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Showing posts from February, 2016

FTAW 2016- Development: The Power of Tube Feeding

Today's topic:
Development: The Power of Tube Feeding
What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding?



Development is not the first thing that comes to mind when the topic of tube feeding is discussed. The first thing that comes to mind is survival. Ironically, it is the act of living in survival mode that inhibits developmental progress for many children. I remember sitting in a class in high school and listening to the teacher lecture about Maslow's Hierarchy of Needs. It looks something like this:

I can still remember the teacher talking about the most basic, primal human needs. The bottom of the pyramid contained physiological needs like food, water, sleep, breathing, and shelter. She explained that once those needs are met, the individual moves up to the next tier of the hierarchy to the safety and security needs, such as employment, financial stability, health, and…

FTAW 2016- Nutrition: The Power of Tube Feeding

Today's Topic:
Nutrition: The Power of Tube Feeding
There are long-term consequences to malnutrition. For some people, there wouldn't be life without tube feeding, but for others, they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren't able to eat enough on their own to get the nutrition they need.

Nutrition can be a touchy subject among tube feeding families. In the tube feeding world, I think many of us have different feelings toward nutrition in its various forms at different points in the tube feeding journey. Before Raya was even born, I planned on breastfeeding her just like I had done with her 3 older siblings. It wasn't that I had anything against formula, I just wanted to breastfeed. (and formula is 'spensive) One of the hardest things that happened in the beginning of all this was being told that my breast milk was literally harming my daughter and that I had to stop giving it to her. For a while, I kept pumpin…

FTA Week 2016- Energy: The Power of Tube Feeding

Today's FTA Week topic is:

Energy: The Power of Tube Feeding
Post your story or pictures of you or your child thriving with energy as a result of tube feeding. Or post before and after pictures to show how much tube feeding has improved you or your child's energy.


I've seen a lot of really incredible before and after pictures over the years that I've worked with the Feeding Tube Awareness Foundation. We've seen so many children who have struggled for months or even years to keep from losing weight that they can't afford to lose. They are skin and bones. Shadows of the children they used to be, and a far cry from their peers. Then they get feeding tubes and the life is restored to them. They gain weight. They grow. They run and play and do all the things they didn't have the energy to do before.


Our before and after pictures aren't quite like that, but they are incredible nonetheless. This is our before:

When I think about Raya's "before," th…

FTAW 2016- Awareness: The Power of Tube Feeding

It's Feeding Tube Awareness Week again! Today's topic is:

Awareness: The Power of Tube Feeding
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding - most of which you can't see.

There are many reasons why Raya has a feeding tube. There were many reasons why she got one at the age of 10 weeks old, and there are many reasons why she still has one 6 years later, so I will explain both.

It started a little something like this:

And this:

In short, we had a miserable, refluxy, crying, screaming, projectile vomiting baby. She wasn't our first refluxy baby. She wasn't our first to spit up what seemed like most of what she had eaten. She wasn't our first to cry more than the average newborn either. She WAS different from the others though. She was the first of our babies to projectile vomit. She was the first to not respond to the comfort measures and interventions that had helped the others, a…