The amazing journey of a brave, fun-loving, creative boy who is enduring and has overcome so much already: failure to thrive, feeding tube dependency, food allergies, silent reflux, pulmonary valvar stenosis, chiari malformation, syringomyelia, retroflexed odontoid, mild bilateral hearing loss, a blood coagulation disorder, and Noonan Syndrome.
Saturday, August 14, 2010
Tube Day #75
Auggie is not gaining very much weight these days and we're wondering if he is just vomiting too much (he vomits 3-4 times daily). He weighed 14 pounds 9 oz. today. We have adjusted his formula now to 27 calories per ml at a rate of 28 ml per hour hoping that it will help. After seeing the feeding specialist yesterday we are now abandoning trying to use a spoon to feed him. Instead we are focusing on letting him play with his food and possibly placing a little food on our fingers and just gently touching his mouth to give him a taste. There is so much to research and read on the topic of tube weaning, it's overwhelming. I don't think we are ready to start weaning yet, but hopefully in 1-2 months after we've done all of our research and discussed our plans with the doctors we can set the plan in motion.
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