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My Tubie

I am the proud momma of a tubie! My son, Kaden, received his G-tube last March at the age of 9, after developing a movement disorder that made it almost impossible to eat.

Kaden was born with a congenital brain malformation and condition called Dandy Walker Syndrome. At the age of 2, he developed a form of epilepsy known as LGS, or Lennox Gastaut Syndrome. These things combined had always made it a bit more difficult for our boy to consume the proper amount of nutrients. Last year, it became so very concerning, he was admitted to the hospital and a feeding tube was recommended. They were not sure if or when this movement disorder would stay or go, so they wanted to error on the side of caution.

You see, all my adult age I only had one perception of feeding tubes! “ It’s a last resort for sick kids or adults and they must be in bad shape to need it”. So when the doctors came in to present this suggestion of Kaden getting a feeding tube, I was honestly devastated! At that point, I decided to reach out to friends who had already walked this path with their child, and to my surprise, not one of them discouraged me! They only had positive experiences and wouldn’t have changed their decision if given the opportunity! The benefits seemed to outweigh any negatives I could come up with, so we proceeded with a feeding tube. I knew it was the right decision but that didn’t make it easy. I cried a lot. A LOT!

It’s almost been a year since he has his tube placed and it WAS the best decision! Luckily his movement disorder went away on its own, and now he’s eating by mouth some each day. He is slowly putting on weight and is getting all the necessary nutrients he needs through an organic food blend. We are also able to give him fluids and medications by tube which has made life so much easier!!

Feeding tubes are not weird, they are just another method by which some eat! Talk to your kids about them; it’s only “weird” if they are never educated about feeding tubes and what they are used for! Happy Feeding Tube Awareness Week from me and my tubie!!

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