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Monday, February 8, 2016

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:
3 weeks old

4 weeks old, 7 lbs 8 oz and spitting up everything
The nightly routine of "do whatever it takes to get her comfortable 
When I think about Raya's "before," this is the picture that comes to mind. A pale, skinny, 8 pound 2 month old who cried for hours on end no matter what we did for her, spit up and projectile vomited no matter what we did for her, was starting to refuse to eat, and stopped gaining weight. I still remember laying her on a blanket on my bed and taking pictures of her after her 2 month well-check. At the time, all I saw was my baby. Now, I look at it and see a baby that needed help.
January 2010

I suppose this could be considered our "after."

Now we have a beautiful, vivacious 6 year old who is loving kindergarten, enjoys playing with her friends and her siblings, works hard in her therapies, pushes through her daily struggles with a {mostly} happy spirit, and adds a huge and unique energy to our family and home. Raya has a presence that cannot be ignored.

We can't fully appreciate the difference between before and after without looking at the "during" though. We went from a baby who was weak and becoming malnourished, to a baby who had the strength to meet most of her developmental milestones in a normal time frame because of the nutrition she was receiving through the tube.

She learned to sit up:

She learned to crawl:
Trying to crawl her NG tube out of her nose on the day of her G tube surgery
She learned to pull herself to stand:

She learned to walk:

She learned to climb on playground equipment:

She learned how to climb out of her crib:

She learned to jump:

She started preschool:

She learned to ride a tricycle:

She learned how to run:

She learned to swim (well, we're still working on that...):

And she started kindergarten:

And NONE of that would have been possible without the feeding tube! 

1 comment:

  1. I started reading this blog when Raya was almost three years old, she has grown so much :)


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