All About Stephanie

This Blog is for my daughter Stephanie. She is a four year old girl born with an omphalocele, several heart conditions, gastroesophageal reflux (GERD), kidney reflux, chronic pain, pseudo bowel obstruction, and g tube (for feeding in the past but now exclusively for venting). She has been surgically repaired, and has had a fundoplication and an appendectomy.

Stephanie has been unwell since birth with her many battles. However, she actually was doing very well from Dec 2004 to July 2005 until she had a bowel obstruction which sent her back to the operating room yet again. She has really not recovered from that surgery. Stephanie is currently admitted to hospital every sixish weeks for bowel rest. She still suffers chronic pain, dysmotility and pseudo bowel obstructions, and is taking various medications to help her cope through each day.

Stephanie is really our little fighter. She is a feisty, very strong-willed child and will demand the medical services she feels she needs. She knows when she needs to be admitted and will actually demand that we take her to hospital to see specific physicians. However, since July 2005 we see a great change in Stephanie. She has become very frustrated, at times argumentative and aggressive, often leading to wild tantrums which we believe stem from the pain. In short, the pain makes her angry so she becomes frustrated and then aggressive, leading to a wild tantrum which in turn aggravates her dysmotility; her abdomen becomes distended and the pain worsens. We are fighting a vicious circle, which is why we hope this blog can help Stephanie and our family find the medical miracle that will make this all go away.