Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi and welcome to the group. We are pretty new to the group as well. My daughter Sierra now has profound hearing loss, she just turned three years old last November. How bad is your daughter's hearing? We are meeting with the surgeon Dr. Choo (from Cincinnati Children's Hospital) on Wednesday. After that we still have to meet with the cochlear implant team. I think we will be going with the MED-EL since there is a good probability that she will need to have MRI's in the future (Sierra has Crouzon's syndrome) and has had multiple surgeries already. We have already received information from two of the companies that make the cochlear implant. I wish I could help more, but we are just in the beginning of the journey as well. Take care and God Bless. Natasha~Mommy to~ (8/25/97) & *Sierra (11/28/00) *Multiple Craniosynostosis, Crouzon's Syndrome, Asthma, Trach, Tracheamalacia, Subglottic Stenosis, Chonal Atresia, FTT, GERD, G-tube & Nissan, Profound hearing loss. Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm Cochlear Implant I am just looking for help. My 22 month old daughter has been approved as a candidate for a cochlear implant. In fact they have told me that they have put her on the " fast track " to the implant surgery. Yes, we still have the choice whether to do the implant or not but I really believe that this needs to be done. My big problem is that I will need to do a lot of research and preparation because she is scheduled to have her implant done on March 1st. At times I feel like the world is just spinning. Any advise or help that anyone can give me would be greatly appreciated. All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 How profound is her loss? What is the fast track and why does it need to be done so quickly? Have you had a trial with hearing aides (or is that no longer part of the protocol). YOu are right to ask questions of the doctors. She is still young yet...if you are not ready for your duaghter to be implanted then delay the surgery a couple months. At times I >feel like the world is just spinning. Any advise or help that anyone >can give me would be greatly appreciated. > _________________________________________________________________ Tired of slow downloads? Compare online deals from your local high-speed providers now. https://broadband.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 > How profound is her loss? She hears at 80 dcbls in the right ear and they may have had a response at 105 in the left but other than that received no response in her left ear. She has been aided for over a year now. We got her hearing aids within just weeks of finding out that she was hearing impaired and has worn them faithfully. Really the big reason that she was put on the fast track to an implant is because of all the research out there that shows that the sooner the implant the better results they find. Her ENT wanted to move on it last month but we really did not have good hearing results. She does still have to go through a couple more appointments before she is truly approved as a candidate. She has one with the aural therapist this month and the behavioral pediatrician next month. And I am still waiting for a call back from the psychologist. But they put her name in the surgery book so that once she went through these final hoops we would not have to wait another couple months for the surgery. Of course it is ultimately up to us. We have the final say in this. And it is not really that I am not for the implant for her as I am interested to know what other people's experience is with this and then how do I prepare for all the work that we need to do afterwards. Basically in both the physician's opinion and the audiologist's, if we want her to be oral this is our best shot at it. Mother of 4 Marcus 13 hearing 11 hearing Jon 9 hearing Annika 22 months severe to profound hearing loss> > > > _________________________________________________________________ > Tired of slow downloads? Compare online deals from your local high- speed > providers now. https://broadband.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 , my daughter has had her implant for 5 years.. She's doing wonderfully. Her speech is clear but we have lots of language to work on.. She was implanted at 4 and 1/2, she was not born with a profound loss.. It would have been better had she been implanted at an earlier age. I work with birth to 3 hearing impaired babies/children. I'm so jealous that children are being implanted earlier.. I wish my daughter had been.. Any questions, I'd be glad to answer what I can.. I'm not an expert, just mom. Tahna, mom to Nellie age 10 CI Of course it is ultimately up to us. We have the final say in this. And it is not really that I am not for the implant for her as I am interested to know what other people's experience is with this and then how do I prepare for all the work that we need to do afterwards. Basically in both the physician's opinion and the audiologist's, if we want her to be oral this is our best shot at it. Mother of 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 , my daughter has had her implant for 5 years.. She's doing wonderfully. Her speech is clear but we have lots of language to work on.. She was implanted at 4 and 1/2, she was not born with a profound loss.. It would have been better had she been implanted at an earlier age. I work with birth to 3 hearing impaired babies/children. I'm so jealous that children are being implanted earlier.. I wish my daughter had been.. Any questions, I'd be glad to answer what I can.. I'm not an expert, just mom. Tahna, mom to Nellie age 10 CI Of course it is ultimately up to us. We have the final say in this. And it is not really that I am not for the implant for her as I am interested to know what other people's experience is with this and then how do I prepare for all the work that we need to do afterwards. Basically in both the physician's opinion and the audiologist's, if we want her to be oral this is our best shot at it. Mother of 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hey Welcome to the group. My daughter has a similar loss and she is now eight years old. She just received her implant in November and was turned on Dec 17th. She has done well prior to the implant as she was identified a birth however, we had the chance to implant when she was 2 1/2 and we declined at that time. I regret this because it has been a struggle for her. She has only had the implant a short time now and she loves it. She is hearing more environmental sounds and her learn to listen work is going so fast I can hardly keep up. We had to go to another doctor to find someone to do it now as she has been doing well with only one hearing aid, but I can already see that this was a good choice. (and I like this other place better). Regards Martha Soltani Sara's Mom, severe/profound hl L digifocus II superpower, R clarion Hi Res CI Re: Cochlear Implant > > > How profound is her loss? > > She hears at 80 dcbls in the right ear and they may have had a > response at 105 in the left but other than that received no response > in her left ear. She has been aided for over a year now. We got her > hearing aids within just weeks of finding out that she was hearing > impaired and has worn them faithfully. > > Really the big reason that she was put on the fast track to an > implant is because of all the research out there that shows that the > sooner the implant the better results they find. Her ENT wanted to > move on it last month but we really did not have good hearing results. > > She does still have to go through a couple more appointments before > she is truly approved as a candidate. She has one with the aural > therapist this month and the behavioral pediatrician next month. And > I am still waiting for a call back from the psychologist. But they > put her name in the surgery book so that once she went through these > final hoops we would not have to wait another couple months for the > surgery. > > Of course it is ultimately up to us. We have the final say in this. > And it is not really that I am not for the implant for her as I am > interested to know what other people's experience is with this and > then how do I prepare for all the work that we need to do > afterwards. Basically in both the physician's opinion and the > audiologist's, if we want her to be oral this is our best shot at > it. > > > Mother of 4 > Marcus 13 hearing > 11 hearing > Jon 9 hearing > Annika 22 months severe to profound hearing loss> > > > > > _________________________________________________________________ > > Tired of slow downloads? Compare online deals from your local high- > speed > > providers now. https://broadband.msn.com > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hey Welcome to the group. My daughter has a similar loss and she is now eight years old. She just received her implant in November and was turned on Dec 17th. She has done well prior to the implant as she was identified a birth however, we had the chance to implant when she was 2 1/2 and we declined at that time. I regret this because it has been a struggle for her. She has only had the implant a short time now and she loves it. She is hearing more environmental sounds and her learn to listen work is going so fast I can hardly keep up. We had to go to another doctor to find someone to do it now as she has been doing well with only one hearing aid, but I can already see that this was a good choice. (and I like this other place better). Regards Martha Soltani Sara's Mom, severe/profound hl L digifocus II superpower, R clarion Hi Res CI Re: Cochlear Implant > > > How profound is her loss? > > She hears at 80 dcbls in the right ear and they may have had a > response at 105 in the left but other than that received no response > in her left ear. She has been aided for over a year now. We got her > hearing aids within just weeks of finding out that she was hearing > impaired and has worn them faithfully. > > Really the big reason that she was put on the fast track to an > implant is because of all the research out there that shows that the > sooner the implant the better results they find. Her ENT wanted to > move on it last month but we really did not have good hearing results. > > She does still have to go through a couple more appointments before > she is truly approved as a candidate. She has one with the aural > therapist this month and the behavioral pediatrician next month. And > I am still waiting for a call back from the psychologist. But they > put her name in the surgery book so that once she went through these > final hoops we would not have to wait another couple months for the > surgery. > > Of course it is ultimately up to us. We have the final say in this. > And it is not really that I am not for the implant for her as I am > interested to know what other people's experience is with this and > then how do I prepare for all the work that we need to do > afterwards. Basically in both the physician's opinion and the > audiologist's, if we want her to be oral this is our best shot at > it. > > > Mother of 4 > Marcus 13 hearing > 11 hearing > Jon 9 hearing > Annika 22 months severe to profound hearing loss> > > > > > _________________________________________________________________ > > Tired of slow downloads? Compare online deals from your local high- > speed > > providers now. https://broadband.msn.com > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hey Welcome to the group. My daughter has a similar loss and she is now eight years old. She just received her implant in November and was turned on Dec 17th. She has done well prior to the implant as she was identified a birth however, we had the chance to implant when she was 2 1/2 and we declined at that time. I regret this because it has been a struggle for her. She has only had the implant a short time now and she loves it. She is hearing more environmental sounds and her learn to listen work is going so fast I can hardly keep up. We had to go to another doctor to find someone to do it now as she has been doing well with only one hearing aid, but I can already see that this was a good choice. (and I like this other place better). Regards Martha Soltani Sara's Mom, severe/profound hl L digifocus II superpower, R clarion Hi Res CI Re: Cochlear Implant > > > How profound is her loss? > > She hears at 80 dcbls in the right ear and they may have had a > response at 105 in the left but other than that received no response > in her left ear. She has been aided for over a year now. We got her > hearing aids within just weeks of finding out that she was hearing > impaired and has worn them faithfully. > > Really the big reason that she was put on the fast track to an > implant is because of all the research out there that shows that the > sooner the implant the better results they find. Her ENT wanted to > move on it last month but we really did not have good hearing results. > > She does still have to go through a couple more appointments before > she is truly approved as a candidate. She has one with the aural > therapist this month and the behavioral pediatrician next month. And > I am still waiting for a call back from the psychologist. But they > put her name in the surgery book so that once she went through these > final hoops we would not have to wait another couple months for the > surgery. > > Of course it is ultimately up to us. We have the final say in this. > And it is not really that I am not for the implant for her as I am > interested to know what other people's experience is with this and > then how do I prepare for all the work that we need to do > afterwards. Basically in both the physician's opinion and the > audiologist's, if we want her to be oral this is our best shot at > it. > > > Mother of 4 > Marcus 13 hearing > 11 hearing > Jon 9 hearing > Annika 22 months severe to profound hearing loss> > > > > > _________________________________________________________________ > > Tired of slow downloads? Compare online deals from your local high- > speed > > providers now. https://broadband.msn.com > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > > Quote Link to comment Share on other sites More sharing options...
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