the time to give it a shot. After 4 days of trying everything under the sun to hide some of the meds in drinks, food, etc, I just started giving her the meds straight from the syringe, and although we have to go very slow and be more patient on some days, she’s taking them! This was a huge win because in the past, even if we got them down her throat, she made sure they were coming right back up.

Relearning how to use a straw with her honey bear cup.

Since ditching the tube, Freya has been catching up on a lot of delayed milestones very quickly. She began walking almost immediately, and now we are all run ragged trying to keep up with her. It’s a season of mystery bumps and bruises, but I’m so happy to see her finally walk and run.

Walking to Griffin on the trampoline

Harrassing.. I mean loving on her kitty

Walking with Sissy like a big girl

At her most recent appointment with the liver team in Orlando, her labs all looked fantastic. She’s remained very stable for quite some time now, and her growth is still steady. As long as things remain this way, her team is comfortable with seeing her in person every two months, including labs! We still check in with the team through our nurse coordinator weekly over the phone. With so many sick babies waiting for organs and so few to go around, it’s a great blessing and mercy to her that she is stable and avoiding a lot of the terrible complications of liver disease while she waits for her perfect match.

Early morning at Advent in Orlando for labs before clinic

Finished with labs and getting vitals taken at liver clinic

So far, April has been spent enjoying good weather, chasing chickens, picking mulberries, riding around in the Joob-mobile, attending a couple hockey games (she’s a big fan), and shopping with Dad for her first pair of walking shoes. Every day, there’s a new clear word added to her vocabulary, she is singing her favorite songs, and just generally trying to keep up with all her siblings. What a sweet thing it is to see her thrive. God continues to be so good to our girl through everything. Until next time…