Feeding Myles

Feeding Myles is...... an adventure. An always changing new adventure. Sometimes he doesn't mind, sometimes he hates it, sometimes he tries to help, sometimes he tells me to feed his button, sometimes he makes silly faces, sometimes he tells me he's going to puke, and sometimes he does puke. Get the idea?! Always an adventure!


This is a bolus gravity feed. Basically, after mixing his special formula, I hook up his extension set to his button in his tummy. That gets hooked up to a 60 ml open ended sryringe. I slowly let the formula run through into his tummy.


He "eats" about 9 oz at a time and it took a VERY LONG TIME to work up to 9 oz! He's a happy boy for tonight's feeding. He won't ever drink it. YES, we've tried.


This boy has been through so much and still amazes me. He's brave and tough and loving.


Presently, he thinks his button is his super power. I want him to always be happy with who he is. He's ok with showing it to people still. We treat it like its totally normal or special. If we react to it not being normal that's when he'll think he's not normal. Every one has their differences and that is ok! 

What do I think? I think he has two belly buttons. One that gave him life and one that saved his life.

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