Tom got his g-tube two weeks before his first birthday. He will be four this fall and we still have it. He is more than 50% oral fed now, but we still struggle with getting Tom to eat by mouth. There is no medical reason why he cannot eat by mouth. He just doesn't seem to have much a hunger drive. Unfortunately, he would happily waste away! That can be hard to understand but that's the situation. We have good eating days and bad eating days, but overall there is progress.
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| An old picture. He started with an NG tube. I hated that thing! |
It's been a long and frustrating process to teach Tom to eat by mouth. But that g-tube improved Tom's quality of life and I don't regret it one bit. He is happy, healthy and full of energy.
We use a combination of formula (Neocate Splash E028), blended food, and oral eating to meet his calorie needs. I know that eventually he will reach the point where he doesn't need the tube. I hope it's before kindergarden! That would be so nice.
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| Tom's Dad giving Tommy a bolus feed. |
I collected most of my posts about Tom's g-tube, our feeding clinic experiences, and our everyday feeding struggles. If you are considering getting a feeding tube for your child or if you are interested in working with a feeding clinic you might find these posts interesting. I hope they are helpful. Feel free to ask a question by leaving a comment. Enjoy!
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| My happy, healthy tubie enjoying the swings at the park! |
Thomas Marshall Does It All G-Tube & Feeding Therapy Collection
Great post! Thanks for sharing!
ReplyDeleteThanks for sharing this and collecting all your posts. We are about to head to Spectrum Pediatrics in VA for a wean for my son so collecting all the knowledge I can beforehand.
ReplyDeletePS - love to send you some meal samples of our 100% real food meals for people on tubes: http://justfoodblends.com and our story: http://www.indiegogo.com/projects/just-food-real-food-meals-for-tube-fed-people/x/3054196