The Button

Mic-Key Low Proile Gastrostomy Feeding Tube.

Also known as the Feeding Tube.

Or known by our family the "button".

Diagram of what the button looks like.

Matthea was diagnosed with a genetic disorder called Cri-du-Chat at the age of 10 months. She was also tested positive for aspiration. Which means that she inhaled her food, literally. The food would not just go into her stomach, but also her lungs. So, the "button" was inserted and life changed for us. This was almost 6 years ago.

About a year ago we started feeding Matthea by mouth in small portions. And all was going well.

This has been the first winter that she has not had any lung infections or extremely high fevers. It's been wonderful!

About three weeks ago we were given the green light to stop using the button and let her eat and drink by mouth only. I was elated, yet nervous. Thoughts running through my head...

"This is the year of jubilee for our family!"

"We really are going to be "button-free" someday soon!"

Then....

"What if she aspirates and we end up in the hospital again with tubes running all over the place and machines screaming at us?"

"What if she loses weight? They are already concerned about her being too skinny."

"Can I do this?"

Well....

She's been doing great! (and so have I for the most part) Just this past week she gained 400grams.....so, we'll see. We meet with another doctor on March 22nd to show him the collected data (daily temperature, daily fluid intake, and weekly weight) and see what he thinks. My hope is that in 6 months we will be taking out the last button and be done with it.

There will be one big celebration the day that happens. We'll keep you posted, so you can celebrate with us!

Matthea with her soymilk, which she loves!