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[quote=Anonymous][quote=Anonymous]What does KKI do that is barbaric? [/quote]

Exactly - I have to laugh at that post.  KKI and Johns Hopkins have done for us what no hospital or Doctor in the Washington DC area could; not sibley (where she was born, ill equipped for special needs), not Georgetown (great care, compassionate and caring doctors, but not enough thinking outside of the box), and certainly not Childrens (useless - don't return calls when they promised to do so, nursing staff and doctors that seemingly knew less than us throughout multiple visits across multiple disciplines).

He's no longer at KKI, but if you can track down a doctor named Dr. Anil Darbari, he would be worth a shot.  He worked at Hopkins, and was the head of GI at KKI.  He did a number of studies on our daughter, and was the one that ultimately performed the GI tube surgery.  BTW - I will note, that GI tubes are not without their risks, and special care needs.  Please research that before making your final decision.  For us it was absolutely worth it.  I mean, aside from the wonders it's done for keeping our little girl fed, it's even been a blessing in so far as enabling us to administer medicine while she sleeps.  
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