Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Hello Everyone I have just joined this group. I live down in Florida on the West Coast side. My son, who just turned one was diagnosed with Charge at 5 months. He has fluid in ears and abnormalities of the cocolear. We are still in the process of finding what kind of hear impairment he has. I know he can hear but it is how he hears it. He has the coaneal atrisia, g-tube, and a small kidney due to reflux. I apologize with my spelling. We have recently started talikng with Dr Nurko and will be visiting him soon. His gross motor skills are not to delayed. He just started crawling and pulling him self up on furniture. He loves to walk with my assistance. My biggest battle with dealing with Charge is the doctors are not fully aware of it. They are educating themselves as I am. Also, trying to have a doctor help with coordinating his care. Everyone looks at him in sections, nobody looks at him as a whole person. That is truly frustrating. If anyone has any suggestions on how to make it easier, let me know Quote Link to comment Share on other sites More sharing options...
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