Friday, March 14, 2008
Bethany's visit to Children's Hospital
Bethany had two appointments at Children's Hospital this past Tuesday. She first went to the Audiology department to have a follow-up hearing screening. They had her come back again because she failed her screening a couple of months back. We also went to our first appointment with the ENT doctor. He informed me that she has not had frequent enough ear infections to need ear tubes yet. She will return to both these clinics again in 6-8 weeks. They are concerned about her hearing because she passed the hearing test they did in the NICU, but she has failed every one since then. Her ENT doctor gave me some spray to hopefully help with her adenoids being inflamed. He is concerned about her growth on the growth chart because she has already begun to level off. I had to explain to him about her Robinow Syndrome that she was diagnosed with. The ENT doctor checked in her ears for any signs of fluid or infection and saw none. The next day when I took her to the pediatrician she had an infection in her right ear. That to me was very frustrating, because when they did her hearing screening it showed she had fluid on her left ear and her right ear was normal but a little stiff. So it is strange to me how she got an infection in her non-fluid-filled ear in one day. When they weighed her Wed. she was 17 pounds and 8 ounces. She is gaining weight. Well that's it for now.
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Here is a link to more information about the genetics of Robinow Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Robinow_Syndrome/329. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA
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