job.  And I couldn't help<br/>but think back to 15 years ago almost to the <br/><br/>day when he got<br/>his first set of hearing aids and I wondered if I'd ever <br/><br/>be<br/>able to talk to him.  When they did the curtain call, he came on <br/><br/><br/>stage last and I started crying!<br/><br/>So was it Julia<br/>talking about "normal"?  It's hard to say too much good <br/><br/><br/>about the impact both boys' CIs have had on their lives.<br/><br/>Barbara<br/><br/>Mom to Thom, 18, bilateral Nucleus Freedoms and<br/><br/>Sam, 16, bilateral N5s<br/><br/>[Non-text portions of this<br/>message have been removed]<br/><br/>[Non-text portions of this message<br/>have been removed]<br/><br/>                           <style type="text/css">   ->   </style>         <br/><br/>Jodi Michelle Cutler<br/>Co-Author of RALLY CAPS<br/>www.rallycaps.net<br/>http://rallycapsdotnet.blogspot.com<br/>http://daigenitoriaigenitori.blogspot.com<br/>www.gpodhh.org<br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (27)<br/>________________________________________________________________________<br/>1.2. Re: I have to share :-)<br/>    Posted by: "mahmood.arif" arif_mahmood@yahoo.com mahmood.arif<br/>    Date: Sat Nov 6, 2010 11:34 am ((PDT))<br/><br/>Thank you for sharing, this gives hope, and motivate us.<br/><br/>-Arif<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, France Mercier <fhm@...> wrote:<br/>><br/>> Congratulations to both you and Thom.....what  a proud moment!!!<br/>>  <br/>> France M<br/>> <br/>> --- On Fri, 11/5/10, Barbara Mellert <Barbara.T.Mellert@...> wrote:<br/>> <br/>> <br/>> From: Barbara Mellert <Barbara.T.Mellert@...><br/>> Subject: [cicircle] I have to share :-)<br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>> Date: Friday, November 5, 2010, 2:18 PM<br/>> <br/>> <br/>>   <br/>> <br/>> <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/>> [Non-text portions of this message have been removed]<br/>><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (27)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>2a. Re: Positive ERG<br/>    Posted by: "Amy De Domenico" amydedomenico@yahoo.com amydedomenico<br/>    Date: Sat Nov 6, 2010 5:35 am ((PDT))<br/><br/>Sarah I'm thinking of you. Take one day at a time and know we are here for you. Glad Melissa can share experience, knowledge and hope your way. <br/><br/>Hugs,<br/><br/>Amy<br/>Sent from my iPhone <br/>www.fortheloveofava.blogspot.com<br/><br/>On Nov 5, 2010, at 9:34 PM, "Sarah L" <smskeie@yahoo.com> wrote:<br/><br/>> Thank you so much for all of the support and prayers, it is people like you who make this all easier. I am still trying to absorb it all, but in time it will get better. <br/>> <br/>> Sarah<br/>> <br/>> --- In XXXXXXXXXXXXXXXXXXXXXXXX, jimjulierobbins@... wrote:<br/>> ><br/>> > <br/>> > <br/>> > Sarah, <br/>> > <br/>> > <br/>> > <br/>> > My thoughts are with you and your family.  I know it may seem like news you cannot handle right now.....but you can!  You will!  Let the tears fall don't hold them back you need to release them, its healthy.  Your daughter is going to have a sucessful life, she will especially with you as her mom. <br/>> > <br/>> > <br/>> > <br/>> > Prayers to you.... <br/>> > <br/>> > <br/>> > <br/>> > Julie Robbins <br/>> > <br/>> > <br/>> > <br/>> > ----- Original Message ----- <br/>> > From: "Sarah L" <smskeie@...> <br/>> > To: XXXXXXXXXXXXXXXXXXXXXXXX <br/>> > Sent: Friday, November 5, 2010 2:35:22 PM <br/>> > Subject: [cicircle] Positive ERG <br/>> > <br/>> >   <br/>> > <br/>> > <br/>> > <br/>> > <br/>> > Hi, I am writing this through a heavy fall of tears, so bear with me. I got a call from the opthamologist and Aliyah's ERG shows significant abnormalities. He is going to get in contact with our geneticist so we can proceed with testing to narrow down the exact mutation, but it is for sure Usher. PLEASE HELP! I don't know where to go from here! <br/>> > <br/>> > Sarah L <br/>> > mom to Aliyah <br/>> > <br/>> > <br/>> > <br/>> > <br/>> > [Non-text portions of this message have been removed]<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 (10)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>3a. Re: Eye exam and ERG<br/>    Posted by: "annebiggi" annebiggi@libero.it annebiggi<br/>    Date: Sat Nov 6, 2010 6:03 am ((PDT))<br/><br/>Yes, it does sound like Waardenburg, tyoe 1; although how you describe the fingers and toes is new to me. Also, just wanted to point out that the parents don't necessarily have to have Waardenburg. My son has it, and we don't (nor does anyone else in our family).<br/><br/>Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Melissa K. Chaikof" <mkchaikof@...> 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/>>  <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/>>  <br/>> <br/>>  <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/>>  <br/>> <br/>>   <br/>> <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@... <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/>> <br/>> <br/>> <br/>> <br/>> [Non-text portions of this message have been removed]<br/>><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (18)<br/>________________________________________________________________________<br/>3b. Re: Eye exam and ERG<br/>    Posted by: "Debra Bellon" debra.bellon@gmail.com qiubuo<br/>    Date: Sat Nov 6, 2010 6:12 am ((PDT))<br/><br/>I also wanted to mention that the eye color issue can be deceiving. I  <br/>have a cousin who has Waardenburg and isn't deaf - his only real  <br/>"symptom" is that his eyes are bright blue even though he is half- <br/>Chinese. I think his mother has it too but no one noticed - she is  <br/>white so the blue eyes didn't stand out as much.<br/><br/>Debra<br/><br/>On Nov 6, 2010, at 2:03 PM, annebiggi wrote:<br/><br/>> Yes, it does sound like Waardenburg, tyoe 1; although how you  <br/>> describe the fingers and toes is new to me. Also, just wanted to  <br/>> point out that the parents don't necessarily have to have  <br/>> Waardenburg. My son has it, and we don't (nor does anyone else in  <br/>> our family).<br/>><br/>> Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/>><br/>> --- In XXXXXXXXXXXXXXXXXXXXXXXX, "Melissa K. Chaikof"  <br/>> <mkchaikof@...> wrote:<br/>> ><br/>> > What you describe sounds like Waardenburg Syndrome. The larger  <br/>> than average space between the eyes, the unibrow, and the skin patch  <br/>> discolorations are all part of W.S. Unfortunately, not all W.S.  <br/>> genes have been discovered yet, and so a genetic test would not be  <br/>> conclusive. Do you have any white forelocks or heterochromia (2  <br/>> different colored eyes) in your family?<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/>> ><br/>> ><br/>> ><br/>> ><br/>> > From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX]  <br/>> 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/>> ><br/>> ><br/>> ><br/>> ><br/>> ><br/>> > When I read your email, I noticed similarities between my daughter  <br/>> and yours- and yet I have no idea what fetal finger pads are. Can  <br/>> anyone define? We were told by the Geneticist Brin has small sinus  <br/>> cavities, unibrow, narrow tongue, some skin patch discolorations,  <br/>> larger than average space between eyes and extra small dented toe  <br/>> 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  <br/>> typos :)<br/>> ><br/>> > On Nov 3, 2010, at 6:30 PM, "Sarah L" <smskeie@... <mailto:smskeie%40yahoo.com <br/>> > > wrote:<br/>> ><br/>> > > Kacie,<br/>> > ><br/>> > > You are the first person that I know of who even knows what  <br/>> fetal finger pads are. Did your geneticist give you a possible  <br/>> diagnosis?<br/>> > ><br/>> > > Sarah L.<br/>> > ><br/>> > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle <br/>> %40yahoogroups.com> , "kaciek14" <kacie.fyrberg@> wrote:<br/>> > > ><br/>> > > > Hi Sarah,<br/>> > > > I would also be interested to hear any updates on your  <br/>> daughter. My daughter's case sounds very similiar. She was born  <br/>> profoundly deaf and has had gross motor delays/balance issues. She  <br/>> will be 2 on Nov. 20th and just started walking independently last  <br/>> month...very wobbly still, but finally doing it on her own. Usher  <br/>> Syndrome has been discussed a lot with her, and she has had lots of  <br/>> testing which has turned up negative so far. She is going for her  <br/>> 2nd implant in December and they will do an ERG at that time, so we  <br/>> are anxious for those results as well. She saw a geneticist last  <br/>> year and he mentioned fetal pads. We have not been back to see him,  <br/>> but once we get through the surgery, we will do that early next  <br/>> year. She is doing really well, so we are encouraged by her  <br/>> progress, so sometimes feel like we should stop searching for a  <br/>> cause when we are aware that we may never find one. But some days,  <br/>> it feels like an explanation of her situation would be nice. Anyhow,  <br/>> it is just always interesting to hear someone else in a similar  <br/>> 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 <br/>> > , "Sarah L" <smskeie@> wrote:<br/>> > > > ><br/>> > > > > I have questioned Waardenburg as well. She has very blue  <br/>> eyes and I know that can be a symptom, but blue eyes run in both my  <br/>> and my husbands families. Both of our fathers have blue eyes. The  <br/>> geneticist didn't think it was Waardenburg, but at that time we  <br/>> didn't know about her hypopigmented retinas. Aside from being deaf  <br/>> and having balance issues, she really has no other deficits. Another  <br/>> physical trait she has is persistent fetal finger pads. The  <br/>> geneticist pointed this out to us, I never really noticed it before,  <br/>> but she said that it can point to a few different syndromes. We will  <br/>> meet with her again after the results of the ERG are in. I will  <br/>> bring up Waardenburg again. I pretty much have myself convinced it  <br/>> is either Usher, Waardenburg, or a combination of both. I know that  <br/>> with Waardenburg only one parent has to have the gene, and with  <br/>> Usher, we would both have to be carriers. So much to think about....  <br/>> I will post the ERG results when they come in. Thanks for the info  <br/>> Melissa.<br/>> > > > ><br/>> > > > > Sarah L.<br/>> > > > ><br/>> > > > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com <br/>> > , "Melissa K. Chaikof" <mkchaikof@> wrote:<br/>> > > > > ><br/>> > > > > > My daughter had the same thing. However, we were told it  <br/>> has nothing to do<br/>> > > > > > with Usher Syndrome. RP results in dark spots on the  <br/>> retina, not lighter<br/>> > > > > > spots. Have you looked into Waardenburg Syndrome? There is  <br/>> a good chance<br/>> > > > > > we have both Waardenburg and Usher, and we were told that  <br/>> the hypopigmented<br/>> > > > > > retinas can be part of Waardenburg Syndrome. I would be  <br/>> curious to learn<br/>> > > > > > your ERG results when you get them back as my daughter is  <br/>> the only other one<br/>> > > > > > we know with the hypopigmented retinas. Waardenburg  <br/>> 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  <br/>> 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 <br/>> > [mailto:XXXXXXXXXXXXXXXXXXXXXXXX<mailto:cicircle <br/>> %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/>> ><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  <br/>> University of Minnesota<br/>> > > > > > and had an extensive eye exam and an ERG. Of course we  <br/>> will not have the<br/>> > > > > > results from the ERG for a few weeks, but they did tell us  <br/>> that the back of<br/>> > > > > > her eyes are very light colored, lighter than normal. She  <br/>> is a fair skinned,<br/>> > > > > > blonde, blue eyed girl so they thought that this could be  <br/>> why she is so<br/>> > > > > > light pigmented in the back of her eye, but of course the  <br/>> ERG will tell all.<br/>> > > > > > I am just wondering if any of your kiddies with Ushers  <br/>> have light pigment in<br/>> > > > > > the back of the eyes? I am just really anxious for these  <br/>> results. We just<br/>> > > > > > want an answer. Our 7 month old is hearing so far and  <br/>> doesn't have any of<br/>> > > > > > the vestibular issues Aliyah has, but I would like to know  <br/>> if he has what<br/>> > > > > > she has and it just hasn't presented yet. Sorry, I am  <br/>> rambling now...<br/>> > > > > > Thanks.<br/>> > > > > ><br/>> > > > > > Sarah L. Mom to Aliyah almost 2 1/2, bilateral Freedoms;  <br/>> 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/>> ><br/>> ><br/>> ><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 (18)<br/>________________________________________________________________________<br/>3c. Re: Eye exam and ERG<br/>    Posted by: "Melissa K. Chaikof" mkchaikof@gmail.com mkchaikof<br/>    Date: Sat Nov 6, 2010 6:20 am ((PDT))<br/><br/>Waardenburg is a dominant gene, and so one of the parents has to have it.<br/>However, it is one of those genes that can be expressed to varying degrees,<br/>from not at all to partially with minor traits to deafness.  The theory is<br/>that there are other factors that come into play, perhaps modifier genes as<br/>with Usher Syndrome.  Recent research shows that the severity of the RP with<br/>Usher is related to modifier genes, which would explain why two people with<br/>the same mutation don't have exactly the same course of RP progression.<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:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>Of annebiggi<br/>Sent: Saturday, November 06, 2010 9:04 AM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: [cicircle] Re: Eye exam and ERG<br/><br/><br/><br/>  <br/><br/>Yes, it does sound like Waardenburg, tyoe 1; although how you describe the<br/>fingers and toes is new to me. Also, just wanted to point out that the<br/>parents don't necessarily have to have Waardenburg. My son has it, and we<br/>don't (nor does anyone else in our family).<br/><br/>Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ,<br/>"Melissa K. Chaikof" <mkchaikof@...> wrote:<br/>><br/>> What you describe sounds like Waardenburg Syndrome. The larger than<br/>average space between the eyes, the unibrow, and the skin patch<br/>discolorations are all part of W.S. Unfortunately, not all W.S. genes have<br/>been discovered yet, and so a genetic test would not be conclusive. Do you<br/>have any white forelocks or heterochromia (2 different colored eyes) in your<br/>family?<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/>> <br/>> <br/>> <br/>> <br/>> From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>[mailto:XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ] On<br/>Behalf Of Shandra Reiswig<br/>> Sent: Friday, November 05, 2010 6:42 PM<br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> <br/>> Subject: Re: [cicircle] Re: Eye exam and ERG<br/>> <br/>> <br/>> <br/>> <br/>> <br/>> <br/>> When I read your email, I noticed similarities between my daughter and<br/>yours- and yet I have no idea what fetal finger pads are. Can anyone define?<br/>We were told by the Geneticist Brin has small sinus cavities, unibrow,<br/>narrow tongue, some skin patch discolorations, larger than average space<br/>between eyes and extra small dented toe nails (among a few other things)<br/>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@...<br/><mailto:smskeie@...%20%3cmailto:smskeie%40yahoo.com><br/><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<br/>pads are. Did your geneticist give you a possible diagnosis?<br/>> > <br/>> > Sarah L.<br/>> > <br/>> > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><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<br/>daughter's case sounds very similiar. She was born profoundly deaf and has<br/>had gross motor delays/balance issues. She will be 2 on Nov. 20th and just<br/>started walking independently last month...very wobbly still, but finally<br/>doing it on her own. Usher Syndrome has been discussed a lot with her, and<br/>she has had lots of testing which has turned up negative so far. She is<br/>going for her 2nd implant in December and they will do an ERG at that time,<br/>so we are anxious for those results as well. She saw a geneticist last year<br/>and he mentioned fetal pads. We have not been back to see him, but once we<br/>get through the surgery, we will do that early next year. She is doing<br/>really well, so we are encouraged by her progress, so sometimes feel like we<br/>should stop searching for a cause when we are aware that we may never find<br/>one. But some days, it feels like an explanation of her situation would be<br/>nice. Anyhow, it is just always interesting to hear someone else in a<br/>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><br/><mailto:cicircle%40yahoogroups.com> , "Sarah L" <smskeie@> wrote:<br/>> > > ><br/>> > > > I have questioned Waardenburg as well. She has very blue eyes and I<br/>know that can be a symptom, but blue eyes run in both my and my husbands<br/>families. Both of our fathers have blue eyes. The geneticist didn't think it<br/>was Waardenburg, but at that time we didn't know about her hypopigmented<br/>retinas. Aside from being deaf and having balance issues, she really has no<br/>other deficits. Another physical trait she has is persistent fetal finger<br/>pads. The geneticist pointed this out to us, I never really noticed it<br/>before, but she said that it can point to a few different syndromes. We will<br/>meet with her again after the results of the ERG are in. I will bring up<br/>Waardenburg again. I pretty much have myself convinced it is either Usher,<br/>Waardenburg, or a combination of both. I know that with Waardenburg only one<br/>parent has to have the gene, and with Usher, we would both have to be<br/>carriers. So much to think about.... I will post the ERG results when they<br/>come in. Thanks for the info Melissa.<br/>> > > > <br/>> > > > Sarah L.<br/>> > > > <br/>> > > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><mailto:cicircle%40yahoogroups.com> , "Melissa K. Chaikof" <mkchaikof@><br/>wrote:<br/>> > > > ><br/>> > > > > My daughter had the same thing. However, we were told it has<br/>nothing to do<br/>> > > > > with Usher Syndrome. RP results in dark spots on the retina, not<br/>lighter<br/>> > > > > spots. Have you looked into Waardenburg Syndrome? There is a good<br/>chance<br/>> > > > > we have both Waardenburg and Usher, and we were told that the<br/>hypopigmented<br/>> > > > > retinas can be part of Waardenburg Syndrome. I would be curious to<br/>learn<br/>> > > > > your ERG results when you get them back as my daughter is the only<br/>other one<br/>> > > > > we know with the hypopigmented retinas. Waardenburg Syndrome can<br/>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<br/>and<br/>> > > > > N24C 5/04 right, Adam normal hearing<br/>> > > > > <http://www.auditoryverbalparents.com><br/>www.auditoryverbalparents.com<br/>> > > > > <http://www.cochlearimplantonline.com><br/>www.cochlearimplantonline.com<br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><mailto:cicircle%40yahoogroups.com> [mailto:XXXXXXXXXXXXXXXXXXXXXXXX<br/><mailto:cicircle%40yahoogroups.com>  <mailto:cicircle%40yahoogroups.com> ]<br/>On Behalf<br/>> > > > > Of Sarah L<br/>> > > > > Sent: Friday, October 29, 2010 10:57 AM<br/>> > > > > To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><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<br/>Minnesota<br/>> > > > > and had an extensive eye exam and an ERG. Of course we will not<br/>have the<br/>> > > > > results from the ERG for a few weeks, but they did tell us that<br/>the back of<br/>> > > > > her eyes are very light colored, lighter than normal. She is a<br/>fair skinned,<br/>> > > > > blonde, blue eyed girl so they thought that this could be why she<br/>is so<br/>> > > > > light pigmented in the back of her eye, but of course the ERG will<br/>tell all.<br/>> > > > > I am just wondering if any of your kiddies with Ushers have light<br/>pigment in<br/>> > > > > the back of the eyes? I am just really anxious for these results.<br/>We just<br/>> > > > > want an answer. Our 7 month old is hearing so far and doesn't have<br/>any of<br/>> > > > > the vestibular issues Aliyah has, but I would like to know if he<br/>has what<br/>> > > > > she has and it just hasn't presented yet. Sorry, I am rambling<br/>now...<br/>> > > > > Thanks.<br/>> > > > > <br/>> > > > > Sarah L. Mom to Aliyah almost 2 1/2, bilateral Freedoms; Anthony 7<br/>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/>> <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/><br/><br/><br/><br/><br/>Messages in this topic (18)<br/>________________________________________________________________________<br/>3d. Re: Eye exam and ERG<br/>    Posted by: "Melissa K. Chaikof" mkchaikof@gmail.com mkchaikof<br/>    Date: Sat Nov 6, 2010 6:20 am ((PDT))<br/><br/>As soon as I hit send, I remember reading that there is also one rare type<br/>of Waardenburg that is a recessive gene, which would also explain why<br/>neither parent has any traits.<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:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>Of annebiggi<br/>Sent: Saturday, November 06, 2010 9:04 AM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: [cicircle] Re: Eye exam and ERG<br/><br/><br/><br/>  <br/><br/>Yes, it does sound like Waardenburg, tyoe 1; although how you describe the<br/>fingers and toes is new to me. Also, just wanted to point out that the<br/>parents don't necessarily have to have Waardenburg. My son has it, and we<br/>don't (nor does anyone else in our family).<br/><br/>Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ,<br/>"Melissa K. Chaikof" <mkchaikof@...> wrote:<br/>><br/>> What you describe sounds like Waardenburg Syndrome. The larger than<br/>average space between the eyes, the unibrow, and the skin patch<br/>discolorations are all part of W.S. Unfortunately, not all W.S. genes have<br/>been discovered yet, and so a genetic test would not be conclusive. Do you<br/>have any white forelocks or heterochromia (2 different colored eyes) in your<br/>family?<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/>> <br/>> <br/>> <br/>> <br/>> From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>[mailto:XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ] On<br/>Behalf Of Shandra Reiswig<br/>> Sent: Friday, November 05, 2010 6:42 PM<br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> <br/>> Subject: Re: [cicircle] Re: Eye exam and ERG<br/>> <br/>> <br/>> <br/>> <br/>> <br/>> <br/>> When I read your email, I noticed similarities between my daughter and<br/>yours- and yet I have no idea what fetal finger pads are. Can anyone define?<br/>We were told by the Geneticist Brin has small sinus cavities, unibrow,<br/>narrow tongue, some skin patch discolorations, larger than average space<br/>between eyes and extra small dented toe nails (among a few other things)<br/>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@...<br/><mailto:smskeie@...%20%3cmailto:smskeie%40yahoo.com><br/><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<br/>pads are. Did your geneticist give you a possible diagnosis?<br/>> > <br/>> > Sarah L.<br/>> > <br/>> > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><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<br/>daughter's case sounds very similiar. She was born profoundly deaf and has<br/>had gross motor delays/balance issues. She will be 2 on Nov. 20th and just<br/>started walking independently last month...very wobbly still, but finally<br/>doing it on her own. Usher Syndrome has been discussed a lot with her, and<br/>she has had lots of testing which has turned up negative so far. She is<br/>going for her 2nd implant in December and they will do an ERG at that time,<br/>so we are anxious for those results as well. She saw a geneticist last year<br/>and he mentioned fetal pads. We have not been back to see him, but once we<br/>get through the surgery, we will do that early next year. She is doing<br/>really well, so we are encouraged by her progress, so sometimes feel like we<br/>should stop searching for a cause when we are aware that we may never find<br/>one. But some days, it feels like an explanation of her situation would be<br/>nice. Anyhow, it is just always interesting to hear someone else in a<br/>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><br/><mailto:cicircle%40yahoogroups.com> , "Sarah L" <smskeie@> wrote:<br/>> > > ><br/>> > > > I have questioned Waardenburg as well. She has very blue eyes and I<br/>know that can be a symptom, but blue eyes run in both my and my husbands<br/>families. Both of our fathers have blue eyes. The geneticist didn't think it<br/>was Waardenburg, but at that time we didn't know about her hypopigmented<br/>retinas. Aside from being deaf and having balance issues, she really has no<br/>other deficits. Another physical trait she has is persistent fetal finger<br/>pads. The geneticist pointed this out to us, I never really noticed it<br/>before, but she said that it can point to a few different syndromes. We will<br/>meet with her again after the results of the ERG are in. I will bring up<br/>Waardenburg again. I pretty much have myself convinced it is either Usher,<br/>Waardenburg, or a combination of both. I know that with Waardenburg only one<br/>parent has to have the gene, and with Usher, we would both have to be<br/>carriers. So much to think about.... I will post the ERG results when they<br/>come in. Thanks for the info Melissa.<br/>> > > > <br/>> > > > Sarah L.<br/>> > > > <br/>> > > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><mailto:cicircle%40yahoogroups.com> , "Melissa K. Chaikof" <mkchaikof@><br/>wrote:<br/>> > > > ><br/>> > > > > My daughter had the same thing. However, we were told it has<br/>nothing to do<br/>> > > > > with Usher Syndrome. RP results in dark spots on the retina, not<br/>lighter<br/>> > > > > spots. Have you looked into Waardenburg Syndrome? There is a good<br/>chance<br/>> > > > > we have both Waardenburg and Usher, and we were told that the<br/>hypopigmented<br/>> > > > > retinas can be part of Waardenburg Syndrome. I would be curious to<br/>learn<br/>> > > > > your ERG results when you get them back as my daughter is the only<br/>other one<br/>> > > > > we know with the hypopigmented retinas. Waardenburg Syndrome can<br/>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<br/>and<br/>> > > > > N24C 5/04 right, Adam normal hearing<br/>> > > > > <http://www.auditoryverbalparents.com><br/>www.auditoryverbalparents.com<br/>> > > > > <http://www.cochlearimplantonline.com><br/>www.cochlearimplantonline.com<br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > <br/>> > > > > From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><mailto:cicircle%40yahoogroups.com> [mailto:XXXXXXXXXXXXXXXXXXXXXXXX<br/><mailto:cicircle%40yahoogroups.com>  <mailto:cicircle%40yahoogroups.com> ]<br/>On Behalf<br/>> > > > > Of Sarah L<br/>> > > > > Sent: Friday, October 29, 2010 10:57 AM<br/>> > > > > To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/><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<br/>Minnesota<br/>> > > > > and had an extensive eye exam and an ERG. Of course we will not<br/>have the<br/>> > > > > results from the ERG for a few weeks, but they did tell us that<br/>the back of<br/>> > > > > her eyes are very light colored, lighter than normal. She is a<br/>fair skinned,<br/>> > > > > blonde, blue eyed girl so they thought that this could be why she<br/>is so<br/>> > > > > light pigmented in the back of her eye, but of course the ERG will<br/>tell all.<br/>> > > > > I am just wondering if any of your kiddies with Ushers have light<br/>pigment in<br/>> > > > > the back of the eyes? I am just really anxious for these results.<br/>We just<br/>> > > > > want an answer. Our 7 month old is hearing so far and doesn't have<br/>any of<br/>> > > > > the vestibular issues Aliyah has, but I would like to know if he<br/>has what<br/>> > > > > she has and it just hasn't presented yet. Sorry, I am rambling<br/>now...<br/>> > > > > Thanks.<br/>> > > > > <br/>> > > > > Sarah L. Mom to Aliyah almost 2 1/2, bilateral Freedoms; Anthony 7<br/>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/>> <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/><br/><br/><br/><br/><br/>Messages in this topic (18)<br/>________________________________________________________________________<br/>3e. Re: Eye exam and ERG<br/>    Posted by: "annebiggi" annebiggi@libero.it annebiggi<br/>    Date: Sat Nov 6, 2010 10:57 am ((PDT))<br/><br/>Sorry if this is a repeat- sent it already, but didn't see it come up!<br/><br/>Yes, that would be true for Daniele if he should have children in the future. However, the geneticist who diagnosed him as having Waardenburg, type I told us that we parents do not have the syndrome; it just happened randomly. <br/><br/>All of the characteristics you mentioned, except two (fetal finger pads, and something with the toes) are shared by Daniele. I've never heard of these last two making up type 1, and I don't know what they mean. I don't know much about Waardenburg tyoes 3 or 4, but they do involve other issues.<br/><br/>If your child does turn out to have type 1, the only serious problem is possible deafness. In our case, Dan was born with profound deafness.<br/><br/>Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/><br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Melissa K. Chaikof" <mkchaikof@...> wrote:<br/>><br/>> Waardenburg is a dominant gene, and so one of the parents has to have it.<br/>> However, it is one of those genes that can be expressed to varying degrees,<br/>> from not at all to partially with minor traits to deafness.  The theory is<br/>> that there are other factors that come into play, perhaps modifier genes as<br/>> with Usher Syndrome.  Recent research shows that the severity of the RP with<br/>> Usher is related to modifier genes, which would explain why two people with<br/>> the same mutation don't have exactly the same course of RP progression.<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:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>> Of annebiggi<br/>> Sent: Saturday, November 06, 2010 9:04 AM<br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>> Subject: [cicircle] Re: Eye exam and ERG<br/>> <br/>>  <br/>> <br/>>   <br/>> <br/>> Yes, it does sound like Waardenburg, tyoe 1; although how you describe the<br/>> fingers and toes is new to me. Also, just wanted to point out that the<br/>> parents don't necessarily have to have Waardenburg. My son has it, and we<br/>> don't (nor does anyone else in our family).<br/>> <br/>> Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/>> <br/>> --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ,<br/>> "Melissa K. Chaikof" <mkchaikof@> wrote:<br/>> ><br/>> > What you describe sounds like Waardenburg Syndrome. The larger than<br/>> average space between the eyes, the unibrow, and the skin patch<br/>> discolorations are all part of W.S. Unfortunately, not all W.S. genes have<br/>> been discovered yet, and so a genetic test would not be conclusive. Do you<br/>> have any white forelocks or heterochromia (2 different colored eyes) in your<br/>> family?<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/>> > <br/>> > <br/>> > <br/>> > <br/>> > From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> [mailto:XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ] On<br/>> Behalf Of Shandra Reiswig<br/>> > Sent: Friday, November 05, 2010 6:42 PM<br/>> > To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> <br/>> > Subject: Re: [cicircle] Re: Eye exam and ERG<br/>> > <br/>> > <br/>> > <br/>> > <br/>> > <br/>> > <br/>> > When I read your email, I noticed similarities between my daughter and<br/>> yours- and yet I have no idea what fetal finger pads are. Can anyone define?<br/>> We were told by the Geneticist Brin has small sinus cavities, unibrow,<br/>> narrow tongue, some skin patch discolorations, larger than average space<br/>> between eyes and extra small dented toe nails (among a few other things)<br/>> 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@<br/>> <mailto:smskeie@%20%3cmailto:smskeie%40yahoo.com><br/>> <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<br/>> pads are. Did your geneticist give you a possible diagnosis?<br/>> > > <br/>> > > Sarah L.<br/>> > > <br/>> > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <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<br/>> daughter's case sounds very similiar. She was born profoundly deaf and has<br/>> had gross motor delays/balance issues. She will be 2 on Nov. 20th and just<br/>> started walking independently last month...very wobbly still, but finally<br/>> doing it on her own. Usher Syndrome has been discussed a lot with her, and<br/>> she has had lots of testing which has turned up negative so far. She is<br/>> going for her 2nd implant in December and they will do an ERG at that time,<br/>> so we are anxious for those results as well. She saw a geneticist last year<br/>> and he mentioned fetal pads. We have not been back to see him, but once we<br/>> get through the surgery, we will do that early next year. She is doing<br/>> really well, so we are encouraged by her progress, so sometimes feel like we<br/>> should stop searching for a cause when we are aware that we may never find<br/>> one. But some days, it feels like an explanation of her situation would be<br/>> nice. Anyhow, it is just always interesting to hear someone else in a<br/>> 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><br/>> <mailto:cicircle%40yahoogroups.com> , "Sarah L" <smskeie@> wrote:<br/>> > > > ><br/>> > > > > I have questioned Waardenburg as well. She has very blue eyes and I<br/>> know that can be a symptom, but blue eyes run in both my and my husbands<br/>> families. Both of our fathers have blue eyes. The geneticist didn't think it<br/>> was Waardenburg, but at that time we didn't know about her hypopigmented<br/>> retinas. Aside from being deaf and having balance issues, she really has no<br/>> other deficits. Another physical trait she has is persistent fetal finger<br/>> pads. The geneticist pointed this out to us, I never really noticed it<br/>> before, but she said that it can point to a few different syndromes. We will<br/>> meet with her again after the results of the ERG are in. I will bring up<br/>> Waardenburg again. I pretty much have myself convinced it is either Usher,<br/>> Waardenburg, or a combination of both. I know that with Waardenburg only one<br/>> parent has to have the gene, and with Usher, we would both have to be<br/>> carriers. So much to think about.... I will post the ERG results when they<br/>> come in. Thanks for the info Melissa.<br/>> > > > > <br/>> > > > > Sarah L.<br/>> > > > > <br/>> > > > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <mailto:cicircle%40yahoogroups.com> , "Melissa K. Chaikof" <mkchaikof@><br/>> wrote:<br/>> > > > > ><br/>> > > > > > My daughter had the same thing. However, we were told it has<br/>> nothing to do<br/>> > > > > > with Usher Syndrome. RP results in dark spots on the retina, not<br/>> lighter<br/>> > > > > > spots. Have you looked into Waardenburg Syndrome? There is a good<br/>> chance<br/>> > > > > > we have both Waardenburg and Usher, and we were told that the<br/>> hypopigmented<br/>> > > > > > retinas can be part of Waardenburg Syndrome. I would be curious to<br/>> learn<br/>> > > > > > your ERG results when you get them back as my daughter is the only<br/>> other one<br/>> > > > > > we know with the hypopigmented retinas. Waardenburg Syndrome can<br/>> 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<br/>> and<br/>> > > > > > N24C 5/04 right, Adam normal hearing<br/>> > > > > > <http://www.auditoryverbalparents.com><br/>> www.auditoryverbalparents.com<br/>> > > > > > <http://www.cochlearimplantonline.com><br/>> www.cochlearimplantonline.com<br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <mailto:cicircle%40yahoogroups.com> [mailto:XXXXXXXXXXXXXXXXXXXXXXXX<br/>> <mailto:cicircle%40yahoogroups.com>  <mailto:cicircle%40yahoogroups.com> ]<br/>> On Behalf<br/>> > > > > > Of Sarah L<br/>> > > > > > Sent: Friday, October 29, 2010 10:57 AM<br/>> > > > > > To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <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<br/>> Minnesota<br/>> > > > > > and had an extensive eye exam and an ERG. Of course we will not<br/>> have the<br/>> > > > > > results from the ERG for a few weeks, but they did tell us that<br/>> the back of<br/>> > > > > > her eyes are very light colored, lighter than normal. She is a<br/>> fair skinned,<br/>> > > > > > blonde, blue eyed girl so they thought that this could be why she<br/>> is so<br/>> > > > > > light pigmented in the back of her eye, but of course the ERG will<br/>> tell all.<br/>> > > > > > I am just wondering if any of your kiddies with Ushers have light<br/>> pigment in<br/>> > > > > > the back of the eyes? I am just really anxious for these results.<br/>> We just<br/>> > > > > > want an answer. Our 7 month old is hearing so far and doesn't have<br/>> any of<br/>> > > > > > the vestibular issues Aliyah has, but I would like to know if he<br/>> has what<br/>> > > > > > she has and it just hasn't presented yet. Sorry, I am rambling<br/>> now...<br/>> > > > > > Thanks.<br/>> > > > > > <br/>> > > > > > Sarah L. Mom to Aliyah almost 2 1/2, bilateral Freedoms; Anthony 7<br/>> 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/>> > <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/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (18)<br/>________________________________________________________________________<br/>3f. Re: Eye exam and ERG<br/>    Posted by: "annebiggi" annebiggi@libero.it annebiggi<br/>    Date: Sat Nov 6, 2010 11:07 am ((PDT))<br/><br/>Yes, that would be true for Daniele if he should have children in the future. However, the geneticist who diagnosed him as having Waardenburg, type I told us that we parents do not have the syndrome; it just happened randomly. <br/><br/>All of the characteristics you mentioned, except two (fetal finger pads, and something with the toes) are shared by Daniele. I've never heard of these last two making up type 1, and I don't know what they mean. I don't know much about Waardenburg tyoes 3 or 4, but they do involve other issues.<br/><br/>If your child does turn out to have type 1, the only serious problem is possible deafness. In our case, Dan was born with profound deafness.<br/><br/>Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Melissa K. Chaikof" <mkchaikof@...> wrote:<br/>><br/>> Waardenburg is a dominant gene, and so one of the parents has to have it.<br/>> However, it is one of those genes that can be expressed to varying degrees,<br/>> from not at all to partially with minor traits to deafness.  The theory is<br/>> that there are other factors that come into play, perhaps modifier genes as<br/>> with Usher Syndrome.  Recent research shows that the severity of the RP with<br/>> Usher is related to modifier genes, which would explain why two people with<br/>> the same mutation don't have exactly the same course of RP progression.<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:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>> Of annebiggi<br/>> Sent: Saturday, November 06, 2010 9:04 AM<br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>> Subject: [cicircle] Re: Eye exam and ERG<br/>> <br/>>  <br/>> <br/>>   <br/>> <br/>> Yes, it does sound like Waardenburg, tyoe 1; although how you describe the<br/>> fingers and toes is new to me. Also, just wanted to point out that the<br/>> parents don't necessarily have to have Waardenburg. My son has it, and we<br/>> don't (nor does anyone else in our family).<br/>> <br/>> Anne, mom to Leo (14), Dan (8 with bilateral CI's) and Mat (5)<br/>> <br/>> --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ,<br/>> "Melissa K. Chaikof" <mkchaikof@> wrote:<br/>> ><br/>> > What you describe sounds like Waardenburg Syndrome. The larger than<br/>> average space between the eyes, the unibrow, and the skin patch<br/>> discolorations are all part of W.S. Unfortunately, not all W.S. genes have<br/>> been discovered yet, and so a genetic test would not be conclusive. Do you<br/>> have any white forelocks or heterochromia (2 different colored eyes) in your<br/>> family?<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/>> > <br/>> > <br/>> > <br/>> > <br/>> > From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> [mailto:XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> ] On<br/>> Behalf Of Shandra Reiswig<br/>> > Sent: Friday, November 05, 2010 6:42 PM<br/>> > To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com> <br/>> > Subject: Re: [cicircle] Re: Eye exam and ERG<br/>> > <br/>> > <br/>> > <br/>> > <br/>> > <br/>> > <br/>> > When I read your email, I noticed similarities between my daughter and<br/>> yours- and yet I have no idea what fetal finger pads are. Can anyone define?<br/>> We were told by the Geneticist Brin has small sinus cavities, unibrow,<br/>> narrow tongue, some skin patch discolorations, larger than average space<br/>> between eyes and extra small dented toe nails (among a few other things)<br/>> 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@<br/>> <mailto:smskeie@%20%3cmailto:smskeie%40yahoo.com><br/>> <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<br/>> pads are. Did your geneticist give you a possible diagnosis?<br/>> > > <br/>> > > Sarah L.<br/>> > > <br/>> > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <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<br/>> daughter's case sounds very similiar. She was born profoundly deaf and has<br/>> had gross motor delays/balance issues. She will be 2 on Nov. 20th and just<br/>> started walking independently last month...very wobbly still, but finally<br/>> doing it on her own. Usher Syndrome has been discussed a lot with her, and<br/>> she has had lots of testing which has turned up negative so far. She is<br/>> going for her 2nd implant in December and they will do an ERG at that time,<br/>> so we are anxious for those results as well. She saw a geneticist last year<br/>> and he mentioned fetal pads. We have not been back to see him, but once we<br/>> get through the surgery, we will do that early next year. She is doing<br/>> really well, so we are encouraged by her progress, so sometimes feel like we<br/>> should stop searching for a cause when we are aware that we may never find<br/>> one. But some days, it feels like an explanation of her situation would be<br/>> nice. Anyhow, it is just always interesting to hear someone else in a<br/>> 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><br/>> <mailto:cicircle%40yahoogroups.com> , "Sarah L" <smskeie@> wrote:<br/>> > > > ><br/>> > > > > I have questioned Waardenburg as well. She has very blue eyes and I<br/>> know that can be a symptom, but blue eyes run in both my and my husbands<br/>> families. Both of our fathers have blue eyes. The geneticist didn't think it<br/>> was Waardenburg, but at that time we didn't know about her hypopigmented<br/>> retinas. Aside from being deaf and having balance issues, she really has no<br/>> other deficits. Another physical trait she has is persistent fetal finger<br/>> pads. The geneticist pointed this out to us, I never really noticed it<br/>> before, but she said that it can point to a few different syndromes. We will<br/>> meet with her again after the results of the ERG are in. I will bring up<br/>> Waardenburg again. I pretty much have myself convinced it is either Usher,<br/>> Waardenburg, or a combination of both. I know that with Waardenburg only one<br/>> parent has to have the gene, and with Usher, we would both have to be<br/>> carriers. So much to think about.... I will post the ERG results when they<br/>> come in. Thanks for the info Melissa.<br/>> > > > > <br/>> > > > > Sarah L.<br/>> > > > > <br/>> > > > > --- In XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <mailto:cicircle%40yahoogroups.com> , "Melissa K. Chaikof" <mkchaikof@><br/>> wrote:<br/>> > > > > ><br/>> > > > > > My daughter had the same thing. However, we were told it has<br/>> nothing to do<br/>> > > > > > with Usher Syndrome. RP results in dark spots on the retina, not<br/>> lighter<br/>> > > > > > spots. Have you looked into Waardenburg Syndrome? There is a good<br/>> chance<br/>> > > > > > we have both Waardenburg and Usher, and we were told that the<br/>> hypopigmented<br/>> > > > > > retinas can be part of Waardenburg Syndrome. I would be curious to<br/>> learn<br/>> > > > > > your ERG results when you get them back as my daughter is the only<br/>> other one<br/>> > > > > > we know with the hypopigmented retinas. Waardenburg Syndrome can<br/>> 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<br/>> and<br/>> > > > > > N24C 5/04 right, Adam normal hearing<br/>> > > > > > <http://www.auditoryverbalparents.com><br/>> www.auditoryverbalparents.com<br/>> > > > > > <http://www.cochlearimplantonline.com><br/>> www.cochlearimplantonline.com<br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > <br/>> > > > > > From: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <mailto:cicircle%40yahoogroups.com> [mailto:XXXXXXXXXXXXXXXXXXXXXXXX<br/>> <mailto:cicircle%40yahoogroups.com>  <mailto:cicircle%40yahoogroups.com> ]<br/>> On Behalf<br/>> > > > > > Of Sarah L<br/>> > > > > > Sent: Friday, October 29, 2010 10:57 AM<br/>> > > > > > To: XXXXXXXXXXXXXXXXXXXXXXXX <mailto:cicircle%40yahoogroups.com><br/>> <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<br/>> Minnesota<br/>> > > > > > and had an extensive eye exam and an ERG. Of course we will not<br/>> have the<br/>> > > > > > results from the ERG for a few weeks, but they did tell us that<br/>> the back of<br/>> > > > > > her eyes are very light colored, lighter than normal. She is a<br/>> fair skinned,<br/>> > > > > > blonde, blue eyed girl so they thought that this could be why she<br/>> is so<br/>> > > > > > light pigmented in the back of her eye, but of course the ERG will<br/>> tell all.<br/>> > > > > > I am just wondering if any of your kiddies with Ushers have light<br/>> pigment in<br/>> > > > > > the back of the eyes? I am just really anxious for these results.<br/>> We just<br/>> > > > > > want an answer. Our 7 month old is hearing so far and doesn't have<br/>> any of<br/>> > > > > > the vestibular issues Aliyah has, but I would like to know if he<br/>> has what<br/>> > > > > > she has and it just hasn't presented yet. Sorry, I am rambling<br/>> now...<br/>> > > > > > Thanks.<br/>> > > > > > <br/>> > > > > > Sarah L. Mom to Aliyah almost 2 1/2, bilateral Freedoms; Anthony 7<br/>> 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/>> > <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/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (18)<br/>________________________________________________________________________<br/>3g. Re: Eye exam and ERG<br/>    Posted by: "Shandra Reiswig" shandrareiswig@clearwire.net shandraleereiswig<br/>    Date: Sat Nov 6, 2010 7:43 pm ((PDT))<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/><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/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (18)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>4a. Re: deaf family pilot<br/>    Posted by: "Kim Norton" kim_norton1@hotmail.com clumsytulip<br/>    Date: Sat Nov 6, 2010 6:34 am ((PDT))<br/><br/><br/>I love this! What a great story and perspective. There is a petition on Facebook to get the pilot picked up by a network.<br/>However, I don't see the setback for "...raising public awareness of what is possible for children born deaf today." (CI's are covered on the news and the talk shows, not many Deaf families on Oprah) The Deaf kids and the parents in the show can do anything our kiddos can do with the sole exception of speaking orally. Not everyone has the same emphasis. Value this pilot for what it is: a unique family with a unique story. You want to show the perspective of a family with deaf kids who have CI's pitch it! I'm sure it would be a hit and could show the opposite side of what deaf kids today can do.<br/><br/>KimJack, normal hearingHenry 3/10 N5<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>From: jimjulierobbins@comcast.net<br/>Date: Fri, 5 Nov 2010 19:21:27 +0000<br/>Subject: Re: [cicircle] deaf family pilot<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/>      Agreed! <br/><br/>----- Original Message ----- <br/><br/>From: "Melissa K. Chaikof" <mkchaikof@gmail.com> <br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/>Sent: Friday, November 5, 2010 2:21:07 PM <br/><br/>Subject: RE: [cicircle] deaf family pilot <br/><br/><br/><br/>  <br/><br/><br/><br/>I finally got around to watching this. I haven't read all the comments, and <br/><br/>so I'm not sure if anyone has expressed what I felt. I think that had this <br/><br/>been made into a series, it would have been a setback for raising public <br/><br/>awareness of what is possible for children born deaf today. Imagine if <br/><br/>these parents had sought CIs for their two children born deaf as a couple of <br/><br/>parents on this listerv have. It would have been a more valuable show. For <br/><br/>those who feel it is important to show the deaf culture, that would still <br/><br/>have been in there, but it also would have shown how different their kids' <br/><br/>lives could have been in that CIs would have enabled them to be part of both <br/><br/>worlds. <br/><br/><br/><br/>Melissa Chaikof <br/><br/>Cochlear Awareness Volunteer <br/><br/>Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and <br/><br/>N24C 5/04 right, Adam normal hearing <br/><br/>< http://www.auditoryverbalparents.com > www.auditoryverbalparents.com <br/><br/>< http://www.cochlearimplantonline.com > www.cochlearimplantonline.com <br/><br/><br/><br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto: XXXXXXXXXXXXXXXXXXXXXXXX ] On Behalf <br/><br/>Of dozodozo <br/><br/>Sent: Tuesday, November 02, 2010 11:48 AM <br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/>Subject: [cicircle] deaf family pilot <br/><br/><br/><br/>Hi! <br/><br/>I just read somewhere that there is a pilot for a reality show about a Deaf <br/><br/>family with hearing and deaf children and whose parents are also Deaf and <br/><br/>all of the sign (non of them uses CIs or hearing aids). I just wanted to <br/><br/>share the link: <br/><br/>http://www.youtube.com/watch?v=P-Gc85nQK8w <br/><br/>Carmen <br/><br/><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/><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 (15)<br/>________________________________________________________________________<br/>4b. Re: deaf family pilot<br/>    Posted by: "Melissa K. Chaikof" mkchaikof@gmail.com mkchaikof<br/>    Date: Sat Nov 6, 2010 7:24 am ((PDT))<br/><br/>Unfortunately, the general public's notion of deafness is still sign<br/>language and, if oral, through lipreading and deaf sounding speech.  Those<br/>of us on this listserv are well aware of any media stories on CIs, but the<br/>general public does not seek and share them as we do.  Thus, the level of<br/>awareness in the general public of the possibilities for children born deaf<br/>today is still one of too much ignorance.  There are still too many parents<br/>out there who went uninformed about the possibilities for their children<br/>because they did not have access to accurate information.  Shows like this<br/>will only serve to further this.  If one child who could have gotten an<br/>early CI and learned to hear and speak misses that opportunity because<br/>his/her parents saw a show like this and assumed that was the way it had to<br/>be, then that is one child too many.<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/>www.auditoryverbalparents.com<br/>www.cochlearimplantonline.com<br/><br/><br/><br/>-----Original Message-----<br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>Of Kim Norton<br/>Sent: Saturday, November 06, 2010 9:34 AM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: RE: [cicircle] deaf family pilot<br/><br/><br/>I love this! What a great story and perspective. There is a petition on<br/>Facebook to get the pilot picked up by a network.<br/>However, I don't see the setback for "...raising public awareness of what is<br/>possible for children born deaf today." (CI's are covered on the news and<br/>the talk shows, not many Deaf families on Oprah) The Deaf kids and the<br/>parents in the show can do anything our kiddos can do with the sole<br/>exception of speaking orally. Not everyone has the same emphasis. Value this<br/>pilot for what it is: a unique family with a unique story. You want to show<br/>the perspective of a family with deaf kids who have CI's pitch it! I'm sure<br/>it would be a hit and could show the opposite side of what deaf kids today<br/>can do.<br/><br/>KimJack, normal hearingHenry 3/10 N5<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>From: jimjulierobbins@comcast.net<br/>Date: Fri, 5 Nov 2010 19:21:27 +0000<br/>Subject: Re: [cicircle] deaf family pilot<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/>      Agreed! <br/><br/>----- Original Message ----- <br/><br/>From: "Melissa K. Chaikof" <mkchaikof@gmail.com> <br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/>Sent: Friday, November 5, 2010 2:21:07 PM <br/><br/>Subject: RE: [cicircle] deaf family pilot <br/><br/><br/><br/>  <br/><br/><br/><br/>I finally got around to watching this. I haven't read all the comments, and <br/><br/>so I'm not sure if anyone has expressed what I felt. I think that had this <br/><br/>been made into a series, it would have been a setback for raising public <br/><br/>awareness of what is possible for children born deaf today. Imagine if <br/><br/>these parents had sought CIs for their two children born deaf as a couple of<br/><br/><br/>parents on this listerv have. It would have been a more valuable show. For <br/><br/>those who feel it is important to show the deaf culture, that would still <br/><br/>have been in there, but it also would have shown how different their kids' <br/><br/>lives could have been in that CIs would have enabled them to be part of both<br/><br/><br/>worlds. <br/><br/><br/><br/>Melissa Chaikof <br/><br/>Cochlear Awareness Volunteer <br/><br/>Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and <br/><br/>N24C 5/04 right, Adam normal hearing <br/><br/>< http://www.auditoryverbalparents.com > www.auditoryverbalparents.com <br/><br/>< http://www.cochlearimplantonline.com > www.cochlearimplantonline.com <br/><br/><br/><br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto: XXXXXXXXXXXXXXXXXXXXXXXX ] On Behalf<br/><br/><br/>Of dozodozo <br/><br/>Sent: Tuesday, November 02, 2010 11:48 AM <br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/>Subject: [cicircle] deaf family pilot <br/><br/><br/><br/>Hi! <br/><br/>I just read somewhere that there is a pilot for a reality show about a Deaf <br/><br/>family with hearing and deaf children and whose parents are also Deaf and <br/><br/>all of the sign (non of them uses CIs or hearing aids). I just wanted to <br/><br/>share the link: <br/><br/>http://www.youtube.com/watch?v=P-Gc85nQK8w <br/><br/>Carmen <br/><br/><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/><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/>Under no circumstances are the comments on this list to be used for<br/>research, publication, etc., without the express consent of the person who<br/>posted. This list is not to be used for commercial purposes.  Yahoo! Groups<br/>Links<br/><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (15)<br/>________________________________________________________________________<br/>4c. Re: deaf family pilot<br/>    Posted by: "Ralph Fruguglietti" lily.dragon@verizon.net sfruguglietti2000<br/>    Date: Sat Nov 6, 2010 7:54 am ((PDT))<br/><br/>I completely agree with Kim.  We don't know what might come up on this show, if <br/>it did air.  The family may have friends with CIs or the kids may have friends <br/>with CIs. So cochlear implants may still get highlighted at some point.   I <br/>think it shows a very healthy perspective on deaf families, that would still <br/>offer hearing families with deaf babies the chance to see what normal lives <br/>these kids can lead with or without a CI.   To me, that is valuable information <br/>- to know your deaf baby is going to live a normal life.  <br/><br/>    <br/>I also liked the show because it would offer an opportunity for my child, who is <br/>fluent in ASL,  to be able to watch a TV show and fully understand it.  But more <br/>importantly to be see on TV positive role models.   By the same token, having a <br/>show with children with CIs who use oral communication would certainly be <br/>wonderful, too!!!   CIs are a miracle and give deaf children such <br/>opportunities.  Unfortunately the results are not same for all deaf children, <br/>for various reasons,   my own daughter included.   Why shouldn't my child and <br/>others who sign have this opportunity, if TV buys the pilot? It would be so <br/>valuable for them!  And by all means, I think a show with a kid with a CI would <br/>be awesome idea to pitch!!!   Where's Jodi?   Can she can come up with a script <br/>for TV????    <br/><br/>    Maybe one of you out there can answer this....   we have commercials for <br/>Vigara, for feminine products, or jock itch?    Why don't we have commercials or <br/>public service announcements for cochlear implants, if we want to educate <br/>people? Look at what pink has become for breast cancer?  The Deaf community <br/>might be resistant; but the ads could be tastefully done and in such a way as <br/>not to put down deafness... but just to say, hey, your baby is deaf, your baby <br/>can grow up and sign and live a normal life... or your baby can have a cochlear <br/>implant, grow up and speak and hear and live a normal life?  You decide.<br/>    One of the reasons why I waited to implant Lily was that every doctor,clinic <br/>and CI supporter that I encountered when we first brought her home and found out <br/>about her deafness was so rigid in their thinking, so self-righteous and CIs are <br/>the only way and negative about the deaf community, that I was turned off and <br/>wanted to learn about what kind of a life could she lead, if she didn't have a <br/>CI.   I wanted to make the best decision I could for her (and she was already <br/>two)... but to make that decision, I needed to educate myself in all the options <br/>possible for her.   It wasn't until I found a clinic and team,who laid out all <br/>her options, all the possible scenarios,  and who didn't put down one  way or <br/>another, or try to take away the little language she did have (ASL) that we <br/>agreed to a CI.   I knew at two, she had a language processing disorder so the <br/>decision was difficult but we have never looked back and are grateful for her <br/>CI.  But we are equally grateful, more so really for the fact that she has ASL <br/>as language to communicate in, because her disorder and circumstances related to <br/>her adoption have made her CI progress difficult and slow... but still so worth <br/>it.   And I am the first one to say to new parents of a deaf baby, here's some <br/>options but look into CIs, talk to other parents of CI kids, the CI is such a <br/>miracle, join this listserve to learn more ~ and by the way, whatever you <br/>decide, your kid is going to be fine.<br/>shirley<br/>    <br/><br/> <br/><br/><br/><br/>________________________________<br/>From: Kim Norton <kim_norton1@hotmail.com><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Sent: Sat, November 6, 2010 9:34:28 AM<br/>Subject: RE: [cicircle] deaf family pilot<br/><br/><br/>I love this! What a great story and perspective. There is a petition on Facebook <br/>to get the pilot picked up by a network.<br/>However, I don't see the setback for "...raising public awareness of what is <br/>possible for children born deaf today." (CI's are covered on the news and the <br/>talk shows, not many Deaf families on Oprah) The Deaf kids and the parents in <br/>the show can do anything our kiddos can do with the sole exception of speaking <br/>orally. Not everyone has the same emphasis. Value this pilot for what it is: a <br/>unique family with a unique story. You want to show the perspective of a family <br/>with deaf kids who have CI's pitch it! I'm sure it would be a hit and could show <br/>the opposite side of what deaf kids today can do.<br/><br/>KimJack, normal hearingHenry 3/10 N5<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>From: jimjulierobbins@comcast.net<br/>Date: Fri, 5 Nov 2010 19:21:27 +0000<br/>Subject: Re: [cicircle] deaf family pilot<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/>      Agreed! <br/><br/>----- Original Message ----- <br/><br/>From: "Melissa K. Chaikof" <mkchaikof@gmail.com> <br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/>Sent: Friday, November 5, 2010 2:21:07 PM <br/><br/>Subject: RE: [cicircle] deaf family pilot <br/><br/><br/><br/>  <br/><br/><br/><br/>I finally got around to watching this. I haven't read all the comments, and <br/><br/>so I'm not sure if anyone has expressed what I felt. I think that had this <br/><br/>been made into a series, it would have been a setback for raising public <br/><br/>awareness of what is possible for children born deaf today. Imagine if <br/><br/>these parents had sought CIs for their two children born deaf as a couple of <br/><br/>parents on this listerv have. It would have been a more valuable show. For <br/><br/>those who feel it is important to show the deaf culture, that would still <br/><br/>have been in there, but it also would have shown how different their kids' <br/><br/>lives could have been in that CIs would have enabled them to be part of both <br/><br/>worlds. <br/><br/><br/><br/>Melissa Chaikof <br/><br/>Cochlear Awareness Volunteer <br/><br/>Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and <br/><br/>N24C 5/04 right, Adam normal hearing <br/><br/>< http://www.auditoryverbalparents.com > www.auditoryverbalparents.com <br/><br/>< http://www.cochlearimplantonline.com > www.cochlearimplantonline.com <br/><br/><br/><br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto: XXXXXXXXXXXXXXXXXXXXXXXX ] On Behalf <br/><br/>Of dozodozo <br/><br/>Sent: Tuesday, November 02, 2010 11:48 AM <br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/>Subject: [cicircle] deaf family pilot <br/><br/><br/><br/>Hi! <br/><br/>I just read somewhere that there is a pilot for a reality show about a Deaf <br/><br/>family with hearing and deaf children and whose parents are also Deaf and <br/><br/>all of the sign (non of them uses CIs or hearing aids). I just wanted to <br/><br/>share the link: <br/><br/>http://www.youtube.com/watch?v=P-Gc85nQK8w <br/><br/>Carmen <br/><br/><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/><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/>Under no circumstances are the comments on this list to be used for research, <br/>publication, etc., without the express consent of the person who posted. This <br/>list is not to be used for commercial purposes.  Yahoo! Groups Links<br/><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (15)<br/>________________________________________________________________________<br/>4d. Re: deaf family pilot<br/>    Posted by: "Kim Norton" kim_norton1@hotmail.com clumsytulip<br/>    Date: Sat Nov 6, 2010 4:53 pm ((PDT))<br/><br/><br/>Sorry, but that argument is as frightening as the Deaf extremists argument is.<br/>When a child is born today the first people whom a family interacts with is those in the medical community. The CI is often touted as the ONLY solution for a deaf child. How many Deaf people who use ASL only are meandering around hospitals imploring parents to sign?<br/>As for the general public, again I feel the case is the opposite from your statement. For the first two years of Henry's life we signed ASL. We knew this was not the only way deaf people communicated. The vast majority of people we encountered all said "there is so much that can be done today," or "what about that thing I saw on (insert show here)?" Rarely, if at all, did we hear anything to the degree that you are suggesting. Implying that a reality television show could be a swaying factor for a family with a deaf child is absurd.<br/>I enjoy this listserv but extremism is not my cup of tea. We shied away from the ASL-only, Deaf-is-best mentality due to extremism. As helpful as this group has been I had hoped that this would be one that was without fearmongering.<br/>KimJack, normal hearingHenry, 3/10 N5<br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>From: mkchaikof@gmail.com<br/>Date: Sat, 6 Nov 2010 10:25:04 -0400<br/>Subject: RE: [cicircle] deaf family pilot<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/>      Unfortunately, the general public's notion of deafness is still sign<br/><br/>language and, if oral, through lipreading and deaf sounding speech.  Those<br/><br/>of us on this listserv are well aware of any media stories on CIs, but the<br/><br/>general public does not seek and share them as we do.  Thus, the level of<br/><br/>awareness in the general public of the possibilities for children born deaf<br/><br/>today is still one of too much ignorance.  There are still too many parents<br/><br/>out there who went uninformed about the possibilities for their children<br/><br/>because they did not have access to accurate information.  Shows like this<br/><br/>will only serve to further this.  If one child who could have gotten an<br/><br/>early CI and learned to hear and speak misses that opportunity because<br/><br/>his/her parents saw a show like this and assumed that was the way it had to<br/><br/>be, then that is one child too many.<br/><br/><br/><br/>Melissa Chaikof<br/><br/>Cochlear Awareness Volunteer<br/><br/>Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and<br/><br/>N24C 5/04 right, Adam normal hearing<br/><br/>www.auditoryverbalparents.com<br/><br/>www.cochlearimplantonline.com<br/><br/><br/><br/>-----Original Message-----<br/><br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/><br/>Of Kim Norton<br/><br/>Sent: Saturday, November 06, 2010 9:34 AM<br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/><br/>Subject: RE: [cicircle] deaf family pilot<br/><br/><br/><br/>I love this! What a great story and perspective. There is a petition on<br/><br/>Facebook to get the pilot picked up by a network.<br/><br/>However, I don't see the setback for "...raising public awareness of what is<br/><br/>possible for children born deaf today." (CI's are covered on the news and<br/><br/>the talk shows, not many Deaf families on Oprah) The Deaf kids and the<br/><br/>parents in the show can do anything our kiddos can do with the sole<br/><br/>exception of speaking orally. Not everyone has the same emphasis. Value this<br/><br/>pilot for what it is: a unique family with a unique story. You want to show<br/><br/>the perspective of a family with deaf kids who have CI's pitch it! I'm sure<br/><br/>it would be a hit and could show the opposite side of what deaf kids today<br/><br/>can do.<br/><br/><br/><br/>KimJack, normal hearingHenry 3/10 N5<br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/><br/>From: jimjulierobbins@comcast.net<br/><br/>Date: Fri, 5 Nov 2010 19:21:27 +0000<br/><br/>Subject: Re: [cicircle] deaf family pilot<br/><br/><br/><br/>Agreed! <br/><br/><br/><br/>----- Original Message ----- <br/><br/><br/><br/>From: "Melissa K. Chaikof" <mkchaikof@gmail.com> <br/><br/><br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/><br/><br/>Sent: Friday, November 5, 2010 2:21:07 PM <br/><br/><br/><br/>Subject: RE: [cicircle] deaf family pilot <br/><br/><br/><br/>I finally got around to watching this. I haven't read all the comments, and <br/><br/><br/><br/>so I'm not sure if anyone has expressed what I felt. I think that had this <br/><br/><br/><br/>been made into a series, it would have been a setback for raising public <br/><br/><br/><br/>awareness of what is possible for children born deaf today. Imagine if <br/><br/><br/><br/>these parents had sought CIs for their two children born deaf as a couple of<br/><br/><br/><br/>parents on this listerv have. It would have been a more valuable show. For <br/><br/><br/><br/>those who feel it is important to show the deaf culture, that would still <br/><br/><br/><br/>have been in there, but it also would have shown how different their kids' <br/><br/><br/><br/>lives could have been in that CIs would have enabled them to be part of both<br/><br/><br/><br/>worlds. <br/><br/><br/><br/>Melissa Chaikof <br/><br/><br/><br/>Cochlear Awareness Volunteer <br/><br/><br/><br/>Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and <br/><br/><br/><br/>N24C 5/04 right, Adam normal hearing <br/><br/><br/><br/>< http://www.auditoryverbalparents.com > www.auditoryverbalparents.com <br/><br/><br/><br/>< http://www.cochlearimplantonline.com > www.cochlearimplantonline.com <br/><br/><br/><br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto: XXXXXXXXXXXXXXXXXXXXXXXX ] On Behalf<br/><br/><br/><br/>Of dozodozo <br/><br/><br/><br/>Sent: Tuesday, November 02, 2010 11:48 AM <br/><br/><br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/><br/><br/>Subject: [cicircle] deaf family pilot <br/><br/><br/><br/>Hi! <br/><br/><br/><br/>I just read somewhere that there is a pilot for a reality show about a Deaf <br/><br/><br/><br/>family with hearing and deaf children and whose parents are also Deaf and <br/><br/><br/><br/>all of the sign (non of them uses CIs or hearing aids). I just wanted to <br/><br/><br/><br/>share the link: <br/><br/><br/><br/>http://www.youtube.com/watch?v=P-Gc85nQK8w <br/><br/><br/><br/>Carmen <br/><br/><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/><br/><br/>                          <br/><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/>------------------------------------<br/><br/><br/><br/>Under no circumstances are the comments on this list to be used for<br/><br/>research, publication, etc., without the express consent of the person who<br/><br/>posted. This list is not to be used for commercial purposes.  Yahoo! Groups<br/><br/>Links<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 (15)<br/>________________________________________________________________________<br/>4e. Re: deaf family pilot<br/>    Posted by: "Melissa K. Chaikof" mkchaikof@gmail.com mkchaikof<br/>    Date: Sat Nov 6, 2010 6:12 pm ((PDT))<br/><br/>There are over 2000 members of the cicircle.  With that large a number,<br/>there is no labeling this group as one thing or another.  We are a diverse<br/>group with parents who have espoused pure Auditory-Verbal as I have to<br/>parents who have embraced the deaf culture.  I've been on this listserv<br/>almost since its inception well over a decade ago, and methodology battles<br/>have come and gone many times.  Fortunately, they've become more of an<br/>exchange of ideas over the past few years rather than "battles."  I've been<br/>involved with deafness and CIs for over 23 years, and I have spent many<br/>years getting accurate information out to other parents about what is<br/>possible because we were so misled by the deaf culture when my daughter's<br/>deafness was first diagnosed in 1987.  If you only want to hear from those<br/>who share your viewpoint, then this may not be the place.  I am all in favor<br/>of parents' right to choose, but I am equally in favor of enabling them to<br/>make an educated decision, and this proposed reality show doesn't help with<br/>that.  <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/>www.auditoryverbalparents.com<br/>www.cochlearimplantonline.com<br/><br/><br/><br/><br/>-----Original Message-----<br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>Of Kim Norton<br/>Sent: Saturday, November 06, 2010 7:53 PM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: RE: [cicircle] deaf family pilot<br/><br/><br/>Sorry, but that argument is as frightening as the Deaf extremists argument<br/>is.<br/>When a child is born today the first people whom a family interacts with is<br/>those in the medical community. The CI is often touted as the ONLY solution<br/>for a deaf child. How many Deaf people who use ASL only are meandering<br/>around hospitals imploring parents to sign?<br/>As for the general public, again I feel the case is the opposite from your<br/>statement. For the first two years of Henry's life we signed ASL. We knew<br/>this was not the only way deaf people communicated. The vast majority of<br/>people we encountered all said "there is so much that can be done today," or<br/>"what about that thing I saw on (insert show here)?" Rarely, if at all, did<br/>we hear anything to the degree that you are suggesting. Implying that a<br/>reality television show could be a swaying factor for a family with a deaf<br/>child is absurd.<br/>I enjoy this listserv but extremism is not my cup of tea. We shied away from<br/>the ASL-only, Deaf-is-best mentality due to extremism. As helpful as this<br/>group has been I had hoped that this would be one that was without<br/>fearmongering.<br/>KimJack, normal hearingHenry, 3/10 N5<br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>From: mkchaikof@gmail.com<br/>Date: Sat, 6 Nov 2010 10:25:04 -0400<br/>Subject: RE: [cicircle] deaf family pilot<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/>      Unfortunately, the general public's notion of deafness is still sign<br/><br/>language and, if oral, through lipreading and deaf sounding speech.  Those<br/><br/>of us on this listserv are well aware of any media stories on CIs, but the<br/><br/>general public does not seek and share them as we do.  Thus, the level of<br/><br/>awareness in the general public of the possibilities for children born deaf<br/><br/>today is still one of too much ignorance.  There are still too many parents<br/><br/>out there who went uninformed about the possibilities for their children<br/><br/>because they did not have access to accurate information.  Shows like this<br/><br/>will only serve to further this.  If one child who could have gotten an<br/><br/>early CI and learned to hear and speak misses that opportunity because<br/><br/>his/her parents saw a show like this and assumed that was the way it had to<br/><br/>be, then that is one child too many.<br/><br/><br/><br/>Melissa Chaikof<br/><br/>Cochlear Awareness Volunteer<br/><br/>Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and<br/><br/>N24C 5/04 right, Adam normal hearing<br/><br/>www.auditoryverbalparents.com<br/><br/>www.cochlearimplantonline.com<br/><br/><br/><br/>-----Original Message-----<br/><br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/><br/>Of Kim Norton<br/><br/>Sent: Saturday, November 06, 2010 9:34 AM<br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/><br/>Subject: RE: [cicircle] deaf family pilot<br/><br/><br/><br/>I love this! What a great story and perspective. There is a petition on<br/><br/>Facebook to get the pilot picked up by a network.<br/><br/>However, I don't see the setback for "...raising public awareness of what is<br/><br/>possible for children born deaf today." (CI's are covered on the news and<br/><br/>the talk shows, not many Deaf families on Oprah) The Deaf kids and the<br/><br/>parents in the show can do anything our kiddos can do with the sole<br/><br/>exception of speaking orally. Not everyone has the same emphasis. Value this<br/><br/>pilot for what it is: a unique family with a unique story. You want to show<br/><br/>the perspective of a family with deaf kids who have CI's pitch it! I'm sure<br/><br/>it would be a hit and could show the opposite side of what deaf kids today<br/><br/>can do.<br/><br/><br/><br/>KimJack, normal hearingHenry 3/10 N5<br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/><br/>From: jimjulierobbins@comcast.net<br/><br/>Date: Fri, 5 Nov 2010 19:21:27 +0000<br/><br/>Subject: Re: [cicircle] deaf family pilot<br/><br/><br/><br/>Agreed! <br/><br/><br/><br/>----- Original Message ----- <br/><br/><br/><br/>From: "Melissa K. Chaikof" <mkchaikof@gmail.com> <br/><br/><br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/><br/><br/>Sent: Friday, November 5, 2010 2:21:07 PM <br/><br/><br/><br/>Subject: RE: [cicircle] deaf family pilot <br/><br/><br/><br/>I finally got around to watching this. I haven't read all the comments, and <br/><br/><br/><br/>so I'm not sure if anyone has expressed what I felt. I think that had this <br/><br/><br/><br/>been made into a series, it would have been a setback for raising public <br/><br/><br/><br/>awareness of what is possible for children born deaf today. Imagine if <br/><br/><br/><br/>these parents had sought CIs for their two children born deaf as a couple of<br/><br/><br/><br/>parents on this listerv have. It would have been a more valuable show. For <br/><br/><br/><br/>those who feel it is important to show the deaf culture, that would still <br/><br/><br/><br/>have been in there, but it also would have shown how different their kids' <br/><br/><br/><br/>lives could have been in that CIs would have enabled them to be part of both<br/><br/><br/><br/>worlds. <br/><br/><br/><br/>Melissa Chaikof <br/><br/><br/><br/>Cochlear Awareness Volunteer <br/><br/><br/><br/>Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and <br/><br/><br/><br/>N24C 5/04 right, Adam normal hearing <br/><br/><br/><br/>< http://www.auditoryverbalparents.com > www.auditoryverbalparents.com <br/><br/><br/><br/>< http://www.cochlearimplantonline.com > www.cochlearimplantonline.com <br/><br/><br/><br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto: XXXXXXXXXXXXXXXXXXXXXXXX ] On Behalf<br/><br/><br/><br/>Of dozodozo <br/><br/><br/><br/>Sent: Tuesday, November 02, 2010 11:48 AM <br/><br/><br/><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/><br/><br/><br/>Subject: [cicircle] deaf family pilot <br/><br/><br/><br/>Hi! <br/><br/><br/><br/>I just read somewhere that there is a pilot for a reality show about a Deaf <br/><br/><br/><br/>family with hearing and deaf children and whose parents are also Deaf and <br/><br/><br/><br/>all of the sign (non of them uses CIs or hearing aids). I just wanted to <br/><br/><br/><br/>share the link: <br/><br/><br/><br/>http://www.youtube.com/watch?v=P-Gc85nQK8w <br/><br/><br/><br/>Carmen <br/><br/><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/><br/><br/>                          <br/><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/>------------------------------------<br/><br/><br/><br/>Under no circumstances are the comments on this list to be used for<br/><br/>research, publication, etc., without the express consent of the person who<br/><br/>posted. This list is not to be used for commercial purposes.  Yahoo! Groups<br/><br/>Links<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/>Under no circumstances are the comments on this list to be used for<br/>research, publication, etc., without the express consent of the person who<br/>posted. This list is not to be used for commercial purposes.  Yahoo! Groups<br/>Links<br/><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (15)<br/>________________________________________________________________________<br/>4f. Re: deaf family pilot<br/>    Posted by: "Debra Bellon" debra.bellon@gmail.com qiubuo<br/>    Date: Sun Nov 7, 2010 1:28 am ((PST))<br/><br/>I have to say I feel the discussions and atmosphere on this listserv  <br/>are great! I live in France and joined a French forum for children  <br/>with CIs, and it's impossible to have a discussion about anything  <br/>unless it's the mainstream techniques (here in France, cued speech and  <br/>signed French). A few auditory-verbal families joined and were  <br/>basically pushed off the list by people telling them they were  <br/>mistreating their children and not accepting their deafness. I haven't  <br/>been on here long but I feel comfortable discussing ASL, auditory- <br/>verbal, etc. and I love the diversity of the group.<br/><br/>Having said that, I really like the "My Deaf Family" pilot as it is. I  <br/>think they were chosen because they are active in the Deaf, signing  <br/>community - the parents both work at the California School for the  <br/>Deaf   and the mother was active in the Deaf President Now movement in  <br/>the 1980s. I like how the family has both deaf and hearing kids. I  <br/>understand what you're saying about not disseminating information,  <br/>Melissa, but I do think that in 2010 it's difficult to find parents in  <br/>wealthy countries who were not offered a CI, whereas I do think many  <br/>are told not to use ASL. I know of one hearing couple in France that  <br/>felt they were being bullied into the CI, and another family with an  <br/>older child that advocates for sign without the need for a CI - I saw  <br/>an interview with them where they said that they share their choice  <br/>with many families but so far no one has followed in their  <br/>footsteps. . I guess maybe you're thinking more of deaf parents rather  <br/>than hearing parents? If that's the case, then yes, I think there are  <br/>a lot of misconceptions. But I also know deaf families with deaf kids  <br/>who are not unsupportive of CIs (I was afraid to tell them my daughter  <br/>was going to get one, but they've been very supportive about it). They  <br/>just don't want it for their kids, and they think, perhaps rightly,  <br/>that it wouldn't really work for kids in their environment, which is  <br/>100% signing. They moved to my town so their kids could go to a bi-bi,  <br/>voices off, school, so I don't see them wanting to change that  <br/>environment any time soon.<br/><br/>Anyway, my perception, as the parent of a child born in 2009, is that  <br/>giving a child a cochlear implant is really the path of least  <br/>resistance. When my daughter was diagnosed as profoundly deaf, we were  <br/>immediately told that it made her a cochlear implant candidate.  <br/>Everyone has been careful to tell us that we don't have to do it, but  <br/>I've never felt that anyone actually thought we wouldn't want to. I  <br/>think that the lack of information is more in modalities...that seems  <br/>to be more random and depend on where people live. Here in France, for  <br/>instance, we were told that my daughter would always need to lipread  <br/>and some people are big advocates of cued speech. Just yesterday we  <br/>brought up auditory-verbal therapy with a local early intervention  <br/>program director and she told us "oh, we tried that and it doesn't  <br/>work." I'm 100% sure she didn't really know what I was talking about.  <br/>But I've also been told by other professionals that if my daughter  <br/>learned to sign it would hurt her ability to learn to speak, that it  <br/>wasn't possible for her to be bilingual in 2 spoken languages, etc. We  <br/>feel most of the professionals we talk to are speaking from opinion  <br/>rather than research-based evidence. And I think a lot of people are  <br/>getting that about the CI in general - but it's not usually "don't  <br/>give your child a CI," it's usually "it might not work, so why not  <br/>learn sign language too?" I'm not sure that a program including a deaf  <br/>child with a CI being raised in an ASL environment would really give  <br/>an accurate picture of the CI.<br/><br/>On another note, I just watched "Voices from El-Sayed," which is about  <br/>a child from an Israeli Arab community with a very large proportion of  <br/>deaf people who gets a cochlear implant. It's very interesting if you  <br/>get a chance to see it!<br/><br/>Debra<br/><br/><br/><br/>On Nov 7, 2010, at 2:12 AM, Melissa K. Chaikof wrote:<br/><br/>> There are over 2000 members of the cicircle. With that large a number,<br/>> there is no labeling this group as one thing or another. We are a  <br/>> diverse<br/>> group with parents who have espoused pure Auditory-Verbal as I have to<br/>> parents who have embraced the deaf culture. I've been on this listserv<br/>> almost since its inception well over a decade ago, and methodology  <br/>> battles<br/>> have come and gone many times. Fortunately, they've become more of an<br/>> exchange of ideas over the past few years rather than "battles."  <br/>> I've been<br/>> involved with deafness and CIs for over 23 years, and I have spent  <br/>> many<br/>> years getting accurate information out to other parents about what is<br/>> possible because we were so misled by the deaf culture when my  <br/>> daughter's<br/>> deafness was first diagnosed in 1987. If you only want to hear from  <br/>> those<br/>> who share your viewpoint, then this may not be the place. I am all  <br/>> in favor<br/>> of parents' right to choose, but I am equally in favor of enabling  <br/>> them to<br/>> make an educated decision, and this proposed reality show doesn't  <br/>> help with<br/>> that.<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/>> www.auditoryverbalparents.com<br/>> www.cochlearimplantonline.com<br/>><br/>> -----Original Message-----<br/>> From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On  <br/>> Behalf<br/>> Of Kim Norton<br/>> Sent: Saturday, November 06, 2010 7:53 PM<br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>> Subject: RE: [cicircle] deaf family pilot<br/>><br/>> Sorry, but that argument is as frightening as the Deaf extremists  <br/>> argument<br/>> is.<br/>> When a child is born today the first people whom a family interacts  <br/>> with is<br/>> those in the medical community. The CI is often touted as the ONLY  <br/>> solution<br/>> for a deaf child. How many Deaf people who use ASL only are meandering<br/>> around hospitals imploring parents to sign?<br/>> As for the general public, again I feel the case is the opposite  <br/>> from your<br/>> statement. For the first two years of Henry's life we signed ASL. We  <br/>> knew<br/>> this was not the only way deaf people communicated. The vast  <br/>> majority of<br/>> people we encountered all said "there is so much that can be done  <br/>> today," or<br/>> "what about that thing I saw on (insert show here)?" Rarely, if at  <br/>> all, did<br/>> we hear anything to the degree that you are suggesting. Implying  <br/>> that a<br/>> reality television show could be a swaying factor for a family with  <br/>> a deaf<br/>> child is absurd.<br/>> I enjoy this listserv but extremism is not my cup of tea. We shied  <br/>> away from<br/>> the ASL-only, Deaf-is-best mentality due to extremism. As helpful as  <br/>> this<br/>> group has been I had hoped that this would be one that was without<br/>> fearmongering.<br/>> KimJack, normal hearingHenry, 3/10 N5<br/>><br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>> From: mkchaikof@gmail.com<br/>> Date: Sat, 6 Nov 2010 10:25:04 -0400<br/>> Subject: RE: [cicircle] deaf family pilot<br/>><br/>> Unfortunately, the general public's notion of deafness is still sign<br/>><br/>> language and, if oral, through lipreading and deaf sounding speech.  <br/>> Those<br/>><br/>> of us on this listserv are well aware of any media stories on CIs,  <br/>> but the<br/>><br/>> general public does not seek and share them as we do. Thus, the  <br/>> level of<br/>><br/>> awareness in the general public of the possibilities for children  <br/>> born deaf<br/>><br/>> today is still one of too much ignorance. There are still too many  <br/>> parents<br/>><br/>> out there who went uninformed about the possibilities for their  <br/>> children<br/>><br/>> because they did not have access to accurate information. Shows like  <br/>> this<br/>><br/>> will only serve to further this. If one child who could have gotten an<br/>><br/>> early CI and learned to hear and speak misses that opportunity because<br/>><br/>> his/her parents saw a show like this and assumed that was the way it  <br/>> had to<br/>><br/>> be, then that is one child too many.<br/>><br/>> Melissa Chaikof<br/>><br/>> Cochlear Awareness Volunteer<br/>><br/>> Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and<br/>><br/>> N24C 5/04 right, Adam normal hearing<br/>><br/>> www.auditoryverbalparents.com<br/>><br/>> www.cochlearimplantonline.com<br/>><br/>> -----Original Message-----<br/>><br/>> From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On  <br/>> Behalf<br/>><br/>> Of Kim Norton<br/>><br/>> Sent: Saturday, November 06, 2010 9:34 AM<br/>><br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>><br/>> Subject: RE: [cicircle] deaf family pilot<br/>><br/>> I love this! What a great story and perspective. There is a petition  <br/>> on<br/>><br/>> Facebook to get the pilot picked up by a network.<br/>><br/>> However, I don't see the setback for "...raising public awareness of  <br/>> what is<br/>><br/>> possible for children born deaf today." (CI's are covered on the  <br/>> news and<br/>><br/>> the talk shows, not many Deaf families on Oprah) The Deaf kids and the<br/>><br/>> parents in the show can do anything our kiddos can do with the sole<br/>><br/>> exception of speaking orally. Not everyone has the same emphasis.  <br/>> Value this<br/>><br/>> pilot for what it is: a unique family with a unique story. You want  <br/>> to show<br/>><br/>> the perspective of a family with deaf kids who have CI's pitch it!  <br/>> I'm sure<br/>><br/>> it would be a hit and could show the opposite side of what deaf kids  <br/>> today<br/>><br/>> can do.<br/>><br/>> KimJack, normal hearingHenry 3/10 N5<br/>><br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>><br/>> From: jimjulierobbins@comcast.net<br/>><br/>> Date: Fri, 5 Nov 2010 19:21:27 +0000<br/>><br/>> Subject: Re: [cicircle] deaf family pilot<br/>><br/>> Agreed!<br/>><br/>> ----- Original Message -----<br/>><br/>> From: "Melissa K. Chaikof" <mkchaikof@gmail.com><br/>><br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>><br/>> Sent: Friday, November 5, 2010 2:21:07 PM<br/>><br/>> Subject: RE: [cicircle] deaf family pilot<br/>><br/>> I finally got around to watching this. I haven't read all the  <br/>> comments, and<br/>><br/>> so I'm not sure if anyone has expressed what I felt. I think that  <br/>> had this<br/>><br/>> been made into a series, it would have been a setback for raising  <br/>> public<br/>><br/>> awareness of what is possible for children born deaf today. Imagine if<br/>><br/>> these parents had sought CIs for their two children born deaf as a  <br/>> couple of<br/>><br/>> parents on this listerv have. It would have been a more valuable  <br/>> show. For<br/>><br/>> those who feel it is important to show the deaf culture, that would  <br/>> still<br/>><br/>> have been in there, but it also would have shown how different their  <br/>> kids'<br/>><br/>> lives could have been in that CIs would have enabled them to be part  <br/>> of both<br/>><br/>> worlds.<br/>><br/>> Melissa Chaikof<br/>><br/>> Cochlear Awareness Volunteer<br/>><br/>> Rachel N22 12/89 and BiCI N24C 3/04, Jessica BiCI N22 5/96 left and<br/>><br/>> N24C 5/04 right, Adam normal hearing<br/>><br/>> < http://www.auditoryverbalparents.com > www.auditoryverbalparents.com<br/>><br/>> < http://www.cochlearimplantonline.com > www.cochlearimplantonline.com<br/>><br/>> From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto: XXXXXXXXXXXXXXXXXXXXXXXX ]  <br/>> On Behalf<br/>><br/>> Of dozodozo<br/>><br/>> Sent: Tuesday, November 02, 2010 11:48 AM<br/>><br/>> To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>><br/>> Subject: [cicircle] deaf family pilot<br/>><br/>> Hi!<br/>><br/>> I just read somewhere that there is a pilot for a reality show about  <br/>> a Deaf<br/>><br/>> family with hearing and deaf children and whose parents are also  <br/>> Deaf and<br/>><br/>> all of the sign (non of them uses CIs or hearing aids). I just  <br/>> wanted to<br/>><br/>> share the link:<br/>><br/>> http://www.youtube.com/watch?v=P-Gc85nQK8w<br/>><br/>> Carmen<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/>> ------------------------------------<br/>><br/>> Under no circumstances are the comments on this list to be used for<br/>><br/>> research, publication, etc., without the express consent of the  <br/>> person who<br/>><br/>> posted. This list is not to be used for commercial purposes. Yahoo!  <br/>> Groups<br/>><br/>> Links<br/>><br/>><br/>><br/>> [Non-text portions of this message have been removed]<br/>><br/>> ------------------------------------<br/>><br/>> Under no circumstances are the comments on this list to be used for<br/>> research, publication, etc., without the express consent of the  <br/>> person who<br/>> posted. This list is not to be used for commercial purposes. Yahoo!  <br/>> Groups<br/>> Links<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 (15)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>5a. Rejection of Cochlear implant question.<br/>    Posted by: "kelly" catnerd714@yahoo.com catnerd714<br/>    Date: Sat Nov 6, 2010 8:28 am ((PDT))<br/><br/>Does anyone have any experience with a child refusing to wear their CI?  My 5 year old son is refusing his implants-will not put them on at all and I would like to hear your experiences for guidance.<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (3)<br/>________________________________________________________________________<br/>5b. Re: Rejection of Cochlear implant question.<br/>    Posted by: "berrytownky" berrytownky@yahoo.com berrytownky<br/>    Date: Sat Nov 6, 2010 9:09 pm ((PDT))<br/><br/>My son is younger than yours, and I have only 1 and half yr of experience with CIs. With limited information on your son's CIs, from what I have heard, the possible reasons include:<br/><br/>*Programs may needs to be adjusted in a mapping session.<br/>*Certain program may be too loud.<br/>*Interior part may be bothering the child.<br/>*Exterior part(head piece-the magnet) may be bothering the child. May be too tight (depending on the CI brand).<br/><br/>In a rare case, it may be that the child just don't like using the CI or is not getting enough benefits from it.<br/><br/>Daphne<br/>Joash, 3 1/2 - Med El (right ear, 4/27/09)<br/><br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "kelly" <catnerd714@...> wrote:<br/>><br/>> Does anyone have any experience with a child refusing to wear their CI?  My 5 year old son is refusing his implants-will not put them on at all and I would like to hear your experiences for guidance.<br/>><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (3)<br/>________________________________________________________________________<br/>5c. Re: Rejection of Cochlear implant question.<br/>    Posted by: "Melissa Jensen" faire_jour@yahoo.com faire_jour<br/>    Date: Sat Nov 6, 2010 11:45 pm ((PDT))<br/><br/>How long has he had it? What is his language like/ Does it seem uncomfortable for him? Is it possible that it hurts? <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 Sat, 11/6/10, kelly <catnerd714@yahoo.com> wrote:<br/><br/><br/>From: kelly <catnerd714@yahoo.com><br/>Subject: [cicircle] Rejection of Cochlear implant question.<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Saturday, November 6, 2010, 9:27 AM<br/><br/><br/>  <br/><br/><br/><br/>Does anyone have any experience with a child refusing to wear their CI? My 5 year old son is refusing his implants-will not put them on at all and I would like to hear your experiences for guidance.<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 (3)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>6. One year ago today...<br/>    Posted by: "freya_88" freya_88@yahoo.com freya_88<br/>    Date: Sat Nov 6, 2010 8:37 pm ((PDT))<br/><br/>One year ago today, my daughter, Sophie, who was born with a bilateral profound sensorineural hearing loss, heard her first sounds through her CI's.  I still can't think about this day without getting very emotional.  <br/><br/>Activation video - <br/>http://www.dropshots.com/falayah#date/2009-11-08/20:56:04<br/><br/>And video from a month ago - <br/>http://www.youtube.com/watch?v=gy7FVFQskjQ<br/><br/>In one year, with a lot of hard work, therapy and lots and lots of talking, she is now 8 months AHEAD receptively and 3 months AHEAD expressively.  She loves her "ears" as we call them.  She asks for them as soon as she wakes up in the morning and soaks everything up like a sponge.  It's a medical science miracle and I'm so thankful that this was available to her.  <br/><br/>Just wanted to share.<br/><br/>~freya.<br/><br/>{Mom to Sophie - 25 months, SNHL, bilateral N5's 10/22/09 - Activated 11/6/09 & Ethan - 6 yrs - typical hearing}<br/><br/><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (1)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>7a. what age was your child implanted?<br/>    Posted by: "M&M Braendler" mmbraendler@internode.on.net mbraendler<br/>    Date: Sat Nov 6, 2010 9:26 pm ((PDT))<br/><br/>Hi, I am just wanting to know how old your child was when they first got<br/>implanted, single implant or bilateral?  Also what testing they did before<br/>they gave you the go ahead to have them implanted?  We we're told our<br/>daughter may be implanted at 6 months by the surgeon. Now the audio said she<br/>wants to just check what Sophie's neck strength is like at 6 months, then<br/>start sound booth testing at 7mnths and a tentative implant date of May. Our<br/>son was implanted with his first at 8 months.  She's had two SSEP and both<br/>time shown at profound loss.<br/><br/><br/><br/>Michelle <br/><br/>Ethan 6 Bi-lateral CI's<br/><br/>Jaiden 4 hearing<br/><br/>Josiah 2 Bi-lateral CI's<br/><br/>Sophie 4mnths profound HA's<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 (2)<br/>________________________________________________________________________<br/>7b. Re: what age was your child implanted?<br/>    Posted by: "Naomi Campling" naomi.campling@gmail.com narmi060504<br/>    Date: Sat Nov 6, 2010 9:48 pm ((PDT))<br/><br/>my daughter was implanted bilaterally at 6 months.  She had all the usual testing (CT, MRI, ABR etc) and then behavioural testing a few weeks before surgery just to confirm the loss again.<br/><br/>Naomi<br/><br/>  ----- Original Message ----- <br/>  From: M&M Braendler <br/>  To: XXXXXXXXXXXXXXXXXXXXXXXX <br/>  Sent: Sunday, November 07, 2010 3:26 PM<br/>  Subject: [cicircle] what age was your child implanted?<br/><br/><br/>    <br/>  Hi, I am just wanting to know how old your child was when they first got<br/>  implanted, single implant or bilateral? Also what testing they did before<br/>  they gave you the go ahead to have them implanted? We we're told our<br/>  daughter may be implanted at 6 months by the surgeon. Now the audio said she<br/>  wants to just check what Sophie's neck strength is like at 6 months, then<br/>  start sound booth testing at 7mnths and a tentative implant date of May. Our<br/>  son was implanted with his first at 8 months. She's had two SSEP and both<br/>  time shown at profound loss.<br/><br/>  Michelle <br/><br/>  Ethan 6 Bi-lateral CI's<br/><br/>  Jaiden 4 hearing<br/><br/>  Josiah 2 Bi-lateral CI's<br/><br/>  Sophie 4mnths profound HA's<br/><br/>  [Non-text portions of this message have been removed]<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 (2)<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. This list is not to be used for commercial purposes.  <br/><br/>------------------------------------------------------------------------<br/>Yahoo! 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