Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Pushpa, We use " critter clips " to loop up over Kennedy's glasses and the hearing aid which has helped a lot to hold the aid up on her " CHARGE " ear...(of course this only works with glasses!) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Amans hearing update Amrit wrote< aman had a hearing test yeterday. in his left ear, he has hearing of 60-65 decibels, and in his right ear, which is more affected, it is 75 decibels. well, normall hearing is in the range of 0-20 decibels, and totally deaf is 100 decibels. this puts aman in the moderate to moderately severe hearing loss range. they have already ordered hearing aids for his leaft ear, and with them, he will be able to hear as good as normal. his right ear will get an aid later because of its odd shape and softer tissue, it will not be able to support a hearing aid for now> Any suggestions for this? Pushpa grandma to Aman 7 months Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Although Jillyan does not have hearing aids -- if we are ever to go down that route her therapist suggested wig tape to hold them in place. As I have no experience I can't promise this works, but she has had other clients use it. Huggins Wife to Robin, Mom to Hailey (5) and Jillyan (1) Re: Amans hearing update Pushpa, We use " critter clips " to loop up over Kennedy's glasses and the hearing aid which has helped a lot to hold the aid up on her " CHARGE " ear...(of course this only works with glasses!) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Amans hearing update Amrit wrote< aman had a hearing test yeterday. in his left ear, he has hearing of 60-65 decibels, and in his right ear, which is more affected, it is 75 decibels. well, normall hearing is in the range of 0-20 decibels, and totally deaf is 100 decibels. this puts aman in the moderate to moderately severe hearing loss range. they have already ordered hearing aids for his leaft ear, and with them, he will be able to hear as good as normal. his right ear will get an aid later because of its odd shape and softer tissue, it will not be able to support a hearing aid for now> Any suggestions for this? Pushpa grandma to Aman 7 months Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Pushpa, What about his vision? Anne, mom of Penina (CHArgE, 5 3/4 years old) pushpakishore wrote: > Amrit wrote< aman had a hearing test yeterday. in his left ear, he has hearing of 60-65 decibels, and in his right ear, which is more affected, it is 75 decibels. well, normall hearing is in the range of 0-20 decibels, and totally deaf is 100 decibels. this puts aman in the moderate to moderately severe hearing loss range. they have already ordered hearing aids for his leaft ear, and with them, he will be able to hear as good as normal. his right ear will get an aid later because of its odd shape and softer tissue, it will not be able to support a hearing aid for now> Any suggestions for this? Pushpa grandma to Aman 7 months > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 on 6/4/02 8:29 AM, pushpakishore at kishorepushpa@... wrote: > Amrit wrote< aman had a hearing test yeterday. in his left ear, he has hearing > of 60-65 decibels, and in his right ear, which is more affected, it is 75 > decibels. well, normall hearing is in the range of 0-20 decibels, and totally > deaf is 100 decibels. this puts aman in the moderate to moderately severe > hearing loss range. they have already ordered hearing aids for his leaft ear, > and with them, he will be able to hear as good as normal. his right ear will > get an aid later because of its odd shape and softer tissue, it will not be > able to support a hearing aid for now> Any suggestions for this? > Pushpa grandma to Aman 7 months > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Anne, Amans was tested and has colobama, he does have vision though. Will inform you if we plan to visit Montreal, LOL, Pushpa grandma to Aman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Anne, Amans was tested and has colobama, he does have vision though. Will inform you if we plan to visit Montreal, LOL, Pushpa grandma to Aman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Anne, Amans was tested and has colobama, he does have vision though. Will inform you if we plan to visit Montreal, LOL, Pushpa grandma to Aman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 We used toupee tape (two sided tape available from a barber or beauty supply shop) to keep the aids in place. had her first aid when she was 6 weeks or so, and a wise developmental pediatrician decided that her early gross motor delays were probably caused by the flopping - and screaming - aid. When the thing blared, went still! Before that, we tried silly putty and everything else we could think of. The tape worked wonders when it came to allowing the baby to explore her world... Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Hi Pushpa, has bilateral, moderate to severe, mixed hearing loss. She has small ears with little asymmetry. But the cartilage is quite soft and floppy. She was aided at 6 mo. with BTE Phonak analog aids. It was the best aid that qualified for, under Medical Assistance. We didn't know what the aids were going to be like, we just felt fortunate to have assistance. The aids were very big and heavy! And yep they were always hanging from her ears, poking into the carpet when trying to roll etc. The taping didn't work well (the aids were just too big for her!) Her ears then began to protrude from her head. <they have already ordered hearing aids for his left ear>. What kind of aids have they ordered? In January, when was 15 mo. she received Oticon Digital BTE aids. They are much smaller and lighter : ) They fit nicely behind her ears. They were funded by two local clubs. As we know that we've met Angels on our journey. One of which we will be speaking at on the 20th of June, that is if is well by then? has an audiogram every 4-6 weeks, and also for reprograming and such. Her lasted audiogram revealed that she is responding to (some) frequencies at 20 decibels. However with the Phonak system she responded to those frequencies at about 35 decibels. Another product that 'might' work for keeping the aids secured is, Huggie Aids. However we didn't try them. But I know of a CHARGEr that is the same age as , who has outer ear abnormalities and they are working well for their situation. I am so thrilled that we now can count the days before you meet your precious grandson... Hugs and best wishes from the Hiltner's! Jan Mom to (shy 20 mo.) CHARGE Wife to MN USA Quote Link to comment Share on other sites More sharing options...
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