Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 and Kathy- It is not unusual for a child with CHARGE to be profoundly deaf, so I don't want to give you false hope or even cause you to question something that might not need questioning. However, I think it's important to know that infant testing can be inaccurate. Even the ABR (with the probes on her head) isn't foolproof. My daughter is 2.5 yrs old. She failed her newborn hearing screening with mild to moderate loss. She also has failed every ABR and behavioral hearing test since. All of her tests show a mild to moderate loss in atleast one ear, but she acts as if she hears just great. So... be sure you sing lullabies and talk to Lea even if you think she can't hear you. She may hear more than you think. Even if she doesn't hear your words, she'll feel your breath, see your lips move, etc. You are doing so great at dealing with all this! We also got our diagnosis at birth. Aubrie had her initial evalution for Early Intervention at 10 weeks old. She was receiving PT, OT, and ST at the hospital before that. I think that it has helped all of us to have had the support of professionals from such an early time. You are definitely on the right track. Lea will amaze you in time. We were told that Aubrie was possibly deaf-blind. I would sing to her not knowing if she could hear me. She didn't make eye contact or smile at me for ages. But when she finally did... boy, did she blossom! She's got visual impairments and probably some hearing impairment, but it's much milder than we ever dared to hope for. I'm wishing the same for you! Michele W mom to Aubrie (29 mos) CHaRgE and (8 yrs), wife to DJ, in IL west@... Quote Link to comment Share on other sites More sharing options...
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