Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Friday, February 24, 2012

KAIBOSH

The same doctor that told Willem he could have a taco has now changed directions.  The GI doctors do not want us to keep Willem clamped because they're afraid that real food will cause another stricture, or worsen the strictures he already has.  I get that but don't you dare tell my 10 year old, to his face, that he can have a taco and then have your nurse call the house to tell us that he cannot.  I thought it was a stupid idea anyway and there was no way in Hades that I was going to let him have a taco but c'mon...  GI docs don't like my idea of natural foods going the natural way through his system so I'll do what they say.  He is allowed 2 feedings by mouth of things that aren't too aggressive.  Some examples I was given by the nurse were Saltines and Froot Loops.  That's awesome: bleached over processed crackers and chemically colored and flavored cereal.

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