Well, clearly it’s been sometime since I’ve updated on our website. That’s not to say it’s been an uneventful year, more so busy than anything! It’s been a year of ups and downs, but fortunately today we were given a sigh of relief.
Lillian has been doing fantastic this year. We’ve moved into a new county where she will start at a brand new school as a kindergartener in one of 7 classes! It’s a huge school however she will be getting state awarded education and there will be a registered nurse at school at all times! This is our WHY behind moving. It’s scary for a mom when schools tell them they would refuse to give their daughter medication, to come up 3x a day to give it myself. Knowing a highly educated nurse will be there daily, building a relationship with her multiple times a day is refreshing and reassuring.
At the beginning of the year, I lost my best friend to cancer. It was a knife like I never expected, and she was a HUGE advocate for Lillian. She was there at the drop of the dime the second I needed her. 2 days after her funeral, the first week of February, I had hip surgery. Since then I’ve also struggled with bulging discs in my low back. It’s been a whirlwind, and the move was a huge positive point for us.
To say the year has been busy is an understatement! Through all of this though, my surgery, my friends passing, my back, the move, a new puppy(!), Lillian has stayed her spunky, resilient self! She graduated preschool like a champ, finished summer swim lessons and starts dance again in 3 weeks! I can’t believe my baby is registered for Kindergarten.
We saw Lillian’s kidney team for the first time this summer today. Due to a big surprise coming up that we will annouce in a few weeks, we felt like we were once again holding our breaths. Hearing the pride in Lillian’s doctors voice is so refreshing. They truly do love each other. Lillian’s creatinine and bun has gone up ever so lightly, HOWEVER, he thinks it’s more due to funky labs from her being sick and on antibiotics. She’s tiny, but growing on track and all other levels looks great. We meet with the transplant team at the end of the month just as a follow up. He emphasized today to ensure them that there is no rush for living donor transplant because she’s remaining stable.
Yes! Thank you God, huge sigh of relief! I am so grateful for our local team.
I am also excited to announce the 3rd Annual Hope for Lillian Grace Reindeer Run is set to take place December 1! Last years growth was astounding, let’s make this years even greater! More details to come!
I will be posting our exciting news on a surprise for Lil next week! Sorry it’s been so long since I’ve posted, like I said, things have been a little crazy this year! As always, thank you for the unending love and support for our little family.
#hopeforlilliangrace