soccrnurz1@aol.com<br/>1j. Re: I have to share :-)    <br/>    From: Melissa Novak<br/>1k. Re: I have to share :-)    <br/>    From: Julia Wilson<br/>1l. Re: I have to share :-)    <br/>    From: Nicole Hudson<br/>1m. Re: I have to share :-)    <br/>    From: berrytownky<br/><br/>2a. Re: deaf family pilot    <br/>    From: Melissa K. Chaikof<br/>2b. Re: deaf family pilot    <br/>    From: jimjulierobbins@comcast.net<br/><br/>3a. Positive ERG    <br/>    From: Sarah L<br/>3b. Re: Positive ERG    <br/>    From: Julia Wilson<br/>3c. Re: Positive ERG    <br/>    From: Melissa K. Chaikof<br/>3d. Re: Positive ERG    <br/>    From: Melissa K. Chaikof<br/>3e. Re: Positive ERG    <br/>    From: berrytownky<br/>3f. Re: Positive ERG    <br/>    From: jimjulierobbins@comcast.net<br/>3g. Re: Positive ERG    <br/>    From: surgespancho<br/>3h. Re: Positive ERG    <br/>    From: Sarah L<br/><br/>4a. Re: Eye exam and ERG    <br/>    From: Shandra Reiswig<br/>4b. Re: Eye exam and ERG    <br/>    From: jimjulierobbins@comcast.net<br/><br/><br/>Messages<br/>________________________________________________________________________<br/>1a. I have to share :-)<br/>    Posted by: "Barbara Mellert" Barbara.T.Mellert@Dartmouth.edu btmellert<br/>    Date: Fri Nov 5, 2010 7:18 am ((PDT))<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/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1b. Re: I have to share :-)<br/>    Posted by: "Julie Walkup" walkups@comcast.net juliewinmd<br/>    Date: Fri Nov 5, 2010 7:24 am ((PDT))<br/><br/>Wow!  That is wo wonderful!  You must be so proud.  : )<br/><br/>Julie<br/><br/>On Nov 5, 2010, at 10:18 AM, Barbara Mellert wrote:<br/><br/>> I have two boys, 18 and 16, who both have bilateral cochlear implants. <br/>> They both started out with hearing aids (neither was diagnosed young - <br/>> my older son was 3-1/2), we've been a CI family for the past 5 years or <br/>> so. And I know many of you know this already!<br/>> <br/>> Thom, my 18 year old, is a senior in our town's high school. Last night <br/>> the play he's in opened - the play is You Can't Take it With You. Thom <br/>> had the lead! Oh my gosh - he and all the kids did such a wonderful <br/>> job. And I couldn't help but think back to 15 years ago almost to the <br/>> day when he got his first set of hearing aids and I wondered if I'd ever <br/>> be able to talk to him. When they did the curtain call, he came on <br/>> stage last and I started crying!<br/>> <br/>> So was it Julia talking about "normal"? It's hard to say too much good <br/>> about the impact both boys' CIs have had on their lives.<br/>> <br/>> Barbara<br/>> Mom to Thom, 18, bilateral Nucleus Freedoms and<br/>> Sam, 16, bilateral N5s<br/>> <br/><br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1c. Re: I have to share :-)<br/>    Posted by: "Heather Carpenter" shehuntstoo@comcast.net shehuntstoo<br/>    Date: Fri Nov 5, 2010 7:26 am ((PDT))<br/><br/><br/><br/>big smiles :):):) <br/><br/><br/><br/>Heather <br/><br/>mom to Jesse age14 N24 8/98 <br/>----- Original Message ----- <br/>From: "Barbara Mellert" <Barbara.T.Mellert@Dartmouth.edu> <br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/>Sent: Friday, November 5, 2010 10:18:33 AM <br/>Subject: [cicircle] I have to share :-) <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/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1d. I have to share :-)<br/>    Posted by: "Rhea Grob" rhea.grob@gmail.com mistyrayne78<br/>    Date: Fri Nov 5, 2010 7:26 am ((PDT))<br/><br/>heartwarming!<br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1e. Re: I have to share :-)<br/>    Posted by: "Jim Ellis" jde1@psu.edu jimmybaud2000<br/>    Date: Fri Nov 5, 2010 7:37 am ((PDT))<br/><br/><br/>Congrats to both of you! I knew both of your kids were special soon as I met<br/>them!<br/><br/>Jim<br/><br/>-----Original Message-----<br/>From: XXXXXXXXXXXXXXXXXXXXXXXX [mailto:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>Of Barbara Mellert<br/>Sent: Friday, November 05, 2010 10:19 AM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: [cicircle] I have to share :-)<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/>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/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1f. Re: I have to share :-)<br/>    Posted by: "Amy De Domenico" amydedomenico@yahoo.com amydedomenico<br/>    Date: Fri Nov 5, 2010 7:39 am ((PDT))<br/><br/>Barb they are such inspirations, especially to those parents with young ones just starting their journey. Thanks so much for sharing you made my day!<br/><br/>Amy<br/>Mom to Ava, 28mos, bilateral N5's<br/>www.fortheloveofava.blogspot.com<br/><br/>On Nov 5, 2010, at 10:18 AM, Barbara Mellert <Barbara.T.Mellert@Dartmouth.edu> wrote:<br/><br/>> I have two boys, 18 and 16, who both have bilateral cochlear implants. <br/>> They both started out with hearing aids (neither was diagnosed young - <br/>> my older son was 3-1/2), we've been a CI family for the past 5 years or <br/>> so. And I know many of you know this already!<br/>> <br/>> Thom, my 18 year old, is a senior in our town's high school. Last night <br/>> the play he's in opened - the play is You Can't Take it With You. Thom <br/>> had the lead! Oh my gosh - he and all the kids did such a wonderful <br/>> job. And I couldn't help but think back to 15 years ago almost to the <br/>> day when he got his first set of hearing aids and I wondered if I'd ever <br/>> be able to talk to him. When they did the curtain call, he came on <br/>> stage last and I started crying!<br/>> <br/>> So was it Julia talking about "normal"? It's hard to say too much good <br/>> about the impact both boys' CIs have had on their lives.<br/>> <br/>> Barbara<br/>> Mom to Thom, 18, bilateral Nucleus Freedoms and<br/>> Sam, 16, bilateral N5s<br/>> <br/><br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1g. Re: I have to share :-)<br/>    Posted by: "D Solgat" cobbkidz@yahoo.com cobbkidz<br/>    Date: Fri Nov 5, 2010 7:51 am ((PDT))<br/><br/>And all of these stories continue to give me such hope...it is a marathon, and I <br/>am not a runner....I am a kick you in the tush mom to keep you focused...I am a <br/>drag you through it mom, I am a gonna get you through it by hook or by crook <br/>mom, but not a runner of a marathon....every single day is still such a miracle <br/>to me....gratitude can't even begin to give words to what I feel ... for us, it <br/>is the birthday parties eating spaghetti tacos with the other 2nd graders....or <br/>the brawl in the morning to wear the sparkle pink boots for the 4th day in a <br/>row....school plays seem such a lifetime away....but miracles  never cease to <br/>amaze me each and every day!<br/> Denice Solgat<br/>mom to 11 daughters<br/>Ali, 7, Advanced Bionics Bi-Ci 11/05 & 5/06...Harmony with Fidelity 120 2/07<br/>Rachel, 20, Advanced Bionics CI 6/07...& loving it! <br/><br/><br/>Hearing Journey.com monitor~<br/>Bionic Ear Association volunteer~ <br/><br/><br/><br/><br/>________________________________<br/>From: Barbara Mellert <Barbara.T.Mellert@Dartmouth.edu><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Sent: Fri, November 5, 2010 7:18:33 AM<br/>Subject: [cicircle] I have to share :-)<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/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1h. Re: I have to share :-)<br/>    Posted by: "Terry Grimard" tlgrimard@gmail.com tgrim1<br/>    Date: Fri Nov 5, 2010 8:25 am ((PDT))<br/><br/>These stories are so good to hear! My son wasn't diagnosed until he was<br/>almost 3, has been wearing hearing aids for a year, and is getting his first<br/>CI in December. Stories like this give me hope! Thanks!<br/><br/>On Fri, Nov 5, 2010 at 9:18 AM, Barbara Mellert <<br/>Barbara.T.Mellert@dartmouth.edu> wrote:<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/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1i. Re: I have to share :-)<br/>    Posted by: "soccrnurz1@aol.com" soccrnurz1@aol.com cathypen65<br/>    Date: Fri Nov 5, 2010 8:38 am ((PDT))<br/><br/>Hi Barbara,<br/><br/>Congratulations to Thom - and you. That is awesome.<br/><br/>Cathy<br/><br/><br/>In a message dated 11/5/2010 10:18:50 A.M. Eastern Daylight Time,  <br/>Barbara.T.Mellert@Dartmouth.edu writes:<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/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1j. Re: I have to share :-)<br/>    Posted by: "Melissa Novak" missy1dolfin1@yahoo.com missy1dolfin1<br/>    Date: Fri Nov 5, 2010 8:44 am ((PDT))<br/><br/>very heartwarming .... i have a two and a half year old that was just implanted <br/>and i'm thinking the same thing right now that you were thinking 15 years ago , <br/>it gives me a lot of hope for my son . <br/><br/>Melissa <br/><br/><br/><br/><br/>________________________________<br/>From: Barbara Mellert <Barbara.T.Mellert@Dartmouth.edu><br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Sent: Fri, November 5, 2010 7:18:33 AM<br/>Subject: [cicircle] I have to share :-)<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/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1k. Re: I have to share :-)<br/>    Posted by: "Julia Wilson" wilson.feit@yahoo.com wilson.feit<br/>    Date: Fri Nov 5, 2010 11:04 am ((PDT))<br/><br/>Beautiful, beautiful!!!  I saw both your sons from a distance at Sturbridge last year, but didn't get a chance to meet them -- hopefully we can rectify that someday!  They certainly are both an inspiration for us as we look forward.<br/> <br/>Julia<br/><br/>Parent of Ben (b. 10-19-07), AB CI in right ear (July 2008), aided left, www.orange-b.blogspot.com<br/><br/>--- On Fri, 11/5/10, Barbara Mellert <Barbara.T.Mellert@Dartmouth.edu> wrote:<br/><br/><br/>From: Barbara Mellert <Barbara.T.Mellert@Dartmouth.edu><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/><br/>      <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1l. Re: I have to share :-)<br/>    Posted by: "Nicole Hudson" nicolita98@yahoo.com nicolita98<br/>    Date: Fri Nov 5, 2010 3:08 pm ((PDT))<br/><br/>This is so awesome! I am sure you are very proud. Can't wait till we get to the day that could happen for us.... :)<br/>-NicoleMom to Wyatt bilateral N5 since 12/1/09 & William hearing<br/><br/>--- On Fri, 11/5/10, Barbara Mellert <Barbara.T.Mellert@Dartmouth.edu> wrote:<br/><br/>From: Barbara Mellert <Barbara.T.Mellert@Dartmouth.edu><br/>Subject: [cicircle] I have to share :-)<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Friday, November 5, 2010, 10:18 AM<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/>      I have two boys, 18 and 16, who both have bilateral cochlear implants.  <br/><br/>They both started out with hearing aids (neither was diagnosed young - <br/><br/>my older son was 3-1/2), we've been a CI family for the past 5 years or <br/><br/>so.  And I know many of you know this already!<br/><br/><br/><br/>Thom, my 18 year old, is a senior in our town's high school.  Last night <br/><br/>the play he's in opened - the play is You Can't Take it With You.  Thom <br/><br/>had the lead!  Oh my gosh - he and all the kids did such a wonderful <br/><br/>job.  And I couldn't help but think back to 15 years ago almost to the <br/><br/>day when he got his first set of hearing aids and I wondered if I'd ever <br/><br/>be able to talk to him.  When they did the curtain call, he came on <br/><br/>stage last and I started crying!<br/><br/><br/><br/>So was it Julia talking about "normal"?  It's hard to say too much good <br/><br/>about the impact both boys' CIs have had on their lives.<br/><br/><br/><br/>Barbara<br/><br/>Mom to Thom, 18, bilateral Nucleus Freedoms and<br/><br/>Sam, 16, bilateral N5s<br/><br/><br/><br/>    <br/>     <br/><br/>    <br/>    <br/><br/><br/><br/><br/><br/><br/>  <br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/><br/>      <br/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>1m. Re: I have to share :-)<br/>    Posted by: "berrytownky" berrytownky@yahoo.com berrytownky<br/>    Date: Fri Nov 5, 2010 4:08 pm ((PDT))<br/><br/><br/>Thanks for sharing! I look forward to it with my son someday in whatever he is interested in. Right now he seems to be interested in piano so I will see if someone from church would be willing to teach him when he turns 4.<br/><br/>Daphne<br/>Joash, 3 1/2 - Med El (right ear, 4/27/09)<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (23)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>2a. Re: deaf family pilot<br/>    Posted by: "Melissa K. Chaikof" mkchaikof@gmail.com mkchaikof<br/>    Date: Fri Nov 5, 2010 12:20 pm ((PDT))<br/><br/>I finally got around to watching this.  I haven't read all the comments, and<br/>so I'm not sure if anyone has expressed what I felt.  I think that had this<br/>been made into a series, it would have been a setback for raising public<br/>awareness of what is possible for children born deaf today.  Imagine if<br/>these parents had sought CIs for their two children born deaf as a couple of<br/>parents on this listerv have.  It would have been a more valuable show.  For<br/>those who feel it is important to show the deaf culture, that would still<br/>have been in there, but it also would have shown how different their kids'<br/>lives could have been in that CIs would have enabled them to be part of both<br/>worlds.<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 dozodozo<br/>Sent: Tuesday, November 02, 2010 11:48 AM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: [cicircle] deaf family pilot<br/><br/><br/><br/>  <br/><br/>Hi!<br/>I just read somewhere that there is a pilot for a reality show about a Deaf<br/>family with hearing and deaf children and whose parents are also Deaf and<br/>all of the sign (non of them uses CIs or hearing aids). I just wanted to<br/>share the link:<br/>http://www.youtube.com/watch?v=P-Gc85nQK8w<br/>Carmen<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 (9)<br/>________________________________________________________________________<br/>2b. Re: deaf family pilot<br/>    Posted by: "jimjulierobbins@comcast.net" jimjulierobbins@comcast.net jimjulierobbins<br/>    Date: Fri Nov 5, 2010 12:21 pm ((PDT))<br/><br/>Agreed! <br/>----- Original Message ----- <br/>From: "Melissa K. Chaikof" <mkchaikof@gmail.com> <br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/>Sent: Friday, November 5, 2010 2:21:07 PM <br/>Subject: RE: [cicircle] deaf family pilot <br/><br/>  <br/><br/><br/><br/><br/>I finally got around to watching this. I haven't read all the comments, and <br/>so I'm not sure if anyone has expressed what I felt. I think that had this <br/>been made into a series, it would have been a setback for raising public <br/>awareness of what is possible for children born deaf today. Imagine if <br/>these parents had sought CIs for their two children born deaf as a couple of <br/>parents on this listerv have. It would have been a more valuable show. For <br/>those who feel it is important to show the deaf culture, that would still <br/>have been in there, but it also would have shown how different their kids' <br/>lives could have been in that CIs would have enabled them to be part of both <br/>worlds. <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 <br/>Of dozodozo <br/>Sent: Tuesday, November 02, 2010 11:48 AM <br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/>Subject: [cicircle] deaf family pilot <br/><br/>Hi! <br/>I just read somewhere that there is a pilot for a reality show about a Deaf <br/>family with hearing and deaf children and whose parents are also Deaf and <br/>all of the sign (non of them uses CIs or hearing aids). I just wanted to <br/>share the link: <br/>http://www.youtube.com/watch?v=P-Gc85nQK8w <br/>Carmen <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 (9)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>3a. Positive ERG<br/>    Posted by: "Sarah L" smskeie@yahoo.com smskeie<br/>    Date: Fri Nov 5, 2010 12:35 pm ((PDT))<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/><br/><br/>Messages in this topic (8)<br/>________________________________________________________________________<br/>3b. Re: Positive ERG<br/>    Posted by: "Julia Wilson" wilson.feit@yahoo.com wilson.feit<br/>    Date: Fri Nov 5, 2010 12:48 pm ((PDT))<br/><br/>I don't have any information to help you, but just wanted to send HUGS!!!  I know this is a huge blow for you.  Melissa Chaikof has two daughters with Usher's, so she can give you information on further resources.<br/> <br/>Julia<br/><br/>Parent of Ben (b. 10-19-07), AB CI in right ear (July 2008), aided left, www.orange-b.blogspot.com<br/><br/>--- On Fri, 11/5/10, Sarah L <smskeie@yahoo.com> wrote:<br/><br/><br/>From: Sarah L <smskeie@yahoo.com><br/>Subject: [cicircle] Positive ERG<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Date: Friday, November 5, 2010, 7:35 PM<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/><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 (8)<br/>________________________________________________________________________<br/>3c. Re: Positive ERG<br/>    Posted by: "Melissa K. Chaikof" mkchaikof@gmail.com mkchaikof<br/>    Date: Fri Nov 5, 2010 12:50 pm ((PDT))<br/><br/>Sarah,<br/><br/><br/><br/>I understand exactly how you feel having been there myself a little over 4<br/>years ago.  It is more than a double whammy.  Please feel free to email me<br/>off list, and I will share my phone number with you if you want to talk on<br/>the phone as well.  Also, we now have a listserv for parents of children<br/>with Usher Syndrome who have CIs and communicate primarily through spoken<br/>language.  It's on Yahoo Groups and is at<br/>http://health.groups.yahoo.com/group/UsherParents/  I know it's hard to<br/>believe right now, but it becomes the new normal.  I think when my girls<br/>were first diagnosed I had the fear that they would lose their vision<br/>tomorrow despite the doctors telling me the RP progresses very gradually<br/>over decades and not over months as I feared.  Second, there is much<br/>promising research.  In particular, Dr. Samuel Jacobson at U. Penn is doing<br/>some very promising gene therapy that has already been very successful for<br/>some who have LCA, a severe form of RP, and he is planning to start clinical<br/>trials for Usher 1b in 2011 and intends to petition the FDA for clinical<br/>trials for Usher 1f, which is my girls' mutation, in two years.  There are<br/>also things you can do in the meantime to help slow the progression of the<br/>RP, such as vitamin A supplements, and a high fish diet.  <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 Sarah L<br/>Sent: Friday, November 05, 2010 3:35 PM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: [cicircle] Positive ERG<br/><br/><br/><br/>  <br/><br/>Hi, I am writing this through a heavy fall of tears, so bear with me. I got<br/>a call from the opthamologist and Aliyah's ERG shows significant<br/>abnormalities. He is going to get in contact with our geneticist so we can<br/>proceed with testing to narrow down the exact mutation, but it is for sure<br/>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/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (8)<br/>________________________________________________________________________<br/>3d. Re: Positive ERG<br/>    Posted by: "Melissa K. Chaikof" mkchaikof@gmail.com mkchaikof<br/>    Date: Fri Nov 5, 2010 12:54 pm ((PDT))<br/><br/>I forgot to mention that clinical trials are just beginning for valproic<br/>acid, brand name Depakote.  It's a drug that is already FDA approved and has<br/>been used for seizures for years, and so its safety is already documented.<br/>Research has found that valproic acid may stop progression of vision loss in<br/>RP.  My hope is that since it is already FDA approved for other uses,<br/>clinical trials for it for RP will move faster than average.<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 Sarah L<br/>Sent: Friday, November 05, 2010 3:35 PM<br/>To: XXXXXXXXXXXXXXXXXXXXXXXX<br/>Subject: [cicircle] Positive ERG<br/><br/><br/><br/>  <br/><br/>Hi, I am writing this through a heavy fall of tears, so bear with me. I got<br/>a call from the opthamologist and Aliyah's ERG shows significant<br/>abnormalities. He is going to get in contact with our geneticist so we can<br/>proceed with testing to narrow down the exact mutation, but it is for sure<br/>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/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (8)<br/>________________________________________________________________________<br/>3e. Re: Positive ERG<br/>    Posted by: "berrytownky" berrytownky@yahoo.com berrytownky<br/>    Date: Fri Nov 5, 2010 4:12 pm ((PDT))<br/><br/><<HUGS>> My answer would be the same as Julia's.<br/><br/>Daphne<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, Julia Wilson <wilson.feit@...> wrote:<br/>><br/>> I don't have any information to help you, but just wanted to send HUGS!!!  I know this is a huge blow for you.  Melissa Chaikof has two daughters with Usher's, so she can give you information on further resources.<br/>>  <br/>> Julia<br/>> <br/>><br/><br/><br/><br/><br/><br/><br/>Messages in this topic (8)<br/>________________________________________________________________________<br/>3f. Re: Positive ERG<br/>    Posted by: "jimjulierobbins@comcast.net" jimjulierobbins@comcast.net jimjulierobbins<br/>    Date: Fri Nov 5, 2010 5:24 pm ((PDT))<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@yahoo.com> <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/><br/>Messages in this topic (8)<br/>________________________________________________________________________<br/>3g. Re: Positive ERG<br/>    Posted by: "surgespancho" surgespancho@yahoo.com surgespancho<br/>    Date: Fri Nov 5, 2010 5:43 pm ((PDT))<br/><br/>Hi Sarah,<br/><br/>One thing I forgot to mention in my email.....UV rays speed up the progression of vision loss in Usher Syndrome, so good sunglasses & hats are a must. I get my daughter's hats at sundayafternoons.com and they are GREAT.<br/><br/>Good luck.....& feel free to email me :)<br/><br/>Andrea<br/><br/>--- In XXXXXXXXXXXXXXXXXXXXXXXX, "Sarah L" <smskeie@...> wrote:<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/><br/><br/><br/><br/>Messages in this topic (8)<br/>________________________________________________________________________<br/>3h. Re: Positive ERG<br/>    Posted by: "Sarah L" smskeie@yahoo.com smskeie<br/>    Date: Fri Nov 5, 2010 6:34 pm ((PDT))<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/><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/><br/><br/><br/>Messages in this topic (8)<br/>________________________________________________________________________<br/>________________________________________________________________________<br/>4a. Re: Eye exam and ERG<br/>    Posted by: "Shandra Reiswig" shandrareiswig@clearwire.net shandraleereiswig<br/>    Date: Fri Nov 5, 2010 3:42 pm ((PDT))<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@yahoo.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, "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, "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, "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:XXXXXXXXXXXXXXXXXXXXXXXX] On Behalf<br/>> > > > Of Sarah L<br/>> > > > Sent: Friday, October 29, 2010 10:57 AM<br/>> > > > To: XXXXXXXXXXXXXXXXXXXXXXXX<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/><br/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (9)<br/>________________________________________________________________________<br/>4b. Re: Eye exam and ERG<br/>    Posted by: "jimjulierobbins@comcast.net" jimjulierobbins@comcast.net jimjulierobbins<br/>    Date: Fri Nov 5, 2010 5:48 pm ((PDT))<br/><br/><br/><br/>I have a question for all of you.  Jack had an ERG at 9 mos old and I was told that his test was the lower range of normal and to have it retested at 3.  Our Otolarengolist told us that with the test you either have it or you dont and suggested that we not have the test again.  I have always worried about it....have you ever heard of a lower range normal ERG..... how does that work....what do you guys suggest... <br/><br/><br/><br/>Julie <br/><br/><br/>----- Original Message ----- <br/>From: "Shandra Reiswig" <shandrareiswig@clearwire.net> <br/>To: XXXXXXXXXXXXXXXXXXXXXXXX <br/>Sent: Friday, November 5, 2010 5:42:08 PM <br/>Subject: Re: [cicircle] Re: Eye exam and ERG <br/><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@yahoo.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 , "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 , "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 , "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: XXXXXXXXXXXXXXXXXXXXXXXX ] On Behalf <br/>> > > > Of Sarah L <br/>> > > > Sent: Friday, October 29, 2010 10:57 AM <br/>> > > > To: XXXXXXXXXXXXXXXXXXXXXXXX <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/>[Non-text portions of this message have been removed]<br/><br/><br/><br/><br/><br/><br/>Messages in this topic (9)<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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