nicolita98@yahoo.com nicolita98<br/>    Date: Mon Nov 8, 2010 6:17 am ((PST))<br/><br/>I have really enjoyed this discussion and seeing/hearing both sides to the debate on this topic. <br/>My first thoughts were on the bilingual issue. Growing up in a bilingual home (Spanish/English), I know that 2 languages can be taught to young children and they can flourish in both as long as they are separate and distinct. Obviously if the home was ASL then the CI child would need an outside early English language environment to learn both. If the home is English then they need ASL language separate and not associated with spoken English so that they learn to differentiate and not rely on one or the other when trying to communicate in the other. A lot of work but very possible.<br/>Concerning the pilot/show itself, I think that we are all assuming that we "know" what the intent of the film makers of this pilot was/is. That is to say, that some are assuming that it will only have a ASL pro stance and some are assuming that they would be open to showing the CI side of the deaf story. <br/>I too liked the pilot, but, I am very wary of the film makers' motives. Until I know for certain that they both understand the positive CI perspective and would be willing to show that side of the story, I cannot get 100% behind promoting the show. However wonderful the ASL side of the deaf culture is, we as parents to CI children have the responsibility to ensure that their part of the deaf story/culture is portrayed as well.<br/>Has anyone actually been privileged enough to be in contact with the film makers of this show? Would love to hear their perspective on this debate. I know that I am uncertain of the response because of my few interactions with the deaf ASL community concerning my own CI child. But perhaps now is the time to "talk" about this important issue.<br/>Just one Mom's opinions.<br/>-NicoleMom to Wyatt age 3 1/2 N5 activated 12/1/09 and William age 6 normal hearing<br/><br/>--- On Sun, 11/7/10, nkowens2002 <nkowens2002@yahoo.com> wrote:<br/><br/>From: nkowens2002 <nkowens2002@yahoo.com><br/>Subject: [cicircle] Re: deaf family pilot<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Sunday, November 7, 2010, 11:25 PM<br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/> <br/><br/><br/><br/> <br/><br/><br/>   <br/>     <br/>     <br/>     <br/><br/><br/><br/>Sara, I disagree with you that implanted children with Deaf parents who use ASL would not succeed as well as those with hearing parents. My 5 yrs old child is a successful CI user as her spoken language is age appropriate and her both parents are Deaf and use ASL. She has learned all the spoken language at school and at her regular visits with therapists and we didn't have any therapy at home. She also is fluent in ASL which doesn't impact on her spoken language development as it is a separate language. I also have other hearing children who are also age appropriate in spoken language. My older hearing child is even a few years advanced in spoken language although ASL is our primary language at home and we never taught him to speak.<br/><br/><br/><br/>I know a friend whose 4 yrs old son is already a year advanced in spoken language with CIs and his both parents are Deaf and use ASL. He learned all the spoken language at a regular preschool as well as from therapists.<br/><br/><br/><br/>However, if hearing children or deaf children with CI at early ages stayed home with a Deaf parent in an ASL environment most of time instead of attending a spoken language preschool, they may be likely to have some delay in spoken language because of lack of spoken language exposure. Most hearing children who stayed home with Deaf parents would catch up in spoken language naturally and eventually when they start attending school full time in Kindergarten. Some of them also receive speech therapy but I was told that it was really not necessary. It may not make sense to implant a deaf child at an early age if she or he would stay home most of time with a Deaf parent in an ASL environment which is the case in this deaf family pilot.<br/><br/><br/><br/>This TV show would be very educational for the public and it could include both successful and unsuccessful CI users in a few episodes to combat myths about CI.<br/><br/><br/><br/>R.<br/><br/><br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, Sara Christopher <homefiresburning@...> wrote:<br/><br/>><br/><br/>> I don't think it promotes that ASL and Deaf culture is the best for every<br/><br/>> deaf child.  I think it promotes that it works for this family.  I'm also<br/><br/>> willing to bet it would tackle a lot of issues such as not being able to<br/><br/>> communicate with the public, as well.  It would be a much different story if<br/><br/>> the show was of a hearing family embarking on a journey to learn ASL and not<br/><br/>> give their deaf kid a CI (not that I honestly think that is wrong).  One of<br/><br/>> my main motivators in choosing a CI for my daughter was that I wanted her to<br/><br/>> be able to communicate with me in my native language.  That is where I am<br/><br/>> most comfortable and I can communicate best.  I think it's only fair to<br/><br/>> offer the most open communication to her.<br/><br/>><br/><br/>> If I were Deaf, I would want her to communicate in my native language, which<br/><br/>> would possibly be ASL.  If I were Deaf, I would guess that if I got my deaf<br/><br/>> child a CI, the success wouldn't be as obvious because, being deaf, one<br/><br/>> can't really do the therapy needed at home, at least not to the same degree.<br/><br/>><br/><br/>><br/><br/>> It seems quite clear to me that because this family is Deaf, it is what<br/><br/>> works best for them. I don't see it claiming that ASL is the only right<br/><br/>> option for all deaf children.  And to be honest, if I went through what some<br/><br/>> of those Deaf adults went through as children, I'd have a hard time<br/><br/>> understanding the hearing culture.  I don't blame them one bit.  It doesn't<br/><br/>> make their attitude correct....it doesn't make their lies okay, but I can<br/><br/>> feel their pain.  It's hard for them to understand that CI's can make it so<br/><br/>> much easier and they don't want to see other children endure the same<br/><br/>> torture they had to.<br/><br/>><br/><br/>><br/><br/>> [Non-text portions of this message have been removed]<br/><br/>><br/><br/><br/><br/><br/><br/>   <br/>     <br/><br/>   <br/>   <br/><br/><br/><br/><br/><br/><br/> <br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/>     <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (28)<br/>________________________________________________________________________<br/>1.2. Re: deaf family pilot<br/>    Posted by: "nkowens2002" nkowens2002@yahoo.com nkowens2002<br/>    Date: Mon Nov 8, 2010 7:23 am ((PST))<br/><br/><br/><br/><br/>I didn't mean to use the term "unsuccessful" in my response. I was thinking of those who had stopped using CI as it didn't work out for them especially those who received CI at older ages many years ago. CI users could be considered successful if they keep using CI and receive some benefit from it regardless their levels of spoken language. Sorry, I should not have used that term!<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "nkowens2002" <nkowens2002@...> wrote:<br/>><br/>><br/>><br/>> Sara, I disagree with you that implanted children with Deaf parents who use ASL would not succeed as well as those with hearing parents. My 5 yrs old child is a successful CI user as her spoken language is age appropriate and her both parents are Deaf and use ASL. She has learned all the spoken language at school and at her regular visits with therapists and we didn't have any therapy at home. She also is fluent in ASL which doesn't impact on her spoken language development as it is a separate language. I also have other hearing children who are also age appropriate in spoken language. My older hearing child is even a few years advanced in spoken language although ASL is our primary language at home and we never taught him to speak.<br/>><br/>> I know a friend whose 4 yrs old son is already a year advanced in spoken language with CIs and his both parents are Deaf and use ASL. He learned all the spoken language at a regular preschool as well as from therapists.<br/>><br/>> However, if hearing children or deaf children with CI at early ages stayed home with a Deaf parent in an ASL environment most of time instead of attending a spoken language preschool, they may be likely to have some delay in spoken language because of lack of spoken language exposure. Most hearing children who stayed home with Deaf parents would catch up in spoken language naturally and eventually when they start attending school full time in Kindergarten. Some of them also receive speech therapy but I was told that it was really not necessary. It may not make sense to implant a deaf child at an early age if she or he would stay home most of time with a Deaf parent in an ASL environment which is the case in this deaf family pilot.<br/>><br/>> This TV show would be very educational for the public and it could include both successful and unsuccessful CI users in a few episodes to combat myths about CI.<br/>><br/>> R.<br/>><br/>><br/>><br/>><br/>><br/>> --- In XXXXXXXXXXXXXXXXXXXXXXXX, Sara Christopher <homefiresburning@> wrote:<br/>> ><br/>> > I don't think it promotes that ASL and Deaf culture is the best for every<br/>> > deaf child.  I think it promotes that it works for this family.  I'm also<br/>> > willing to bet it would tackle a lot of issues such as not being able to<br/>> > communicate with the public, as well.  It would be a much different story if<br/>> > the show was of a hearing family embarking on a journey to learn ASL and not<br/>> > give their deaf kid a CI (not that I honestly think that is wrong).  One of<br/>> > my main motivators in choosing a CI for my daughter was that I wanted her to<br/>> > be able to communicate with me in my native language.  That is where I am<br/>> > most comfortable and I can communicate best.  I think it's only fair to<br/>> > offer the most open communication to her.<br/>> ><br/>> > If I were Deaf, I would want her to communicate in my native language, which<br/>> > would possibly be ASL.  If I were Deaf, I would guess that if I got my deaf<br/>> > child a CI, the success wouldn't be as obvious because, being deaf, one<br/>> > can't really do the therapy needed at home, at least not to the same degree.<br/>> ><br/>> ><br/>> > It seems quite clear to me that because this family is Deaf, it is what<br/>> > works best for them. I don't see it claiming that ASL is the only right<br/>> > option for all deaf children.  And to be honest, if I went through what some<br/>> > of those Deaf adults went through as children, I'd have a hard time<br/>> > understanding the hearing culture.  I don't blame them one bit.  It doesn't<br/>> > make their attitude correct....it doesn't make their lies okay, but I can<br/>> > feel their pain.  It's hard for them to understand that CI's can make it so<br/>> > much easier and they don't want to see other children endure the same<br/>> > torture they had to.<br/>> ><br/>> ><br/>> > [Non-text portions of this message have been removed]<br/>> ><br/>><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (28)<br/>________________________________________________________________________<br/>1.3. Re: deaf family pilot<br/>    Posted by: "D Solgat" cobbkidz@yahoo.com cobbkidz<br/>    Date: Mon Nov 8, 2010 7:54 am ((PST))<br/><br/>This kind of tags back to my old philosophy....No culture Deaf, religious, or<br/>otherwise should be more important than your own family culture.  If my deaf<br/>children were born to deaf parents who were fluent in ASL their experiences<br/>would be different...if my FASD child had been born to parents who were not<br/>addicts her experiences would be different...It is up to us as parents to ensure<br/>our family culture is valued by our children, and healthy for our children...it<br/>is up to us as families to adapt our family culture to the needs of our<br/>children, and grandchildren and on and on...<br/><br/>FWIW~<br/> Denice Solgat<br/>mom to 11 daughters<br/>Ali, 7, Advanced Bionics Bi-Ci 11/05 & 5/06...Harmony with Fidelity 120 2/07<br/>Rachel, 20, Advanced Bionics CI 6/07...& loving it!<br/><br/><br/>Hearing Journey.com monitor~<br/>Bionic Ear Association volunteer~<br/><br/><br/><br/><br/>________________________________<br/>From: Sara Christopher <homefiresburning@gmail.com><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Sent: Sun, November 7, 2010 2:55:15 PM<br/>Subject: Re: [cicircle] Re: deaf family pilot<br/><br/> <br/>I don't think it promotes that ASL and Deaf culture is the best for every<br/>deaf child. I think it promotes that it works for this family. I'm also<br/>willing to bet it would tackle a lot of issues such as not being able to<br/>communicate with the public, as well. It would be a much different story if<br/>the show was of a hearing family embarking on a journey to learn ASL and not<br/>give their deaf kid a CI (not that I honestly think that is wrong). One of<br/>my main motivators in choosing a CI for my daughter was that I wanted her to<br/>be able to communicate with me in my native language. That is where I am<br/>most comfortable and I can communicate best. I think it's only fair to<br/>offer the most open communication to her.<br/><br/>If I were Deaf, I would want her to communicate in my native language, which<br/>would possibly be ASL. If I were Deaf, I would guess that if I got my deaf<br/>child a CI, the success wouldn't be as obvious because, being deaf, one<br/>can't really do the therapy needed at home, at least not to the same degree.<br/><br/>It seems quite clear to me that because this family is Deaf, it is what<br/>works best for them. I don't see it claiming that ASL is the only right<br/>option for all deaf children. And to be honest, if I went through what some<br/>of those Deaf adults went through as children, I'd have a hard time<br/>understanding the hearing culture. I don't blame them one bit. It doesn't<br/>make their attitude correct....it doesn't make their lies okay, but I can<br/>feel their pain. It's hard for them to understand that CI's can make it so<br/>much easier and they don't want to see other children endure the same<br/>torture they had to.<br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/>     <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (28)<br/>________________________________________________________________________<br/>1.4. Re: deaf family pilot<br/>    Posted by: "Julia Wilson" wilson.feit@yahoo.com wilson.feit<br/>    Date: Mon Nov 8, 2010 8:20 am ((PST))<br/><br/>Denice, I love you!  You always have such a great perspective.  Now, I'm no cultural relativist (there are some things out there that are just wrong, regardless of how deeply they're embedded in some culture), but I totally agree with you here.  And I think that if what we're asking from the Deaf community is that they don't judge us for choosing to implant our children and raising them with sound, or interfere with our access to accurate information about CIs, on the principle that we as parents do get to make some of the fundamental decisions about our families, then it's essential that we accord them the same respect.  The truth of the matter is that it is entirely possible to raise a healthy, happy Deaf child without sound.  (Maybe we think we could do it better with sound, but that's neither here nor there.)  This truth has been contested and denied for over a century, and many Deaf adults today bear the scars.  It's not yet clear that this<br/>message will be a prominent theme in the show, but even if it is, why not let them tell that story, as long as they do it accurately?  It's obvious that the many inconveniences of living without sound are also going to be part of the story, as well as the older hearing son's ambivalence about deafness.  CODAs often have these additional issues while growing up -- having to take on adult-like responsibilities too early, as an interface between their Deaf parents and the hearing world.  It would be very interesting to hear that story as well.<br/> <br/>The bottom line is that I'm still very excited about the show and looking forward to seeing more of it (if it makes it onto a network).  If they present misinformation about CIs or slander parents who implant their children, that will be cause for complaint, big time, and I'm sure we'll generate plenty of it.  If they present an accurate, truthful account of an alternative to CIs, that's fair game.  What we need in this world is more truth and less rhetoric.  We can take Debra up on her offer to put together something comparable about a CI family.<br/> <br/>Julia<br/><br/>Parent of Ben (b. 10-19-07), AB CI in right ear (July 2008), aided left, www.orange-b.blogspot.com<br/><br/>--- On Mon, 11/8/10, D Solgat <cobbkidz@yahoo.com> wrote:<br/><br/><br/>From: D Solgat <cobbkidz@yahoo.com><br/>Subject: Re: [cicircle] Re: deaf family pilot<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Monday, November 8, 2010, 3:54 PM<br/><br/><br/> <br/><br/><br/><br/>This kind of tags back to my old philosophy....No culture Deaf, religious, or<br/>otherwise should be more important than your own family culture.  If my deaf<br/>children were born to deaf parents who were fluent in ASL their experiences<br/>would be different...if my FASD child had been born to parents who were not<br/>addicts her experiences would be different...It is up to us as parents to ensure<br/>our family culture is valued by our children, and healthy for our children...it<br/>is up to us as families to adapt our family culture to the needs of our<br/>children, and grandchildren and on and on...<br/><br/>FWIW~<br/> Denice Solgat<br/>mom to 11 daughters<br/>Ali, 7, Advanced Bionics Bi-Ci 11/05 & 5/06...Harmony with Fidelity 120 2/07<br/>Rachel, 20, Advanced Bionics CI 6/07...& loving it!<br/><br/>Hearing Journey.com monitor~<br/>Bionic Ear Association volunteer~<br/><br/>________________________________<br/>From: Sara Christopher <homefiresburning@gmail.com><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Sent: Sun, November 7, 2010 2:55:15 PM<br/>Subject: Re: [cicircle] Re: deaf family pilot<br/><br/> <br/>I don't think it promotes that ASL and Deaf culture is the best for every<br/>deaf child. I think it promotes that it works for this family. I'm also<br/>willing to bet it would tackle a lot of issues such as not being able to<br/>communicate with the public, as well. It would be a much different story if<br/>the show was of a hearing family embarking on a journey to learn ASL and not<br/>give their deaf kid a CI (not that I honestly think that is wrong). One of<br/>my main motivators in choosing a CI for my daughter was that I wanted her to<br/>be able to communicate with me in my native language. That is where I am<br/>most comfortable and I can communicate best. I think it's only fair to<br/>offer the most open communication to her.<br/><br/>If I were Deaf, I would want her to communicate in my native language, which<br/>would possibly be ASL. If I were Deaf, I would guess that if I got my deaf<br/>child a CI, the success wouldn't be as obvious because, being deaf, one<br/>can't really do the therapy needed at home, at least not to the same degree.<br/><br/>It seems quite clear to me that because this family is Deaf, it is what<br/>works best for them. I don't see it claiming that ASL is the only right<br/>option for all deaf children. And to be honest, if I went through what some<br/>of those Deaf adults went through as children, I'd have a hard time<br/>understanding the hearing culture. I don't blame them one bit. It doesn't<br/>make their attitude correct....it doesn't make their lies okay, but I can<br/>feel their pain. It's hard for them to understand that CI's can make it so<br/>much easier and they don't want to see other children endure the same<br/>torture they had to.<br/><br/>[Non-text portions of this message have been removed]<br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/><br/><br/><br/>     <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (28)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>2. UVA experiences<br/>    Posted by: "mjp3md" monica@bocaner.net mjp3md<br/>    Date: Mon Nov 8, 2010 8:22 am ((PST))<br/><br/>If your child was implanted at the University of Virginia in Charlottesville can you email me offline? I'm looking to hear all feedback, good or bad.<br/><br/>I am a guide with guide by your side. One of my families is going to UVA and needs advice I cannot provide since we used Johns Hopkins.<br/><br/>Thanks!<br/><br/>Monica Bocaner<br/>monica@bocaner.net<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (1)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>3a. expressive results way better than receptive??<br/>    Posted by: "Cindy McMurtrey" cmcmurtrey@charter.net c_mcmurtrey<br/>    Date: Mon Nov 8, 2010 9:07 am ((PST))<br/><br/>You might want to consider receptive language and how hearing with a ci isn't the same as natural hearing. <br/><br/>Was it more a "hearing" test and not a test of understanding?  Were the tests administered with recorded speech versus a live voice, a known speaker versus a new speaker to the child?  Was the child allowed to hear the word more than once or allowed to check that it was heard accurately before being ask for meaning/understanding (asked what word did you hear?) <br/><br/>Our children do so well that some people forget that they are deaf and use technology to hear.  Electrically stimulated hearing from "computer programming" isn't the same as natural hearing, hearing aids, or bone-conductive technology.<br/><br/>Standardized test administered in a standardized way don't always take into consideration a disability.<br/><br/>Just some things to think about.  Talking versus hearing versus reading is how I've come to interpret results on Rachel.<br/><br/>Cindy<br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (5)<br/>________________________________________________________________________<br/>3b. expressive results way better than receptive??<br/>    Posted by: "robinpo_ca" robinpo_ca@yahoo.ca robinpo_ca<br/>    Date: Mon Nov 8, 2010 6:33 pm ((PST))<br/><br/>Thank you so much for your thoughts.  In answer, the test was given by a live SLP.  She's the same one who has seen Joshua every 6 months for similar tests for a few years, but I wouldn't say that's often enough to consider her familiar.  She will only say the word ONCE, and is very particular about it.  I'm also not allowed to repeat it.  I definitely see a problem with this, but the odd thing is that she only administers this test to children with ci's (the test is to measure the benefits of one vs bilateral).  She said that she has never encountered a child showing this pattern in results, but is not worried since he is still ahead of his hearing age.  I tend to think that he just wasn't into the "on-demand" nature of the task and he wasn't really buying into the whole thing.  On the other hand, he loves to talk, so when she was asking him to converse with her, he was more engaged in that.  I brought up that point with her, and she said that she wasn't convinced that was the issue...  Additionally, this SLP is not the first professional to find that Josh's expressive has tested ahead of his receptive.<br/><br/>I have expressed my concern to the AV therapist that he occasionally sees at his school, as well as his HI teacher, so we'll see what they say about it at our next session.  It just doesn't sound like these results are too common!<br/>Robin<br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Cindy McMurtrey" <cmcmurtrey@...> wrote:<br/>><br/>> You might want to consider receptive language and how hearing with a ci isn't the same as natural hearing. <br/>><br/>> Was it more a "hearing" test and not a test of understanding?  Were the tests administered with recorded speech versus a live voice, a known speaker versus a new speaker to the child?  Was the child allowed to hear the word more than once or allowed to check that it was heard accurately before being ask for meaning/understanding (asked what word did you hear?) <br/>><br/>> Our children do so well that some people forget that they are deaf and use technology to hear.  Electrically stimulated hearing from "computer programming" isn't the same as natural hearing, hearing aids, or bone-conductive technology.<br/>><br/>> Standardized test administered in a standardized way don't always take into consideration a disability.<br/>><br/>> Just some things to think about.  Talking versus hearing versus reading is how I've come to interpret results on Rachel.<br/>><br/>> Cindy<br/>><br/>> [Non-text portions of this message have been removed]<br/>><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (5)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>4. Anyone have any success upgading to N5 with Harvard Pilgrim?<br/>    Posted by: "Susan Poor" sue_poor@yahoo.com Sue_Poor<br/>    Date: Mon Nov 8, 2010 9:21 am ((PST))<br/><br/>Hi there,<br/><br/>I thought I would reach out to all of you to see if anyone has had success with<br/>upgrading to the new N5 with cochlear going through Harvard Pilgrim?<br/><br/><br/>We are in the process of trying to see if my medical insurance through Harvard<br/>Pilgrim will cover the upgrade.  Unfortunately, we are finding out that they<br/>will not pre-approve it instead Access Mediquip would send us the new version<br/>and then would send the paper work to Harvard for approval on it.  I am very<br/>nervous to move forward with this not knowing if Harvard will pick it up at all<br/>and then we will be stuck paying for the whole cost! <br/><br/><br/>Has anyone tried this and if so what was your outcome? <br/><br/>Thank you for any input!<br/><br/>Regards,<br/>Sue Mom of Nathan (9 yrs old bilateral cochlear implanted)<br/><br/><br/>     <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (1)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>5.1. Re: I have to share :-)<br/>    Posted by: "Tracy" tracy_boland@yahoo.com tracy_boland<br/>    Date: Mon Nov 8, 2010 11:16 am ((PST))<br/><br/>Wow Barbara. What an amazing story. Thanks for sharing. We had our own little gem last week. We attended our first parent-teacher conference for Will (now 6 y.o.). Keep in mind he is in a mainstream Kindergarten with 21 kids. His teacher had all good things to say and then she just looked at us and said: "Will is just a normal kid."<br/><br/>Can't ask for more than that.<br/>Tracy<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, Barbara Mellert <Barbara.T.Mellert@...> wrote:<br/>><br/>> I have two boys, 18 and 16, who both have bilateral cochlear implants. <br/>> They both started out with hearing aids (neither was diagnosed young -<br/>> my older son was 3-1/2), we've been a CI family for the past 5 years or<br/>> so.  And I know many of you know this already!<br/>><br/>> Thom, my 18 year old, is a senior in our town's high school.  Last night<br/>> the play he's in opened - the play is You Can't Take it With You.  Thom<br/>> had the lead!  Oh my gosh - he and all the kids did such a wonderful<br/>> job.  And I couldn't help but think back to 15 years ago almost to the<br/>> day when he got his first set of hearing aids and I wondered if I'd ever<br/>> be able to talk to him.  When they did the curtain call, he came on<br/>> stage last and I started crying!<br/>><br/>> So was it Julia talking about "normal"?  It's hard to say too much good<br/>> about the impact both boys' CIs have had on their lives.<br/>><br/>> Barbara<br/>> Mom to Thom, 18, bilateral Nucleus Freedoms and<br/>> Sam, 16, bilateral N5s<br/>><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (28)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>6a. implanted in Louisiana<br/>    Posted by: "Estelle" eeserman@yahoo.com eeserman<br/>    Date: Mon Nov 8, 2010 11:21 am ((PST))<br/><br/>If anyone was implanted or their child was implanted in Louisiana at either Ochsner's or at Children's can you please let me know which one you choose and why.  And how was your experience?<br/><br/>Thanks again<br/><br/>Estelle<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (5)<br/>________________________________________________________________________<br/>6b. Re: implanted in Louisiana<br/>    Posted by: "Estelle" eeserman@yahoo.com eeserman<br/>    Date: Mon Nov 8, 2010 11:22 am ((PST))<br/><br/>please email me thanks<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Estelle" <eeserman@...> wrote:<br/>><br/>> If anyone was implanted or their child was implanted in Louisiana at either Ochsner's or at Children's can you please let me know which one you choose and why.  And how was your experience?<br/>><br/>> Thanks again<br/>><br/>> Estelle<br/>><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (5)<br/>________________________________________________________________________<br/>6c. Re: implanted in Louisiana<br/>    Posted by: "Richelle" reelovescatz@yahoo.com reelovescatz<br/>    Date: Mon Nov 8, 2010 11:55 am ((PST))<br/><br/>Estelle,<br/><br/>My daughter currently is a patient at Ochsner's in New Orleans. She is seen by Dr. Eustice.  He is great and so is his staff.  She was born with bilateral cataracts and he removed them at 6 and 8 weeks of age.  We're using Silsoft lenses now.<br/><br/>She is 19 months old, now eligible for the permanent lens, but we are going to wait as long as we can. <br/><br/>I've never dealt with Children's Hospital, so I can't say anything about them.<br/><br/>Richelle<br/><br/>--- On Mon, 11/8/10, Estelle <eeserman@yahoo.com> wrote:<br/><br/>From: Estelle <eeserman@yahoo.com><br/>Subject: [cicircle] Re: implanted in Louisiana<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Monday, November 8, 2010, 1:22 PM<br/><br/><br/><br/><br/><br/><br/><br/> <br/><br/><br/><br/> <br/><br/><br/>   <br/>     <br/>     <br/>      please email me thanks<br/><br/><br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Estelle" <eeserman@...> wrote:<br/><br/>><br/><br/>> If anyone was implanted or their child was implanted in Louisiana at either Ochsner's or at Children's can you please let me know which one you choose and why.  And how was your experience?<br/><br/>><br/><br/>> Thanks again<br/><br/>><br/><br/>> Estelle<br/><br/>><br/><br/><br/><br/><br/><br/>   <br/>     <br/><br/>   <br/>   <br/><br/><br/><br/><br/><br/><br/> <br/><br/><br/><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (5)<br/>________________________________________________________________________<br/>6d. Re: implanted in Louisiana<br/>    Posted by: "Richelle" reelovescatz@yahoo.com reelovescatz<br/>    Date: Mon Nov 8, 2010 12:25 pm ((PST))<br/><br/>Sorry, I responded with the wrong info.  I am on two different sites about my daughter.<br/><br/>What I meant to send was, yes, my daughter was implanted by Dr. Maloney at Ochsner's in New Orleans. She was implanted at one year and she's now 19 months.  The staff is great.<br/><br/>Richelle<br/><br/>--- On Mon, 11/8/10, Estelle <eeserman@yahoo.com> wrote:<br/><br/>From: Estelle <eeserman@yahoo.com><br/>Subject: [cicircle] Re: implanted in Louisiana<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Monday, November 8, 2010, 1:22 PM<br/><br/><br/><br/><br/><br/><br/><br/> <br/><br/><br/><br/> <br/><br/><br/>   <br/>     <br/>     <br/>      please email me thanks<br/><br/><br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Estelle" <eeserman@...> wrote:<br/><br/>><br/><br/>> If anyone was implanted or their child was implanted in Louisiana at either Ochsner's or at Children's can you please let me know which one you choose and why.  And how was your experience?<br/><br/>><br/><br/>> Thanks again<br/><br/>><br/><br/>> Estelle<br/><br/>><br/><br/><br/><br/><br/><br/>   <br/>     <br/><br/>   <br/>   <br/><br/><br/><br/><br/><br/><br/> <br/><br/><br/><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (5)<br/>________________________________________________________________________<br/>6e. Re: implanted in Louisiana<br/>    Posted by: "Mikki" mikki.spence@yahoo.com mikki.spence<br/>    Date: Mon Nov 8, 2010 4:44 pm ((PST))<br/><br/>Both of my children were implanted at Ochsner by Dr. Molony.  I did not look into Childrens Hospital. We have had a total of three successful impants by dr. Molony.  My daughter was bilaterally implanted and my son has one implant. The audiologist have been great to my children and I. If you have any questions please ask!!  I will gladly share.<br/><br/>Sent from Mikki's iPhone.<br/><br/>On Nov 8, 2010, at 1:21 PM, "Estelle" <eeserman@yahoo.com> wrote:<br/><br/>> If anyone was implanted or their child was implanted in Louisiana at either Ochsner's or at Children's can you please let me know which one you choose and why. And how was your experience?<br/>><br/>> Thanks again<br/>><br/>> Estelle<br/>><br/>><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (5)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>7. Rejecting Cochlear Implant Question<br/>    Posted by: "Chris Klotzbach" dennyklotz@gmail.com tropics215<br/>    Date: Mon Nov 8, 2010 11:24 am ((PST))<br/><br/>November 8, 2010<br/><br/>1a. Rejecting Cochlear Implant Question<br/><br/>There is definitely a problem if the child is not wanting his CI.  You have<br/>to play detective a lot and this site is a great place to get advice.  I'd<br/>have some questions regarding how long he has had it.  Has it always been a<br/>problem or a recent behavior?  Sometimes,  it can be really overwhelming to<br/>put it on at full power first thing in the morning. You could try a waiting<br/>a bit and then introduce it starting at a lower volume and/or sensitivity.<br/>Then,  slowly increasing the level as the day proceeds (i.e. 1 hour, etc).<br/>It may take some time to develop a comfortable plan for him but it will<br/>benefit him in the long run ten-folds!   Hang in there.<br/><br/>Renee<br/><br/>Date: Saturday, November 6, 2010, 9:27 AM<br/><br/>1 a. Does anyone have any experience with a child refusing to wear their CI?<br/>My 5 year old son is refusing his implants-will not put them on at all and I<br/>would like to hear your experiences for guidance.<br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (1)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>8a. Skinits for AB Harmony<br/>    Posted by: "Kelly Scriven" kelly@quietsong.net quietsong56<br/>    Date: Mon Nov 8, 2010 11:43 am ((PST))<br/><br/>I was wondering if anyone's had any experience with the Skinit skins for<br/>the Harmony processors. Our son is going to be switching from body worn<br/>to BTE after the holidays, and I'm thinking of getting a skin to make<br/>them more fun for him - but I'm a little skeptical to how well they stay<br/>on, and how well the character ones would work versus just a pattern (he<br/>LOVES Mickey Mouse, but I'm not sure if the picture would translate onto<br/>something as small as a CI as well as it does to an ipod or whatnot).<br/><br/>Thanks!!<br/><br/>-- <br/>Kel<br/>Mom to Eric (4) and Danny (bi-CI, 2)<br/>http://quietsong.net<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (4)<br/>________________________________________________________________________<br/>8b. Re: Skinits for AB Harmony<br/>    Posted by: "D Solgat" cobbkidz@yahoo.com cobbkidz<br/>    Date: Mon Nov 8, 2010 11:55 am ((PST))<br/><br/>Ali has been wearing her Tinkerbell skinits for about 1 - 1 1/2 yrs now.  Same<br/>ones, no probs...BUT they are a one shot deal.  They really stay on securely,<br/>but I can't imagine taking them off and reusing them.  For this reason, we put<br/>the headpiece portion of the skinits on the headpiece cover and attach with a<br/>bit of wig tape to reuse the headpiece cover...when a cable goes wonky or<br/>something~  Thery really are just great~<br/> Denice Solgat<br/>mom to 11 daughters<br/>Ali, 7, Advanced Bionics Bi-Ci 11/05 & 5/06...Harmony with Fidelity 120 2/07<br/>Rachel, 20, Advanced Bionics CI 6/07...& loving it!<br/><br/><br/>Hearing Journey.com monitor~<br/>Bionic Ear Association volunteer~<br/><br/><br/><br/><br/>________________________________<br/>From: Kelly Scriven <kelly@quietsong.net><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Sent: Mon, November 8, 2010 11:43:08 AM<br/>Subject: [cicircle] Skinits for AB Harmony<br/><br/> <br/>I was wondering if anyone's had any experience with the Skinit skins for<br/>the Harmony processors. Our son is going to be switching from body worn<br/>to BTE after the holidays, and I'm thinking of getting a skin to make<br/>them more fun for him - but I'm a little skeptical to how well they stay<br/>on, and how well the character ones would work versus just a pattern (he<br/>LOVES Mickey Mouse, but I'm not sure if the picture would translate onto<br/>something as small as a CI as well as it does to an ipod or whatnot).<br/><br/>Thanks!!<br/><br/>-- <br/>Kel<br/>Mom to Eric (4) and Danny (bi-CI, 2)<br/>http://quietsong.net<br/><br/><br/><br/><br/><br/>     <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (4)<br/>________________________________________________________________________<br/>8c. Re: Skinits for AB Harmony<br/>    Posted by: "Melissa Jensen" faire_jour@yahoo.com faire_jour<br/>    Date: Mon Nov 8, 2010 12:44 pm ((PST))<br/><br/>My daughter has Skin Its on all four Harmony processors. They work great! We even pull the sticker off the headpiece when we change it out, and it still sticks great. They look great and have lasted over a year.<br/><br/>-Melissa Jensen<br/><br/>Mom to Miss Kat- 7, bilateral progressive loss severe-profound (bilaterally implanted with AB, right 11-21-08, left 8-25-10)<br/><br/>http://misskatsmom.blogspot.com/<br/><br/>--- On Mon, 11/8/10, Kelly Scriven <kelly@quietsong.net> wrote:<br/><br/><br/>From: Kelly Scriven <kelly@quietsong.net><br/>Subject: [cicircle] Skinits for AB Harmony<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Monday, November 8, 2010, 12:43 PM<br/><br/><br/> <br/><br/><br/><br/>I was wondering if anyone's had any experience with the Skinit skins for<br/>the Harmony processors. Our son is going to be switching from body worn<br/>to BTE after the holidays, and I'm thinking of getting a skin to make<br/>them more fun for him - but I'm a little skeptical to how well they stay<br/>on, and how well the character ones would work versus just a pattern (he<br/>LOVES Mickey Mouse, but I'm not sure if the picture would translate onto<br/>something as small as a CI as well as it does to an ipod or whatnot).<br/><br/>Thanks!!<br/><br/>-- <br/>Kel<br/>Mom to Eric (4) and Danny (bi-CI, 2)<br/>http://quietsong.net<br/><br/><br/><br/><br/><br/><br/><br/><br/><br/>     <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (4)<br/>________________________________________________________________________<br/>8d. Re: Skinits for AB Harmony<br/>    Posted by: "Melissa Novak" missy1dolfin1@yahoo.com missy1dolfin1<br/>    Date: Mon Nov 8, 2010 4:09 pm ((PST))<br/><br/>OMG i love skinits ... we have had the same skin it on my sons harmony's for 7<br/>months , no problems , i even had to take it off because i had a replacment<br/>processor and put it back on the new one , it's still sticky and stays , and<br/>when you do remove them there is no residue , they are wonderful , especially<br/>from protecting against scratches when the fall to the groud .<br/><br/>Melissa<br/><br/> <br/><br/><br/>________________________________<br/>From: Kelly Scriven <kelly@quietsong.net><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Sent: Mon, November 8, 2010 11:43:08 AM<br/>Subject: [cicircle] Skinits for AB Harmony<br/><br/> <br/>I was wondering if anyone's had any experience with the Skinit skins for<br/>the Harmony processors. Our son is going to be switching from body worn<br/>to BTE after the holidays, and I'm thinking of getting a skin to make<br/>them more fun for him - but I'm a little skeptical to how well they stay<br/>on, and how well the character ones would work versus just a pattern (he<br/>LOVES Mickey Mouse, but I'm not sure if the picture would translate onto<br/>something as small as a CI as well as it does to an ipod or whatnot).<br/><br/>Thanks!!<br/><br/>-- <br/>Kel<br/>Mom to Eric (4) and Danny (bi-CI, 2)<br/>http://quietsong.net<br/><br/><br/><br/><br/><br/>     <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (4)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>9a. Re: Eye exam and ERG<br/>    Posted by: "Shandra Reiswig" shandrareiswig@clearwire.net shandraleereiswig<br/>    Date: Mon Nov 8, 2010 6:28 pm ((PST))<br/><br/>Hi,<br/>Dr. Heidi Rhem at Harvard suggested we test the pou23 gene being that Brinley had an abundance of spinal fluid (she had leaks on both ears during surgery) Surgeon originally suggested Pendred Syndrome but that was negative. I guess Harvard research shows Sensorineural hearing loss, along with parylympatic gushers (cf leaks during surgery or implantation) have been directly linked to this gene. Happens mostly in boys but possible in girls. Hope that helps-<br/><br/>Shandra Reiswig<br/>http://beautifulbrinley.blogspot.com<br/><br/>Sent from my iPhone, so please excuse my concision and inevitable typos :)<br/><br/>On Nov 7, 2010, at 8:44 AM, jimjulierobbins@comcast.net wrote:<br/><br/>><br/>><br/>> Sandra what is Pou 23 testing for.....what kind of syndrome?<br/>><br/>> Julie Robbins<br/>><br/>> ----- Original Message -----<br/>> From: "Shandra Reiswig" <shandrareiswig@clearwire.net><br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>> Sent: Saturday, November 6, 2010 9:43:45 PM<br/>> Subject: Re: [cicircle] Re: Eye exam and ERG<br/>><br/>>   <br/>><br/>> Hi Melissa,<br/>><br/>> Yes! I found out my uncle (dads brother) had 2 different colored eyes. I told this to the Geneticist and I had investigated Waardenburg but he didn't give it a second thought. It wasn't until our Otochip came back highly rate (neg for many other syndromes, neg for Pou23, neg for Connexin, etc. that I demanded this test. They mentioned the highest rate for this syndrome is in Germany, and my husband just happens to be German.<br/>><br/>> Shandra Reiswig<br/>> http://beautifulbrinley.blogspot.com<br/>><br/>> Sent from my iPhone, so please excuse my concision and inevitable typos :)<br/>><br/>> On Nov 5, 2010, at 7:51 PM, "Melissa K. Chaikof" < mkchaikof@gmail.com > wrote:<br/>><br/>> > What you describe sounds like Waardenburg Syndrome. The larger than average space between the eyes, the unibrow, and the skin patch discolorations are all part of W.S. Unfortunately, not all W.S. genes have been discovered yet, and so a genetic test would not be conclusive. Do you have any white forelocks or heterochromia (2 different colored eyes) in your family?<br/>> ><br/>> > Melissa Chaikof<br/>> > Cochlear Awareness Volunteer<br/>> > Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and<br/>> > N24C 5/04 right, Adam normal hearing<br/>> > < http://www.auditoryverbalparents.com > www.auditoryverbalparents.com<br/>> > < http://www.cochlearimplantonline.com > www.cochlearimplantonline.com<br/>> ><br/>> > From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto: XXXXXXXXXXXXXXXXXXXXXXXX ] On Behalf Of Shandra Reiswig<br/>> > Sent: Friday, November 05, 2010 6:42 PM<br/>> > To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>> > Subject: Re: [cicircle] Re: Eye exam and ERG<br/>> ><br/>> > When I read your email, I noticed similarities between my daughter and yours- and yet I have no idea what fetal finger pads are. Can anyone define? We were told by the Geneticist Brin has small sinus cavities, unibrow, narrow tongue, some skin patch discolorations, larger than average space between eyes and extra small dented toe nails (among a few other things) upon examination.<br/>> ><br/>> > We are waiting to schedule our ERG.<br/>> ><br/>> > Shandra Reiswig<br/>> > http://beautifulbrinley.blogspot.com<br/>> ><br/>> > Sent from my iPhone, so please excuse my concision and inevitable typos :)<br/>> ><br/>> > On Nov 3, 2010, at 6:30 PM, "Sarah L" < smskeie@yahoo.com <mailto:smskeie%40yahoo.com> > wrote:<br/>> ><br/>> > > Kacie,<br/>> > ><br/>> > > You are the first person that I know of who even knows what fetal finger pads are. Did your geneticist give you a possible diagnosis?<br/>> > ><br/>> > > Sarah L.<br/>> > ><br/>> > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> , "kaciek14" <kacie.fyrberg@...> wrote:<br/>> > > ><br/>> > > > Hi Sarah,<br/>> > > > I would also be interested to hear any updates on your daughter. My daughter's case sounds very similiar. She was born profoundly deaf and has had gross motor delays/balance issues. She will be 2 on Nov. 20th and just started walking independently last month...very wobbly still, but finally doing it on her own. Usher Syndrome has been discussed a lot with her, and she has had lots of testing which has turned up negative so far. She is going for her 2nd implant in December and they will do an ERG at that time, so we are anxious for those results as well. She saw a geneticist last year and he mentioned fetal pads. We have not been back to see him, but once we get through the surgery, we will do that early next year. She is doing really well, so we are encouraged by her progress, so sometimes feel like we should stop searching for a cause when we are aware that we may never find one. But some days, it feels like an explanation of her situation would be nice. Anyhow, it is just always interesting to hear someone else in a similar situation. I look forward to any updates. Good luck and take care.<br/>> > > ><br/>> > > > Kacie F.<br/>> > > > Mom to Grace, 23 months, Nucleus 5 12/09 and soon-to-be 12/10<br/>> > > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> , "Sarah L" <smskeie@> wrote:<br/>> > > > ><br/>> > > > > I have questioned Waardenburg as well. She has very blue eyes and I know that can be a symptom, but blue eyes run in both my and my husbands families. Both of our fathers have blue eyes. The geneticist didn't think it was Waardenburg, but at that time we didn't know about her hypopigmented retinas. Aside from being deaf and having balance issues, she really has no other deficits. Another physical trait she has is persistent fetal finger pads. The geneticist pointed this out to us, I never really noticed it before, but she said that it can point to a few different syndromes. We will meet with her again after the results of the ERG are in. I will bring up Waardenburg again. I pretty much have myself convinced it is either Usher, Waardenburg, or a combination of both. I know that with Waardenburg only one parent has to have the gene, and with Usher, we would both have to be carriers. So much to think about.... I will post the ERG results when they come in. Thanks for the info Melissa.<br/>> > > > ><br/>> > > > > Sarah L.<br/>> > > > ><br/>> > > > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> , "Melissa K. Chaikof" <mkchaikof@> wrote:<br/>> > > > > ><br/>> > > > > > My daughter had the same thing. However, we were told it has nothing to do<br/>> > > > > > with Usher Syndrome. RP results in dark spots on the retina, not lighter<br/>> > > > > > spots. Have you looked into Waardenburg Syndrome? There is a good chance<br/>> > > > > > we have both Waardenburg and Usher, and we were told that the hypopigmented<br/>> > > > > > retinas can be part of Waardenburg Syndrome. I would be curious to learn<br/>> > > > > > your ERG results when you get them back as my daughter is the only other one<br/>> > > > > > we know with the hypopigmented retinas. Waardenburg Syndrome can include<br/>> > > > > > some of the same vestibular issues that Usher has.<br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > > Melissa Chaikof<br/>> > > > > > Cochlear Awareness Volunteer<br/>> > > > > > Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and<br/>> > > > > > N24C 5/04 right, Adam normal hearing<br/>> > > > > > < http://www.auditoryverbalparents.com > www.auditoryverbalparents.com<br/>> > > > > > < http://www.cochlearimplantonline.com > www.cochlearimplantonline.com<br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > > From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> [mailto: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ] On Behalf<br/>> > > > > > Of Sarah L<br/>> > > > > > Sent: Friday, October 29, 2010 10:57 AM<br/>> > > > > > To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> > > > > > Subject: [cicircle] Eye exam and ERG<br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > > Hi all,<br/>> > > > > ><br/>> > > > > > On Tuesday and Wednesday, we took Aliyah back to the University of Minnesota<br/>> > > > > > and had an extensive eye exam and an ERG. Of course we will not have the<br/>> > > > > > results from the ERG for a few weeks, but they did tell us that the back of<br/>> > > > > > her eyes are very light colored, lighter than normal. She is a fair skinned,<br/>> > > > > > blonde, blue eyed girl so they thought that this could be why she is so<br/>> > > > > > light pigmented in the back of her eye, but of course the ERG will tell all.<br/>> > > > > > I am just wondering if any of your kiddies with Ushers have light pigment in<br/>> > > > > > the back of the eyes? I am just really anxious for these results. We just<br/>> > > > > > want an answer. Our 7 month old is hearing so far and doesn't have any of<br/>> > > > > > the vestibular issues Aliyah has, but I would like to know if he has what<br/>> > > > > > she has and it just hasn't presented yet. Sorry, I am rambling now...<br/>> > > > > > Thanks.<br/>> > > > > ><br/>> > > > > > Sarah L. Mom to Aliyah almost 2 1/2, bilateral Freedoms; Anthony 7 months,<br/>> > > > > > hearing.<br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > ><br/>> > > > > > [Non-text portions of this message have been removed]<br/>> > > > > ><br/>> > > > ><br/>> > > ><br/>> > ><br/>> > ><br/>> ><br/>> > [Non-text portions of this message have been removed]<br/>> ><br/>> > [Non-text portions of this message have been removed]<br/>> ><br/>> ><br/>><br/>> [Non-text portions of this message have been removed]<br/>><br/>> [Non-text portions of this message have been removed]<br/>><br/>><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (20)<br/><br/><br/><br/>Under no circumstances are the comments on this list to be used for research, publication, etc., without the express consent of the person who posted. 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