G-tubes and Mouth Eating

Raising a child fed by g-tube for medical reasons has been a big part of my daily life for 12 years.  I would never have anticipated getting so casual about it all.  I can do it without looking, I can do it in the dark (I’m starting to sound like Dr. Seuss), I can do it at red lights while driving.   My other kids know how to do it and her next oldest sibling has been doing it since age 12!

Recently our “Little Miss” has graduated from 6th grade which means she’ll be going to Junior High next year.  She wants a “junior high bike” and since it is only 2 blocks from our home, she wants to bike to school every day.  She does not yet realize I’ll have to go with her to help her cross the street, but we’ll tackle that when the time comes.

Another preference that I think is related to this transitional period is that she wants to EAT SOMETHING AT EVERY MEAL WE HAVE!!! This is very exciting to me because the biggest reason our girlie-girl hasn’t eaten in the past is sensory intolerance.  In other words, she can chew (although this has its own challenges because of her low muscle tone and the difficulty coordinating the two sides of her body) and she can swallow.

The sensory intolerance affects her two different ways: the thought of putting food in her mouth is repulsive, and the texture of the food once in her mouth can be repulsive.  Those are the two biggest inhibitors.  We’ve done tons of therapies and training programs to work on this, with very tiny progress.  Desire turns out to be the greatest motivator.

She loves pizza, bologna, hot dogs, ice cream, french fries, black olives. Do you notice anything missing there??  Ha ha! Yup, no fruits or vegetables.  But I’ll worry about that later.  After all, I am still tube-feeding her as she is not consuming enough of other foods.  Maybe she will, I don’t know.

More on this tomorrow!


One thought on “G-tubes and Mouth Eating

  1. I just wanted to say THANK YOU! Your post today was very inspirational and uplifting for me. Our son is exclusively G-Tube fed, and appears to have many of the same issues as “Little Miss”. We are more in the beginning stages as he is only 3 1/2, and tube fed for just over 2 years. We too have tried all of the therapies with very minimal success. It is so nice to hear, that in time, maybe he will start to eat, and hence have a bit of a more “normal” experience. Trying to plan for tube feeds at school, and between activities is terrifying for me; especially because we make homemade blended formulas which are not the traditional, easy method for others to give. Also, how does this affect his relationships with other kids at school? He doesn’t start school until next year, so I have decided to stop worrying about this until then. Anyways…. Thank you again for sharing your experiences with Little Miss. Today it has served to give me hope that someday our amazing little “Non eater” may become a a bigger, stronger, and healthier “eater” – even if it is hot dogs and fries. Have a great day!

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