Kaylee Babb

May 25, 2026

I wanted to tell everyone a bit more about Kaylee so you can see what an amazing happy blessing she is to our whole family. I also want to talk about what all Kaylee has been through and everything she has overcome!

While Kaylee was still in the hospital I was told there wasn’t going to be much progress with her, that we should just move to KC because she will be in the hospital more than home but I refused to believe it. Kaylee has proven that she can keep progressing, even doing what the Doctors didn’t think was possible, as we watch God’s hand in all of it. Kaylee definitely communicates with us even though Kaylee is nonverbal. After months of praying Kaylee finally said Momma soon after she turned 1. It was such an amazing testament to God’s power.

Kaylee is partially deaf and wears bilateral hearing aids so we started working with the School of the Deaf with Infant and Toddler Services. Kaylee now uses 3 signs in ASL on a daily basis but also knows how to sign 7+ signs. Kaylee comprehends over 20 ASL signs and is working to learn more while in school through ASL exposure with her Interpreter and her Teacher of the Deaf. Kaylee has also started shaking her head up and down to express “Yes” and sounding “uh huh” and “uh uh” which is communication that was part of the “impossibility list” some doctors gave me when she was just a few months old.Kaylee has made amazing progress in her physical abilities. She has been in PT & OT once a week since she came home from the hospital. The OT said she was the tightest person she had ever met and trunk rotation was impossible at that point. Kaylee couldn’t sit, stand, take assisted steps, get on all fours, roll from back to belly or belly to back, cross midline, couldn’t hold anything for more than a second, couldn’t even hold her head up the best at 6 months old. Kaylee is now able to do all of that (some with assistance and some on her own) and more. She may not be able to fully do everything right now but she works hard every day making slow and steady progress that is nothing short of miracles! Kaylee’s genetic condition caused a lot of midline deformities including a difficult airway that was a grade 4 needing specialist for intubation. They had to call a code blue many times while she was in the hospital that required bagging and CPR. They said she would need a tracheostomy but by God’s grace and mercy we were sent a doctor who had amazing faith and took on Kaylee’s case stopping us from having to go down that road. A week before Kaylee was born the ultrasound showed she had hydronephrosis of the kidneys, later testing confirmed severe reflux. They believe Kaylee has a neurogenic bladder which worsened the reflux. She had a cleft palate that went from the back of her upper teeth all the way through the hard and soft palate splitting even her uvula in two. Kaylee also had missing brain matter that they believed would affect multiple areas of functioning but we have seen growth in that too! She has constipation that requires a daily enema and laxative. She is partially deaf in both ears and partially blind in her right eye so she has ear tubes, wears hearing aids, and does patching daily. Kaylee has low muscle tone which requires AFO’s and Billy shoes and makes the physical development harder. She also had really bad cortical thumb and has hand splints that have helped bring her thumb back out so she can grabs toys.

Kaylee has obstructive and central sleep apnea requiring a vital monitor and oxygen. She has GERD with requires suctioning and manual cough assist and is worse when she gets sick, tired, or laughs too much.Kaylee has had to have a lot of surgeries to help her develop and make the progress she has made. Kaylee had 3 Supraglottoplasties with at least 2 nasal turbinate surgeries which turned her grade 4 airway into a grade 2 airway (so close to what would be considered normal!). Kaylee had a G-Tube placement that was switched to a G-J and then back to a g-tube due to the cleft palate, difficult airway, and the bradycardia and desaturation events she had for months after birth. We were told she would probably never orally eat but Kaylee eats a blended specialty diet orally 4 times a day and uses the G-Tube for water flushes/medication mostly. Because of Kaylee’s severe UTI’s and reflux from the bladder to the kidneys she had a vesicostomy surgery that then lead to a pyeloplasty surgery with a second surgery for the stent removal. She ended up having 2 cleft palate repairs which was definitely a fight to get done. I was told by some of the doctors that since she had a g-tube then there was no reason to fix the cleft because they didn’t believe she would speak or orally eat. She sure proved them wrong but even after the first surgery failed I was told again that those doctors didn’t see a reason to fix it. Thankfully her genetics doctors who have supported our push for Kaylee this whole time gave us a referral to the best cleft palate doctor ever. He not only fixed the cleft but his whole team supports Kaylee’s push to grow and have the opportunities everyone else has!

New Years this year we spent at the hospital while Kaylee had a spinal tethering removal surgery. The hardest part of this surgery was her being unable to sit up for a couple days but she still got plenty of snuggles to help get through it and got to pet one of the cutest dogs at the hospital.

Kaylee has had several other procedures done under anesthesia some as simple as PICC lines while others are done to see what the next surgical option could be to help her live longer and happier.Kaylee’s first year+ home was filled with hospitalization, emergency flights, surgeries, appointments, therapies, equipment, and sometimes 4 times a week trips to KC but as she has gotten older and had amazing nurses come in to help with all of her care needs she has been able to be home and involved in everything our family does. We have had 2 amazing Nurses for almost 2 years now (Ms. Brandee her full time nurse and Mr. Jason her part time nurse). This has allowed Kaylee to experience escape rooms, movie theaters, public pools, museums, zoos, baseball games, soccer games, Wednesday night youth group, and so much more. My older 3 absolutely love their sister getting to be a part of all our activities and they make sure she experiences everything with them! Kaylee has the best smile and her laugh would put a smile on the Grinches face!

Kaylee has taught us to slow down and truly celebrate what would be considered small victories but are huge miracles that we get to be a part of. She is my faith building baby and I feel so blessed to get to be her mom! The silly side eyes and eye rolls. The head tilt with a mischievous grin. The humming and clapping at the Pastors as if to say Amen or Preach! The bright eyes that say pick me up and let me play with your hair. The laughing so hard that we both can’t breathe. The first real hug and kiss she gave when she was over 2 years old but now gladly gives the best squeezes. The gentle hold on my arm while she sleeps soundly next to me making sure momma is close by. The transition into a big girl medical bed that I was less ready for than she was lol. She changed my life in the best way possible and added so much joy. Even with all that she has been through she is still the happiest person you will ever meet!

As a single mom I; really need this van to help get Kaylee to all of her appointments and have room for her nurse to be able to fit in the vehicle with us and care for her on these trips to keep Kaylee safe. We need this van to be able to continue to make amazing memories where Kaylee is able to participate along with all of my children. We need this van because inclusion matters, experiences help you grow, and she deserves the opportunity to be a part of every part of our lives!I hope you will consider supporting my campaign to help Kaylee continue to live a safe, happy life being fully involved in her community and church! Every donation big and small helps get us closer to our goal! Sharing this campaign will also spread awareness of this need so please share this on all your platforms!

Please pray for our family and share Kaylee’s situation with your church and prayer groups because we know God can move this mountain. He has done it time and time again for Kaylee and we know He is going to do it again!!! Thank you!!!

May 22, 2026

We are here at Katy Days Festival. Come see us and enter our gift card raffles!!!

May 19, 2026

We are going to be fundraising at Katy Days in Parsons Kansas this weekend! Please stop by our booth and say Hi!