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.
Friday, September 10, 2010
Big Weekend Event Coming Up: Tube Free for a Day!
Auggie will be going tube free for 8-10 hours this weekend (or as long as I can bear it) as we experiment with solids. He has not done very well taking solids and I think it's because of that damn tube in his throat. He smacks his lips when he sees us eating and he eagerly pulls his bowl towards him, but when I swipe his lips with some food and he sucks it in, he often vomits. He does not open his mouth for a spoon or my finger, instead I have to get some on his lips and then he sucks it in. I'm also hoping that he will nurse more when off the tube. I will post a report card after the weekend.
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