We've got a fun and craftsy blog post in the works that should be ready soon. Stay tuned for that. Meanwhile, here's a brief round-up of talk on the CI Circle Yahoo Group for parents. (And thanks to all who have voted in our survey above. The survey continues for a couple of weeks.)
Missing Gina Maser
Parents asked where to get a bilateral bodyworn harness for Advanced Bionics processors. Once upon a time, a mom named Gina Maser would make custom harnesses for people. She is no longer in the business and is sorely missed. Some parents say the harness made by Advanced Bionics works well for them. Others make their own, sometimes using an old geniune Gina harness as a template.
Speech Apraxia
Some deaf children who hear great with their CIs have difficulty pronoucing words due to speech apraxia (also true of some hearing children.) The signs of apraxia were discussed. Parents of children with apraxia of speech recommended finding professionals who specialize in this area.
Northeast Cochlear Implant Convention (a.k.a. Sturbridge)
The schedule of talks is out! Visit the convention home page and click on the tabs at the top of the web page. Keynote speaker is Josh Swiller, author of The Unheard - A memoir of deafness and Africa.
Buff wear!
Several parents reported getting the buffwear headwear that we mentioned last week, and are pleased with it.
To CI or not to CI
A new list member wondered whether or not to get an implant for her child and when, and whether to get one implant or two. Readers urged the new member to get an implant or two for their child if the child is audiologically a candidate, and to do it sooner rather than later. (We have an earlier blog post on the bilateral question.)
Hi-Res 120
A parent asked when this strategy would be FDA approved for children. Several members said their children have been using it for quite a while already and that it is available.
Choosing a brand
The common question of which CI brand to choose came up again. This generated some slightly heated discussion, though did not degenerate into a full scale brand war. CI Circle News readers may be interested in an old blog entry on this topic.
If you are the parent of a child with (cochlear implant(s) or if your child is about to get (a) cochlear implant(s), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and 'no email' option (read posts via yahoo website.) Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org
Jun 12, 2009
Jun 5, 2009
CI Circle Weekly Round-up May 30-June 5
Can't promise we'll keep the round-ups going indefinitely, but here is the buzz this week among parents at the CI Circle Yahoo Group. And while you are here, check out our readership survey (above.)
Valedictorian!
List members with children of all ages were inspired by a Salem (Ohio) News story about one member's daughter, a high school senior.
CSF gusher
A parent asked about this potential surgical complication in children with atypical cochlear anatomy, and a surgeon's hesitation about doing a sequential bilateral surgery because of it. Other parents shared their experiences and outcomes, and suggested a second opinion.
End-of-Year Awards
The topic of awards for elementary school children was brought up. It's particularly hurtful to an overlooked child when a teacher decides to give awards (academic, etc.) to most but not all of the students in a class. Parents shared stories where just a few children were left out of awards or rewards for the class. The common sense of teachers who recognize all but 2 or 3 kids in the class, or who publicly humiliate elementary school-age children was questioned.
IEP conundrum
The hypothetical question came up of whether or not it is legal, if a child requires CART or C-Print to access the curriculum, for the school district to provide this service but only if the student goes to another school in the district where the service is more readily available. Both sides were argued.
Cochlear's New Implant
More information surfaced about Cochlear's new implant in the form of an article in The Age, an Australian newspaper. There is speculation that Cochlear will gain US FDA approval soon and will unveil its new internal and external devices at the CI2009 Conference in Seattle this month.
Raleigh-Durham area
School quality in this part of North Carolina was discussed, with positive impressions but no personal experience shared.
Buff-wear
A parent shared that a good product for securing sound processors during active sports, etc. is the Buff, that some contestants on Survivor wear (no, not the Season 1/Richard Hatch type of "buff"!) You can get one at REI. For demos on how to wear the Buff, visit buffwear.com's site.
Children with implants and illness
A parent asked if children with cochlear implants seemed more susceptible to common colds, etc. Some felt their child with a cochlear implant did get sick more often or for longer while others felt there was no difference or that other children in their family were sick more than the child with an implant.
Have a good weekend!
-- The CI Circle News Staff
If you are the parent of a child with cochlear implants or if your child is about to get a cochlear implant (or two), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and no email option (read posts via yahoo website.)
Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org
Valedictorian!
List members with children of all ages were inspired by a Salem (Ohio) News story about one member's daughter, a high school senior.
CSF gusher
A parent asked about this potential surgical complication in children with atypical cochlear anatomy, and a surgeon's hesitation about doing a sequential bilateral surgery because of it. Other parents shared their experiences and outcomes, and suggested a second opinion.
End-of-Year Awards
The topic of awards for elementary school children was brought up. It's particularly hurtful to an overlooked child when a teacher decides to give awards (academic, etc.) to most but not all of the students in a class. Parents shared stories where just a few children were left out of awards or rewards for the class. The common sense of teachers who recognize all but 2 or 3 kids in the class, or who publicly humiliate elementary school-age children was questioned.
IEP conundrum
The hypothetical question came up of whether or not it is legal, if a child requires CART or C-Print to access the curriculum, for the school district to provide this service but only if the student goes to another school in the district where the service is more readily available. Both sides were argued.
Cochlear's New Implant
More information surfaced about Cochlear's new implant in the form of an article in The Age, an Australian newspaper. There is speculation that Cochlear will gain US FDA approval soon and will unveil its new internal and external devices at the CI2009 Conference in Seattle this month.
Raleigh-Durham area
School quality in this part of North Carolina was discussed, with positive impressions but no personal experience shared.
Buff-wear
A parent shared that a good product for securing sound processors during active sports, etc. is the Buff, that some contestants on Survivor wear (no, not the Season 1/Richard Hatch type of "buff"!) You can get one at REI. For demos on how to wear the Buff, visit buffwear.com's site.
Children with implants and illness
A parent asked if children with cochlear implants seemed more susceptible to common colds, etc. Some felt their child with a cochlear implant did get sick more often or for longer while others felt there was no difference or that other children in their family were sick more than the child with an implant.
Have a good weekend!
-- The CI Circle News Staff
If you are the parent of a child with cochlear implants or if your child is about to get a cochlear implant (or two), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and no email option (read posts via yahoo website.)
Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org
May 29, 2009
CI Circle Weekly Round-up May 22-29, 2009
Your editors apologize for the lack of posts in recent weeks (we've been busy getting teeth pulled, chaperoning dances, publishing information booklets and remodeling bathrooms.) So this week we're offering a round-up of discussion topics that came up on the CI Circle Yahoo discussion group for parents of children with cochlear implants. Despite the Memorial Day holiday in the US, the CI circle was quite active with about 180 posts. Topics included:
Finding a lost rechargeable battery
A parent wondered how to go about finding an expensive rechargeable CI battery lost at a playground. She later reported that she solved her own problem: "We posted a photo of the battery and a reward and 4 days later, a gentleman called saying that his grandson had found it!"
Auditory-Verbal Therapy history
A parent from Europe who is putting together some information asked about the history of Auditory-Verbal Therapy. A veteran A-V parent replied that the approach began quite a few years ago and was known as Acoupedic approach and the Unisensory approach (1930s?). These were developed by Helen Hulick Beebe (born in 1909) and Doreen Pollack (same generation.) Daniel Ling (of the Ling 5 or 6 sound test) was slightly younger (born 1926). Some of their first followers included Warren Estabrooks, Judith Marlowe, Judy Simser, Jim and Lea Watson and others.
The Freedom Mini BTE
A parent of an infant asked about the Freedom mini BTE from Cochlear. This on-the-ear option is smaller than the standard size, but does not allow one to plug in any accessories or monitoring headphones. A parent replied their young child's audiologist activated the light option to help them tell if the processor is working. Another parent mentioned that even though one can not plug in an FM receiver to the mini BTE controller, it is possible to use a Phonak MyLink neckloop-type FM. The discussion evolved to include the pros of the Advanced Bionics body-worn Platinum processor (advantages are ruggedness and only having one thing on the head.)
A Mum Moment
(no paraphrasing here, just the post in its entirety)
"oh have to share this mum moment - my "baby" is almost 17 and in year 11. His school has a combined year 11/12 formal and as part of that they have dance tuition with someone from outside the school coming in to teach them. It is good they do progressive style dances with everyone involved, but they use modern music so the kids enjoy the experience with music relevant to them. Sooo because I am in admin at his school, I wandered over to the gym today during dance tuition. There was my boy in the thick of it doing an awesome job following the guy giving instructions, he did have a mic and basic kind of soundfield set up I think it was, but he was giving counts over the top of the music. If you scanned the room, you wouldn't have picked him but for the fact he is one of the tallest kids there. It was a special moment. To be followed by the special moment of the actual formal where he has asked one of the girls in his most of his classes and she said yes. In fact she said yes and then did the Toyota "oh what a feeling" jump as she walked away LOL"
Implant technology
A parent in the midst of choosing a cochlear implant brand for her child wondered how many output circuits the Med El implant has. The answer is 24.
New Cochlear device on the horizon?
Parents discussed what they have heard about new products coming from Cochlear. One parent says her child received a new internal device that is smaller. Another parent said they heard that clinical trials are under way in children in Europe and Canada for this new device. Parents reported hearing that there is also a new BTE processor coming from Cochlear that its called the Mulberry, though this is most likely a temporary name and not what it will be called when released. Rumored features of this new BTE include an integrated FM receiver, being truly waterproof as opposed to water-resistant, being small, and having a remote control. It will also supposedly come in "iPod-like colors." The new processor might be available later in the year.
Trying to buy an FM
A parent wants to buy an FM system for her child for home use (the child has one at school, but it belongs to the school and remains at school.) She recounted the difficulty in finding someone to sell it to her that would take her insurance. Phonak does not sell directly to parents, only to audiologists and schools. The parent could not find any durable medical equipment dealers in Pennsylvania that will purchase it for her and bill her insurance. Phonak: Please make your FM products more available to parents!!!
Using a CI and Hearing Aid together
A parent of a school-age child who currently uses hearing aids but will be getting one implant wondered if there are children who use a CI and hearing aid together. Indeed there are, as several replied. This is called "bimodal hearing" and has advantages over just hearing with a CI in one ear alone.
Swimming with a CI
A family that recently had a pool installed asked for details about how children are able to swim and hear while wearing their CI processor. Several people responded that their children enjoy this very much and that it is fairly easy and safe to do. Ingredients include a BTE processor that uses a rechargeable battery (disposable batteries require air to run and may stop working temporarily), a waterproof baggie such as the aLoksak or a large latex balloon, and a lycra or silicone swim cap of sufficient size.
Video of swimming and hearing with an implant processor
Rechargeable 675 batteries
The swimming discussion morphed into a discussion of how to use 675-type Zinc-Air batteries in a nearly airless environment (like the Aloksak baggie.) A parent found that there are now some rechargeable 675-size hearing aid batteries, but no one has reported trying them yet. Sources for the rechargeable batteries are www.batteryjac.com (the same Solar battery, made in Botswana (a sunny place), is also available through Amazon.com) and microbattery.com (675 charger coming soon.)
Happy Summer!
from the CI Circle News editors
If you are the parent of a child with (cochlear implant(s) or if your child is about to get (a) cochlear implant(s), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and no email option (read posts via yahoo website.) Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org
Finding a lost rechargeable battery
A parent wondered how to go about finding an expensive rechargeable CI battery lost at a playground. She later reported that she solved her own problem: "We posted a photo of the battery and a reward and 4 days later, a gentleman called saying that his grandson had found it!"
Auditory-Verbal Therapy history
A parent from Europe who is putting together some information asked about the history of Auditory-Verbal Therapy. A veteran A-V parent replied that the approach began quite a few years ago and was known as Acoupedic approach and the Unisensory approach (1930s?). These were developed by Helen Hulick Beebe (born in 1909) and Doreen Pollack (same generation.) Daniel Ling (of the Ling 5 or 6 sound test) was slightly younger (born 1926). Some of their first followers included Warren Estabrooks, Judith Marlowe, Judy Simser, Jim and Lea Watson and others.
The Freedom Mini BTE
A parent of an infant asked about the Freedom mini BTE from Cochlear. This on-the-ear option is smaller than the standard size, but does not allow one to plug in any accessories or monitoring headphones. A parent replied their young child's audiologist activated the light option to help them tell if the processor is working. Another parent mentioned that even though one can not plug in an FM receiver to the mini BTE controller, it is possible to use a Phonak MyLink neckloop-type FM. The discussion evolved to include the pros of the Advanced Bionics body-worn Platinum processor (advantages are ruggedness and only having one thing on the head.)
A Mum Moment
(no paraphrasing here, just the post in its entirety)
"oh have to share this mum moment - my "baby" is almost 17 and in year 11. His school has a combined year 11/12 formal and as part of that they have dance tuition with someone from outside the school coming in to teach them. It is good they do progressive style dances with everyone involved, but they use modern music so the kids enjoy the experience with music relevant to them. Sooo because I am in admin at his school, I wandered over to the gym today during dance tuition. There was my boy in the thick of it doing an awesome job following the guy giving instructions, he did have a mic and basic kind of soundfield set up I think it was, but he was giving counts over the top of the music. If you scanned the room, you wouldn't have picked him but for the fact he is one of the tallest kids there. It was a special moment. To be followed by the special moment of the actual formal where he has asked one of the girls in his most of his classes and she said yes. In fact she said yes and then did the Toyota "oh what a feeling" jump as she walked away LOL"
Implant technology
A parent in the midst of choosing a cochlear implant brand for her child wondered how many output circuits the Med El implant has. The answer is 24.
New Cochlear device on the horizon?
Parents discussed what they have heard about new products coming from Cochlear. One parent says her child received a new internal device that is smaller. Another parent said they heard that clinical trials are under way in children in Europe and Canada for this new device. Parents reported hearing that there is also a new BTE processor coming from Cochlear that its called the Mulberry, though this is most likely a temporary name and not what it will be called when released. Rumored features of this new BTE include an integrated FM receiver, being truly waterproof as opposed to water-resistant, being small, and having a remote control. It will also supposedly come in "iPod-like colors." The new processor might be available later in the year.
Trying to buy an FM
A parent wants to buy an FM system for her child for home use (the child has one at school, but it belongs to the school and remains at school.) She recounted the difficulty in finding someone to sell it to her that would take her insurance. Phonak does not sell directly to parents, only to audiologists and schools. The parent could not find any durable medical equipment dealers in Pennsylvania that will purchase it for her and bill her insurance. Phonak: Please make your FM products more available to parents!!!
Using a CI and Hearing Aid together
A parent of a school-age child who currently uses hearing aids but will be getting one implant wondered if there are children who use a CI and hearing aid together. Indeed there are, as several replied. This is called "bimodal hearing" and has advantages over just hearing with a CI in one ear alone.
Swimming with a CI
A family that recently had a pool installed asked for details about how children are able to swim and hear while wearing their CI processor. Several people responded that their children enjoy this very much and that it is fairly easy and safe to do. Ingredients include a BTE processor that uses a rechargeable battery (disposable batteries require air to run and may stop working temporarily), a waterproof baggie such as the aLoksak or a large latex balloon, and a lycra or silicone swim cap of sufficient size.
Video of swimming and hearing with an implant processor
Rechargeable 675 batteries
The swimming discussion morphed into a discussion of how to use 675-type Zinc-Air batteries in a nearly airless environment (like the Aloksak baggie.) A parent found that there are now some rechargeable 675-size hearing aid batteries, but no one has reported trying them yet. Sources for the rechargeable batteries are www.batteryjac.com (the same Solar battery, made in Botswana (a sunny place), is also available through Amazon.com) and microbattery.com (675 charger coming soon.)
Happy Summer!
from the CI Circle News editors
If you are the parent of a child with (cochlear implant(s) or if your child is about to get (a) cochlear implant(s), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and no email option (read posts via yahoo website.) Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org
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