Zoie Rae getting older 💜

It’s been 3 years since I wrote a blog. So long in fact that I had to download the Blogger App on my phone because blogging has changed and I couldn’t figure out how to create a new entry. I asked Ivie what she thought I should name this blog post after telling her what I was going to write about, and she came up with, “Zoie Rae Getting Older.” It’s pretty fun to have girls old enough to share my blog with! So, here’s my shot at sharing what it’s like to have a 10-year-old amazing needs kiddo, and some things that the world doesn’t prep you for as they get older, some life updates, and prayer requests too. 

Alright, let’s be honest and start by saying we never thought Zoie would live to see 10, so praise God for this, and going an amazing whole year without a seizure! Miracles are all around us and I love witnessing them. As Zoie has gotten older and stayed so healthy we are navigating puberty and hormones with the help of an endocrinologist (a whole new team to our list of teams,) but they have been phenomenal along with the help of Zoie’s pediatrician. Let me just say, it’s really hard some days to have a hormonal sweet girl who is non-verbal. Some days Ibuprofin is our best friend! 

As Zoie has gotten taller, her spine is starting to curve more which is part of her Cerbral Palsy. Spinal surgery is always in the back of my head, but her CP and rehab team reassured us that they would only do this if we really needed to. It’s one of the biggest surgeries a kiddo can go through so we continue to pray that her water therapy, massage, horse therapy, PT, and us working on her sitting positions will all help her spine. Another reason why therapies are SO important! A few weeks ago I was actually really hard on myself after talking to therapists about her spine, but I had to remind myself that I am only one mom, of 3 precious little girls, and I am only in control of so much. 

Zoie got approved for a new CF drug (she is currently on a great one called Kalydeco that has done wonders for her coughs, mucus, and colds.) Her CF team wanted to switch her to the most recent one called Trikafta at her last appointment. It may help her CF more than her Kalydeco does, but it has a greater risk of affecting the liver. Zoie already has to get her Lipase levels checked every 3 months because of her seizure medications and CBD oil, so for now Derik and I aren’t making any changes, but instead keeping an open mind and praying about it. I hate making changes when something isn’t broken, but unfortunately you don’t know what the risks are until you change. 

Another thing we discussed with her CF team was yearly blood glucose testing. When a CF patient turns 10, it’s routine that they get checked for diabetes once a year. We will start this process on August 11th and add the blood center to our list of yearly teams for Zoie to see. Zoie will fast all night, get her seizure medications in the morning on an empty stomach, trek down to Childrens hospital, I’ll have 5 minutes to pump the glucose drink into her feeding tube and pray it doesn’t make her sick (throw up or have a seizure,) and then she will get an IV in her arm. If all of that goes according to plan, we will sit there for 3 hours while she gets a blood draw each hour. If she throws up, we come home and have to make a new appointment and start over. Her team says this can be rough on kids and my anxiety is already panicked for it, so please pray it’s okay day breezy and we can get it all done for the year before she starts 5th grade! 

Drum roll! 5th grade this year. Wowsers! Another thing people don’t warn you about as our amazing needs kiddos grow up! This will be Zoie’s last year at her phenomenal school. I get tears just thinking about it. This means that I will spend this Fall interviewing Middle Schools and their special needs programs to see where the best fit is for our Zoie girl. I did this 6 years ago but for some reason middle school scares me. I’m praying God leads our family to the right school with a loving staff and loving kids. 

If you’ve made it this far in reading this, Thank you! Thank you for loving our family, letting me jot down my feelings, stresses, and anxiety on paper because it helps me breath a bit easier, and thank you for praying for us all as we navigate some newness with our big 10-year-old. 

Thanks Ivie for the wonderful blog title 😘. 

“Be proud of who your child is!” - unanimous