Wednesday, March 20, 2013

New Year Here We Come!!!!!!!

We are looking forward to Advanced Bionics new BTE processor.  It will be available this year and we will be upgrading Jack as soon as possible.  The processor is 40% smaller and the battery will hold charge for a longer time.  Jack now is getting about 14-15 hours of charge.  Sometimes when we go out at night and we forget to change batteries we do run out.  Hopefully this will be one more plus in our lives to not have to worry about remembering batteries. 

I will let you know how it works and if what they claim is true.

Update on Jack:  Jack is now in 4th grade and doing well.  He is an A-B student and his reading is getting better with each passing month.  He is currently envolved in Hockey and plays goalie for a local hockey club.  He is doing well and loves it.  He does well hearing with his helmet on and we have not hand any problems with sweat, like I thought we might.  His goalie helmet fits well around is implants without any customization. So.... not the case with his regular player helmet.  We had to cut out an area to fit his implant which always makes me worry about an impact because he is not protected where it has been cut out.  One reason I'm happy he is sticking with being a Goalie....better pads all around, and his helmet fits well and he is able to hear well with it on.

Jack winning MVP at the Notore Dame Cup.  Had a shut out game in overtime and an additional shoot-out.  Such and exciting game...he did so great!  Look out Blackhawks here comes Jack..........

Tuesday, April 17, 2012


Jack was just fitted with Clearvoice yesterday. He has been complaining about not hearing his teacher this year. We have tried an FM, but at his school he gets a lot of static and we have tried to fix and change things many times without change. Anyway, Jack's audiologist mentioned fitting Jack with Clearvoice and got him in right away. I will be excited to see if Jack notices a difference when he gets home from school today.

One thing that I will say, the volume needed to be turned up during programing. The audiologist said it usually needs to be adjusted to +5 to +10. Jack was turned up to +5 and he said it sounded great, but when we got home he said it needed more. Another thing that seemed to bother him is he was watching Adventure Time (his favorite show) and the characters were talking and there was music in the background of the program. He was very upset, saying he could only hear the talking and not the music....he wanted to hear both! He didn't like it!

I called the Audiologist this morning to discuss this with her and she suggested if Jack is still unhappy by Monday she will put his old program on a setting just for TV. He can have the Clearvoice for school and harder to hear situations. I will let you know our findings.......

So far....not sure if we are for Clearvoice or not???!!!!

With the cancel out feature for background noise....does it cancel out too much environmental sounds? Is this a safety concern (cars, ect)?

Thursday, January 12, 2012

Update on Jack

Today is January 12, 2012. Jack is now 9, almost February. We have been so please with Jack and his progress. He is mainstreamed in school and is doing great. He just brough home his end of second quarter math assesment test and he got a 93%. He is still having some trouble with reading...he's in 3rd grade and reading at a 2nd grade level, but he is catching up.

Jack is still seeing his AVT, who works mainly on reading and auditory memory tasks with him. Jack's articulation has greatly improved. The only thing he does now is mixes up his sentence structure sometimes in speech. This is why we believe the auditory memory piece will help this. He is also seeing a reading speciality outside of school.

In addition, to school and therapy, Jack has been playing hockey for the past year. He has just started playing goalie for an In-house Leauge and is doing great. He will probably be trying out for travel this year.

We are so proud of Jack and all his acomplishments! I never thought I would be as relaxed with Jack as I have been lately. It seems like as he matures, he is taking so much responsibility for himself now with his hearing and speech. He is a very hard worker and has such a personality that he attracts all that meet him.

Happy New Year!

Wednesday, December 01, 2010


My son has been on Speech Nutrient supplements for the past 2 years. He has done wonderfully on them and I started to notice a difference in his speech after about a month of use. He had an easier time remembering and he had better control over his speech.

These supplements are meant for kids with Apraxia. I'm not sure what is in them, but they do seem to work. I'm not saying that they are a CURE, but they do help.

If your interested in them you can check out information on

Happy Holidays!!!


Monday, October 25, 2010

New Group for Kids with Apraxia and Cochlear Implants

We're not alone. I've just created a new yahoo group for kids with both apraxia an hearing loss (deafness) who wear Cochlear Implants. I'm really excited to hear all the posts from all you other parents who are going throught the same things that I'm going through or have gone through. Hopefully we will be able to support and assist eachother on this journey. Knowledge is power!

Please join me at

Friday, May 21, 2010

Article on Caitlin Parton - 1st child to ever recieve a Cochlear Implant is all grown up!

What a wonderful Article written by Dan Woog. This shows what wonderful progress can be made for children with Cochlear Implants.

In 1987 Melody James and Steve Parton's 22-month-old daughter Caitlin almost
died. She recovered from her illness -- but suffered a profound hearing

The family's life turned upside down. Suddenly the couple had to raise a
deaf child. Among their many challenges was finding the most effective way
to help Caitlin communicate with the world.

The League for the Hard of Hearing (now called the Center for Hearing and
Communication) helped. They educated the Partons, mentored them -- and
identified Caitlin as a candidate for a cutting-edge technology called a
cochlear implant.

In that operation, a string of tiny electrodes is placed in the ear.
Electrical messages stimulate nerves to the brain -- something the inner
ear's damaged hair cells cannot do. Caitlin would be the youngest child to
have a cochlear implant. There were no studies to examine, no other families
to talk to.

To their surprise, the Partons ran into a buzzsaw of controversy. A segment
of the deaf community adamantly opposed cochlear implants for children and
teenagers. They called it "brain surgery." They decried it as a technique to
"fix" deafness -- a condition hearing people viewed as an illness or
pathology. The faction argued that deafness is not a disability or
infirmity; rather, they argued, the deaf culture is vibrant. They said that
for adults to force an operation on a child was ethically unjustifiable.

But, says James, "We're artists. We believe in books, reading, access to
information. We wanted to give that world to her. People who grow up with
ASL (American Sign Language) as their primary language read at a third or
fourth grade level. Reading poorly limits your opportunities in life."

ASL, James says, is "beautiful. But it doesn't compute to spoken or written
English. The syntaxes are different. It's hard to learn both

And, she notes, "it's unrealistic to think that everyone in the world signs.
If you rely primarily on signing, you're limited in the number of people you
can communicate with."

Some deaf people said that parents who wanted a cochlear implant for a
youngster were no different than black parents choosing an operation to make
their child white.

James disagrees. A more appropriate analogy, she says, is of people who
prohibited black children from learning to read.

James -- who graduated from Staples in 1964 -- was shaken by the vehemence
of some in the deaf community. "Growing up in Westport, I was involved in a
lot of causes," she says. "The town and students were very aware, and very
active in social justice causes. I believed everyone should have access to

The debate over cochlear implants in children "triggered a lot of emotions,"
she admits. "We didn't want Caitlin to be the only one. We wanted other
parents to have the ability to choose this extraordinary device, capable of
delivering more sound at an age when children are so capable of learning and
developing. That was a choice we made -- and a risk we took."

Caitlin got her implant in January 1988. It took two more years before the
Food and Drug Administration approved it for youngsters. Since then, nearly
200,000 people worldwide have received cochlear implants -- including some
toddlers less than a year old. Thousands of children with the devices are
now doing "amazing things," James says.

Caitlin has certainly prospered. She was mainstreamed throughout her
Westport educational career. She graduated from Staples in 2003, having
served as editor-in-chief of the school newspaper, inklings. She played
piano for 12 years, and studied French -- "all very difficult things for
profoundly deaf students," James says.

Four years later -- after graduating from the University of Chicago, and
interning for Senator Tom Harkin of Iowa -- Caitlin was hired as a paralegal
for a leading Washington, D.C. civil rights law firm. She's now studying for
her LSATs, and hopes for a career in public policy.

Caitlin's deafness, James says, is "part of her identity. She's fluent in
ASL -- but it's not her first language. We taught her to listen -- to use as
much sound as she could get in, to develop as natural a spoken English
language as was possible.

"Caitlin is a very confident young woman," her mother continues. "She
functions in the signing world, and has many deaf friends with cochlear
implants. They sign, they talk -- they've accomplished great things.

All that took "incredibly hard work on Caitlin's part," James says. It also
changed her parents' lives. "We put a lot of energy and creativity into it.
It was a full family effort."

Part of their effort involved spreading awareness about cochlear implants.
On Caitlin's 10th birthday, the family addressed an international convention
on deaf education. "People from South Africa and Croatia swarmed around
her," James recalls. "She was a real ambassador."

Ed Bradley did a piece -- "Caitlin's Story" -- that won an Emmy for 60
Minutes. It was later shown to members of the British Parliament.

James and Parton have day jobs -- she is a teaching artist for the Westport
Country Playhouse and teaches theater at Housatonic Community College; he is
a portrait artist, educator and illustrator -- but they continue to advocate
for people with hearing loss. For nine years, James directed the Resource
Center for Public Education at the Center for Hearing and Communication.

For their long work as advocates and educators for the needs of people with
hearing loss, the Parton family will be honored this coming Tuesday by the
CHH. They'll receive the Edward Nitchie Award -- named for the
organization's founder, a man who himself was a pioneer for deaf people.

The award is particularly significant, because this is the 100th anniversary
of the CHH. The group's tagline reads: "Celebrating 100 Years ... Hear for
the Future."

The speeches honoring the Partons will be meaningful, I'm sure. But even the
most eloquent words will never compare to hearing their daughter speak every
day, about anything and everything.

It's music to Melody James' ears.

Dan Woog is a Westport writer. His blog is; his e-mail

Friday, May 14, 2010

Replacement of Inner Hair Cells. In our Future?

Stanford Discovery Could Lead To Cure For Deafness

Posted: 5:19 pm PDT May 13, 2010Updated: 6:50 pm PDT May 13, 2010
STANFORD, Calif. -- A new discovery from Stanford researchers may pave the
way for treatment -- and even a possible cure -- for deafness.

Stem cell scientists reported Thursday that they have for the first time
created in the laboratory the inner-ear cells responsible for hearing and

For the profoundly deaf, a risky and invasive cochlear implant is currently
the only way to restore hearing.

Doctors said in the vast majority of cases, the auditory nerve is intact.
But it's the inner ear that doesn't work.

"It's usually a loss of the sensory cells inside of the cochlea," said
Stanford Cochlear Implant Surgeon Dr. Nikolas Blevins. "And that is exactly
what a cochlear implant is designed to bypass."

Thursday's announcement suggests that there may be another way.

"It's a huge step forward for basic science," said Professor of
Otolaryngology Stefan Heller.

Professor Heller and his colleagues said the huge step is that they've
created the first functional cochlear sensory cells from stem cells.

Inside the spiral inner ear, there are only a few thousand sensory cells.
They do not regenerate once damaged by noise, virus or if genetically
absent. Deafness is permanent.

Scientists used mouse stem cells to create sensory cells that had a tiny but
critical hair bundle.

"This is a sensor which detects sound vibration and converts it to
electrical signal," explained Stanford researcher Dr. Kazuo Oshima.

"Fascinatingly, the cells were working which is a major step forward," said
Heller. "Eventually in the future possibly a cure for hearing loss."

Researchers cautioned that parents should not wait for this cure because it
could be a decade or more away. And while some people in the deaf community
applaud research, one summed it up to KTVU in a view not uncommon among deaf
people: "Why don't they quit trying to fix us.