Kaylee

Tell us your story.

My name is Robin Taylor and I had my daughter, Kaylee, in 2013.  She was my first and only child. I had a normal pregnancy, and Kaylee was born a week late.  It was a difficult labor, however, and Kaylee also had meconium in her system which required her to go to the NICU for 4 days.  After the 4 days she was cleared to come home.  The first 6 months were typical, but then we started to notice she didn't meet her milestones and started early intervention by the age of one.  She receives speech therapy, occupational therapy, physical therapy, music therapy and special education. In 2016 Kaylee received the diagnosis of cerebral palsy.  Later would come additional diagnoses of nephrogenic diabetes insipidus, renal tubular acidosis, salt-wasting disorder, seizures, neurogenic bladder and failure to thrive.  Sadly, Kaylee's father, Keith, also received a diagnosis of colon cancer in 2016 and passed away in 2017 at the age of 40.  It has been difficult to do this journey on my own, but I do have great support from Kaylee's grandmother, Karen.  In 2019 Kaylee had a vesicostomy surgery for her neurogenic bladder, in 2020 bi-lateral hip surgery for hip dysplasia, and in 2022 she received a g-tube for failure to thrive.

I work full time for NYS and a caregiver to Kaylee.  Kaylee goes to school at the Center for Disability Services in Albany, NY.  She loves school and is very social.  In our spare time Kaylee enjoys bowling and playing baseball with the Captial Region Miracle League.  She also attends a dance class for children with special needs provided by a local organization called STRIDE.  There is another group in our area called the YMCA Circle of Champs that provides monthly activities (such as picnics, field trips, etc.) for disabled children and their families.  We also enjoy camping, visiting with family and playing with our Bernese Mountain dog, Lily, and our cat Sonja.   

What was your initial reaction when you first learned your child would need a feeding tube?

Kaylee just wasn't gaining enough weight and doctors were concerned about her growth. They suggested a g-tube.  I was so worried about her having another surgery and concerned that I would have to deal with a feeding tube daily.  

What would you like to say to other Tubie families?

Getting a g-tube was the best decision ever.  When she got the g-tube in 2022 she only weighed 33 lbs.  Now she is up to 58lbs - a 25lb gain over 3 years which is amazing!

What advice do you have for a Newbie Tubie?

Don't be scared, after a couple of feeds, you'll be a pro.  Sometimes you may need to change the formula to find the right one for your child, as g-tubes can bring on acid reflux.  Once that is all figured out it is smooth sailing.

How did you tube feed before the FreeArm Muscle?

At first we used a pump for feeding.  That was fine, but it is a pain bringing the pump out to places for feeds.   Then we switched to gravity feeds which worked better for us, but I had to hold the syringe up in the air while the formula went into her belly.  I could use an IV pole to hold it, but that was not possible when going out. It was tiring on my arm to hold it and there wasn't any other way I could find that would keep the tube and syringe stable.

Where is your favorite place to use your FreeArm Muscle and why do you love it?

The FreeArm is amazing!  Now I just clamp that onto a tray (or table, anything really) and pour the feed into her syringe and I no longer have to stand there holding it for her.  It's flexible, so it's easy to bring with us anytime we are out and she'll need a feed.  Kaylee can watch her videos or continue to play while she is getting her feed.  In 2024 we took a trip to Boston Children's hospital and had to stay at a hotel overnight.  I was able to bring the FreeArm and clamp it onto a table to feed her.