Feeding Tube Awareness Week....

As the week is almost over I wanted to remind you that we sometimes love a tubie.  I tubie refers to a child that has a feeding tube.  That was us once and may be again.  With Ryder's illness he sometimes needs some help with his nutritional needs.  He is still fed 28 ounces of a special formula everyday even though he is almost 2.  Even with the formula he is not gaining weight as he should. I the last year he has gained less than 6 pounds and in the last month he has lost 6 ounces meaning he has gained NOTHING in a month! Part of this is because if you look at the rest of his diet its just that "diet" food.   It was a huge thing for us yesterday that he ate an entire Peanut Butter and Jelly sandwich for dinner (and I believe he had some for lunch).  So are we loving a tubie right now?  No but we have been and still might be again.  Please don't stare...ask questions!  Most tubies and their parents are more than happy to answer your questions if you are being curious don't be mean!  These children face enough challenges. 

In the hospital after getting his NG tube (3/5/2013)

Smiley boy at home

How we kept his tube attached when not being used

Tubie Tubbie!

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