We have continued to have lots of fun this summer, and feel blessed beyond belief to be doing what we’ve been doing! The only setbacks that we’ve really been facing is the fact that insurance still isn’t approving/covering an IVIG infusion to help boost her antibodies, and that Liviah has started taking another new medication, but she’ll only have to be on it for 2 weeks.
Now that that’s out of the way, let’s talk about, and show, all of the things that we’ve been up to!
FIRST! Two super huge things are:
1. That Liviah met all of her PT goals! (I forgot to take a picture of her with Miss Becca, who worked so hard with her, oye!) Liviah went from struggling to stand up from sitting on the floor, to being able to jog around our cul-de-sac without stopping- she is ABSOLUTELY amazing!!!!
and
2. We finally got around to totaling up the donations of her earrings for this summer (thus far), and she is donating $105 to the Liver Transplant Helping Hands Fun at Cincinnati Children’s Hosptial Medical Center!
(Don’t worry, there was no crazy child labor put into earring making- we actually had some generous donations come in for CCHMC through her earrings.) This puts her total donation to the Liver Helping Hands Fund at $210! We are so proud of our Sweet V!
Throughout this whole process, we’ve been told to let Liviah live life after her transplant, and although we want to keep her in a bubble, we’re doing our absolute best to get out and have some fun!
4th of July weekend- swimming, fireworks, and a parade
Playdates with new (to the kids) friends
Swimming pool fun with friends
Gifts from cousins, filled up water charts, and outstanding dentist visits
Checking off some items from our Summer Fun list with a night visit to our local amusement park
As you can see, we’ve been keeping busy- and yes, we (the parents) are absolutely exhausted!
Last, but certainly not least, I can’t end this post without saying that it’s Liviah’s aunt Kelly’s birthday (Liz’s sister).
This is so important because Aunt Kelly played a HUGE role, that she didn’t know that she’d be playing, and was there for a very special time, while Liviah was sick over the Christmas holiday. Like you’ve read (if you’ve been keeping up with our blog), Liviah getting sick was all VERY unexpected. Kelly lives out of town, and was coming in with her family for all of our holiday celebrations. Obviously, those celebrations didn’t happen like we had planned, but it’s safe to say that at the end of the day/holiday season, we were celebrating the life of Liviah that was saved by her donor, doctors, and God.
Liviah has 2 siblings, a 6 (now almost 7) year old brother and 1.5 (now almost 2) year old sister. Jack and I stayed in the hospital with Liviah, so our other kiddos really only saw us via FaceTime. Jack’s mom, Mary watched over and cared for Juliana, and my mom watched over and cared for Jaxson (and was 1 of our 2 visitors). Fortunately, Kelly was in town to step in and be there for Jaxson when my mom wasn’t there, and/or to help out. I’m sure he knew that something was wrong, but Kelly and her boys kept him entertained to the point of him talking about it constantly, and he can’t wait for his next sleepover with cousins!
Not only that, but right before Liviah was put on MARS (basically liver dialysis) to bridge her to transplant day, family was allowed to come in and see her before she got all “hooked/tubed up” and potentially would’ve been asleep/sedated/unresponsive until her sugery day [we were fortunate that didn’t happen either, praise the Lord!]… anywho, Aunt Kelly and Jaxson were the first ones to come into the room (2 visitors at a time due to Covid restrictions), and Kelly was helping me get Liviah cleaned up and back into bed when my phone started ringing. I recognized the number as one of the hospital numbers, so answered it on speaker. As I was doing this, Kelly was hugging and praying over our sweet, sweet Liviah, who was not really there mentally, repeating herself, and very jaundice, frail, and weak. As I answered that call our prayers and the prayer that Kelly was praying over Liviah was answered. They had a match for Liviah! The emotion, both happy (for Liviah) and sad (for the donor and his/her family) that swept over Liviah’s room was shared with myself, Jack, Kelly, the amazing nurse who was there, Jaxson, and Liviah (although Jaxson didn’t really understand, and Liviah definitely wasn’t aware.) For my sister to be there during that moment, was a truly an act of God. The stories we have of so many Godsend moments are incredibly goosebump worthy. It was the season of the birth of Christ, and we were blessed by God with the gift of life. God’s plans are clearly bigger than anything we could imagine for ourselves, and He loves us… oh, how He loves us!!
It goes without saying that we love our Aunt Kelly so incredibly much and hope that she has had the best birthday ever- we can’t wait for her to come into town and give Liviah a giant Aunt Kelly hug!
Jaxson and Liviah on the day we got the call & a huge HAPPY BIRTHDAY to Kelly!
If you’re still reading, thanks for “listening”. I realize this post is a bit lengthy, as we continue to process, and at times, relive everything. Liviah’s gift of life is something we can’t be thankful enough for. We are blessed beyond words, and pray that she continues to stay healthy. We pray that all of our children, family members, and friends stay healthy, happy, and thriving in their lives. Amen!