Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 Hi my name is and my daughter's name is Chelsea. She is 6 years old and has just been diagnosed with mito ? .the doctors have been stumped since she was 2months old because she never follows the norm for anything until maybe now I have been reading the emails and am starting to get a better look into what has been going on with her. Some background. I have a healthy 8 year old boy and a healthy 3 year old girl and my husband is very supportive. Chelsea just quit breathing on us at 2 months old twice and since i am nurse i know what I am talking about. Until you get so many people talking over you, you have no idea what any one is talking about. They thought Chels had pneumonia and then a plug. But Dr. Bauer in Kansas City found out her Diaphragm was not working and she had to be put on a vent and g-tube placed in the beginning. NOw we have g-tube, vent for night sleeping, leg braces, back braces,glasses, hand braces for fine motor, and suction bag of course. they had no idea what the cause was until i pushed them do further testing 6 months ago. In the very beginning Chels had trouble eating. she would take 2 ounces and projectile vomit 2ounces back at you. She just would not burp. The doctors thought I was just a nervous mother. guess not . well i don't have much else to say so please some body write me. Quote Link to comment Share on other sites More sharing options...
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