Feeding tube awareness week!

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This week we celebrate something pretty special – feeding tube awareness week. During this week we are supposed to educate others about feeding tubes – what they are, why we use them, and how normal they are.
Isaac has been tube fed since birth, literally. He had his first tube placed three days after he was born. Since then we’ve had a few different tubes- some feed straight into his intestines, some straight into his belly. Regardless of the type, he has always relied on this tube for nutrition.
Over the years we have dreamed of a day without the tube, but overall we have learned to love and accept it.
After Isaac’s big surgery last year it seemed to be widely believed that this was the end for him – no more tubes. Unfortunately, this was not the case.
Though Isaac now has the ability to eat, he hasn’t for 7 years. He has lost out on all of the things babies and kids do to learn to eat, so now we have to work on that.
In the meantime, we let him try anything he wants. This often leads to the purchase of a meal, so that he can chew up and spit out a few different items then declare himself “all done”. THIS IS OKAY. This is huge! He is willing to try, he is interested and he is able.
Isaac purchases a school lunch every day, and every day he tries a few things – he might eat a bite or two of his favorites (pizza and broccoli!), and then he throws the rest away. Believe it or not, this is a win. He is socializing, and trying – that’s more than we can ask.
So, this week we celebrate tubies everywhere – and the teams that are working so hard for them!

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