Alright, alright, alright. It’s been over a year since we shared an update to our COTA community. Thank you for sticking with us (and hopefully you have been following along on Facebook, where we post more regularly). In honor of Jonah’s upcoming 2-year diagnosis day and Kasai procedure, we’ll be sharing two posts to recap the last 13 months. Let’s get to it!

Quick recap of where we left off — in February 2022, Jonah was diagnosed with an egg white allergy following an anaphylactic reaction to a delicious, freshly baked pop tart 😶 All was well in the liver lab department as we were approaching the anniversary of his original diagnosis day, March 19, 2021.

So March (2022), Jonah started to experience life outside the quarantine bubble with college lacrosse games, local parades, surprise parties, and travel! In the midst, Jonah was eating more food, learning to walk and talk. He continued to have monthly labs that looked good (minus up and down EBV levels), and his transplant team worked to finesse his medications and doses. Very fun stuff — if reading isn’t your thing, check out a photo recap of the last year 📸 https://cota.org/campaigns/COTAforJonahsBAJourney/photos/Its-Been-A-Year-February-2022March-2023-v02.

Remember that little bit about travel — well, June rolls around and we stuffed our car, and drove to the beach in North Carolina for a week away with extended family. The day after we arrived, Jonah’s transplant team called saying they reviewed his latest lab results and believed he may be experiencing kidney-damaging dehydration and early-rejection 😮‍💨 Great way to kick off a relaxing week! Things like “go to the local ED for IV fluids” and “get another set of labs done immediately” were discussed, but this is also when striking a balance of caution and passionate advocating kicked in. Jonah’s EBV levels were elevated, which typically triggered some dramatic lab changes and never required this level of reaction… long story short here, we bought ourselves time, focused on hydrating all week, and enjoyed vacation.

First day back from vacation, Jonah had a lab draw at UMD Pediatric Infusion Center — this team is the BEST and whiel Jonah hates a poke, loves getting bandaids and tissues from his favorite friends. Day after the lab draw, Jonah and Daddy reported for a one-night stay at Georgetown Transplant Center for a liver biopsy and testing that would have been done later that summer for his 1-year post-transplant evaluation. Praise God, Jonah was negative for acute rejection, negative for hepatitis and cholestasis, and there was no increase in portal fibrosis (stage 0).

Summer was fun and full of extra sunblock (immunosuppressant life), but also featured a ton of new doctor introductions and visits to check all the boxes for that 1-year post-transplant evaluation. You see, his transplant team wanted to make sure that his August 19, 2021, surgery did not impact any other little body functions — eye doctor, dentist, PT/OT graduation, etc. Everything checked out just fine — most of his new doctors were astonished at Jonah’s journey and his happy temperament. The transplant team wasn’t unhappy with his health, but they did start to see lab results indicating his kidneys were working a little harder than they should. This is a relatively common, negative side effect of his life-saving, anti-rejection immunosuppressant. Rather than decrease medications by the first anniversary of his transplant, we traded and increased the number of medications 😑 Jonah hasn’t minded too much, and he certainly loved his first liverversary party because there was an ice cream cake 💚

Fun fact, many adults who require a liver transplant will have their liver and a kidney transplanted at the same time due to the stress a failing liver puts the kidneys through.

By the end of the summer, we figured after all the firsts Jonah had experienced, it was time to get him his first haircut. Have no fear, the curls and little white patch are still there! Big brother headed back to pre-k a few mornings a week and Daddy added full-time Paramedic school to his work schedule. Boy did Jonah miss his people, but it gave him and Mommy some special time together that they didn’t have through his infancy.

Autumn 2022 looked like a relatively normal life of an 18-month-old and family. We enjoyed all the Northeast traditions like baking with apples, visiting a pumpkin patch, and contracting colds from little nosepickers. We also participated in the Baltimore Donate Life Walk and entered a very busy holiday and birthday season 🎂

If you’ve made it this far, thanks again for your support. Reflecting and sharing this journey is not only cathartic, but something we feel is part of our purpose. There are probably details missing, ups and downs, so come back later today to finish catching up on the start of 2023!