Since we’ve last posted, lots of things have happened!
To start off, pieces of Liviah’s story have been shared in a few articles. One from the Washington Post and one from Today.
Washington Post Article about Liviah
We are really hoping that this brings awareness to the tell tale signs of liver issues, the importance of signing up to be an organ donor (it saved her life!), and Liviah’s Journey, one which she will be on for the rest of her long, long, thriving, impactful life.
She had her swimming “milestone” (mentioned in our last post), and has hit a few more milestones since, which have quite honestly been things that we’d never have thought of to be milestones before her Acute Liver Failure and liver transplant.
We recently took Liviah and her older brother to an amusement park, where they rode roller coasters, YES, roller coasters! Riding roller coasters was something that we did all the time pre- everything that happened, and we were unsure of if she’d be able to do after having a transplant. Her liver team okay’ed it as soon as we asked, and we took full advantage! One thing’s for certain, girlfriend still loves the thrill of the rides- quite a bit more than her brother, haha!
Liviah and Jaxson had their last day of school for the school year! We were unsure if Liviah was going to make it in for her last day (more on that below), and she was happy to see her friends, but so, so sad to not get to see them each week. Playdates with friends and summer outings are in our near future.
The reason we were unsure if Liviah was going to be making it to her last day of school was because she kept having random episodes of throwing up starting on Monday. Initially we thought it was because she took too many of her medicines, or took them on an empty stomach, or something of that sort, but then it happened again in the early evening. It was quite random, and seeing as this is how everything started for her, we made a call to the liver team. We went over the situation, temperature, blood pressure, heart rate, etc. and they decided it was best to bring her to the ED to ensure that nothing more was going on with her. While there, she got a blood draw and IV, and also had an ultrasound where they checked her liver and her kidneys. 
Between 1 and 2 in the morning, we got results of everything. Fortunately everything checked out okay, and she hadn’t thrown anything up since being there. We were free to go as long as she could keep down some liquids and solids. After giving her some food and drink, and her keeping it down, we got discharged and made our way home. We finally got her in bed around 3:30 and were thankful to be home, but have been keeping an even closer eye on her than we already had been.
Tuesday, she stayed home to rest and was feeling so well that she played in her soccer game that evening. Wednesday she made it to school, and on Thursday morning, right after taking some of her medications, she threw up š Jack talked to the liver team, and we’re still thinking that it’s her medications that are somehow upsetting her stomach and making her sick. She weaned off her steroids this week and dropped another medication, but is still taking 11 pills a day and 2-3 suspensions a day (depending on the day). Anywho, after Jack stayed with Liviah for a bit at home, talked to the liver team and Liviah’s teacher, everyone was on the same page, and felt like it was truly just her medicines, so she got the green light to attend her last day of school and class party. Luckily, Jack was already signed up to volunteer, so he was able to bring her into the classroom and take her home after her party!
Friday marked mine and the kids’ first day of Summer Break!! It started off with an early morning blood draw for Liviah (due to her throwing up the day before, and an accurate tacro level needing to be checked before the long holiday weekend). She did SO AMAZING! She didn’t shed a tear, and actually said to the phlebotomist, “How did you poke me so quick?!” Her results came back shortly thereafter, and her liver and kidney numbers were ALL IN RANGE- which is the first time in a long time, if maybe ever, that all of them were in range!!! Yay!
We continue to be so thankful, and feel so incredibly blessed to be writing about such positive things within her journey. We continue to pray that everything will keep going in a positive direction, that everyone will stay healthy and happy and have a fun, safe, memorable summer break!
Coming up, we have an interview with a local news station, and the New York Times is sending out a photographer for a possible article.
We are also planing some fundraising events, so be on the lookout for that information!
Lastly, thank you for all of the continued love and support! Please consider donating to COTA in honor of Liviah and her lifelong journey!
Love,
Liz & Jack