JACK'S STORY

Update on Jack

2012-01-12T11:54:00.000-08:00

Today is January 12, 2012. Jack is now 9, almost 10...in 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!

SUPPLEMENTS

2010-12-01T07:15:00.000-08:00

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 http://www.speechnutrients.com/

Happy Holidays!!!

Julie

New Group for Kids with Apraxia and Cochlear Implants

2010-10-25T14:05:00.000-07:00

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 http://groups.yahoo.com/groups/cisandapraxia

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

2010-05-21T15:45:00.000-07:00

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
loss.

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
simultaneously."

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
opportunities."

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 www.danwoog06880.com; his e-mail
is dwoog@optonline.net.

Replacement of Inner Hair Cells. In our Future?

2010-05-14T06:02:00.001-07:00

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
balance.

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.

CHOOSING A BRAND OF IMPLANT - Pulled from another blog (funnyoldlife.worldpress.com)

2010-03-17T07:12:00.000-07:00

Choose a brand that is the best one for YOU.

What is a cochlear implant? Imagine you’ve bought yourself a new computer. The computer hardware is the implanted part of the cochlear implant (AB’s HiRes 90k, MedEl’s Pulsar & Sonata, Cochlear’s Freedom), the computer processor is the external speech processor (AB’s Harmony, MedEl’s Opus or Cochlear’s Nucleus 5), and the software is the programme which is adjusted through a series of mappings with the audiologist (AB’s HiRes Fidelity 120, MedEl’s FineHearing, Cochlear’s SmartSound). The cochlear implant companies bring out upgrades in the form of additional software to improve hearing functionality – such as AB’s ClearVoice which reduces background noise to provide greater speech clarity and ease of listening in noisy environments.

In the UK, you will usually be offered 3 cochlear implant brands to choose from;
MedEl
Advanced Bionics (AB)
Cochlear

You might be offered a fourth, Digisonic SP by Neurelec, which has been available since 2004.

Which one is the best? My cochlear implant team told me they were all the same. But are they? Remember, they are audiologists and surgeons, not electrical engineers. Plus, they’re not deaf, so they don’t have a personal interest in ensuring you are fitted with the best cochlear implant for you. Each brand has positives and negatives, in the implant electronics (which is the ultimate limiting factor in the stim that can be applied), the electrode array itself, the processor hardware, and the DSP software. The electronics in the implanted part are what you own; and any ability for processor hardware and software improvements on the outside for a better stim hinge on what the internal circuits can accurately yet quickly decode. Basically, it boils down to this: the processor is something replaced/upgraded every 3-5 years, and you do indeed need to live with it until the next upgrade comes out. The implanted electronics is something you’ll be living with for the next 20 years (or longer). Whatever level of technology in the stim you get when it’s switched on is what you’ll have to live with.

By a good margin, AB and MedEl have the best implant electronics with separate current sources for each electrode button. AB’s can fire 90k pulses per second on its 16 buttons simultaneously with both + .AND. – charges; MedEl can fire about 56k pulses (but simultaneously either – .OR. +) per second on its 12 electrodes; while Cochlear’s can only fire 30k pulses per second, and only one pulse at a time. This means AB has 128 virtual electrodes, MedEl has somewhere around 90 (but they don’t claim a number due to their triangular waveform)… while Cochlear only has 22, with an unapproved (in US) capacity of 43 with current shorting.

The physical electrode array itself is where the action is, especially if residual hearing is desired to be preserved. Here, MedEl is on top, while Cochlear is also rather good. That being said:

Preservation of residual hearing also greatly depends on the skill of the surgeon, with an overall average of about 65-70%. The best cochlear implant surgeon in the world is Rick Case at Washington University in St Louis (WUSTL) who has a 98% success rate, and John Niparko at Johns Hopkins University in Baltimore (JHU) is right with him.

Preservation of residual hearing is also subject to a third variable, besides manufacturer and surgeon: whether the electrode is placed perimodionally or floating. Perimodional (wrapped in a tight spiral around the core) placement puts the buttons closer to the nerves for a better stim with lower power and tighter focus (especially if current steering is enabled), and it also enables a deeper placement for a given length (tighter radius); but it also entails a higher risk to to residual hearing.

The processor hardware is important, as it entails both the number-crunching capacity of the chips needed for speech processing and digital noise reduction, and also the physical container:

On the processor capacity itself, all three are adequate for the stimulations that the implant electronics can deliver at present. That being said, the implant electronics for Cochlear is already stretched to capacity; while Dan estimates MedEl’s still has 5-7 years to go and AB’s at least a decade.

The physical packaging for the new Freedom 5 is rather good, with waterproofing technology borrowed from RION’s HB-54 series hearing aids; and being shrunk almost as small as the MedEl Opus2. With 50% of cochlear implants going into children (at least in the USA), Advanced Bionics’ relatively clumsy processor has turned off many parents and cochlear implant centres for infants and small children.

The DSP (Digital Signal Processing) software running in the processor is also important, as there are two main parts to it: the manipulation of the incoming sound across the frequency spectrum for noise reduction - or lack thereof for music - and the conversion of the processed sound into one of the various stimulation strategies (CIS, n-of-m (ACE), Hi-Res Parallel, Hi-Res Sequential, etc)… which is ultimately limited by the amount of memory and processing power of the electronics in the implant itself.

Audiologist Jo-Ann has programmed Advanced Bionics and Cochlear patients. The biggest thing she wishes recipients to know is that everyone’s brain is different. You cannot predict how you will do, so having a choice of processing or coding strategies is key. Just like with hearing aids, some people prefer the sound of Phonak some Oticon, etc. With AB, they have MPS, CIS, HiRes-S, HiRes-P, HiRes-P with 120, and HiRes-S with 120.

Audiologist Joanna has mostly dealt with Medel, 30% with Cochlear and 1 with AB. She says the implant itself is only part of the solution. Most of your work starts when the processor goes on and most of it is positive mental attitude coupled with lots of listening practice. The more you practice the better the discimination becomes. For some, clarity happens straight away – for others it takes time, so there is no easy answer.

Some people’s brains prefer the sound of HiRes-S vs HiRes-P because they stimulate differently. With Cochlear you really only have one choice. Cochlear patients cannot try out other strategies because there is only one power source. This is also what gives the audiologist flexibility in making a good program for you. Even if Cochlear has new software coming out; with one power source you are limited. Jo-Ann compares it to building a house with 22 rooms. If you only have one light switch you can turn all the lights on or all of the lights off. You need multiple power sources to turn off/on on each “room” individually. This is also why Cochlear rates are slower and they can get away with disposable batteries.

It’s always a great idea to contact each company and speak with one of their audiologists-ask as many questions as possible especially about the research and about the internal capabilities. It’s also great to find a centre that has done equal amounts of each company so they have a less biased opinion. The company audiologists are the ones that will be supporting your programming audiologist and helping your centre after you are implanted. Surgeons really only see you once a year and don’t know about the programming. Also they won’t know about the external returns or breakdowns. Another test for companies is to call their customer service line and see how fast you get hooked up to a real person. (Courtesy Jo-Ann, audiologist)

ADVANCED BIONICS

Check out AB Harmony v Nuke 5

AB’s is by far the leader in the implant electronics, with full current steering for 120 virtual electrodes from their 16 electrode buttons and HiRes speed delivering up to 90 thousand updates per second for the best stims, especially for music & for speech intelligibility in noise.

The downside to AB is in about 5% of implant surgeries because they only make two electrode arrays — The “antenna” that goes into your cochlea. Both the Helix, for perimodiolar placement, and 1J semi-curved, for lateral placement, work well… But not for everyone.

One of AB’s implantees, Mike Marzalek, is writing stimulation software to achieve better music enjoyment with his cochlear implant. It only runs on his special hand built speech processor. If successful, this will open the door to more people getting cochlear implants as you won’t have to be quite as deaf to get real benefit, not to mention faster & better aural rehab, which is often overlooked. Dan says,

While you’re on Mike’s site, be sure to view his biography page. Read the 6th paragraph; and if it doesn’t sink in, rinse and repeat until it does.

There are two other “CI Insiders” who are also guiding me; but what Mike has up his sleeve writing his own stim and testing it on himself as he goes along is the reason why I’ve chosen an Advanced Bionics implant.

This is in addition to AB’s ClearVoice noise reduction technology, now released in the UK (March 2010) and Canada (February 2010); but still awaiting FDA approval for release in the United States. That, coupled with Phonak’s buying of AB in September 2009 means that their 50 years of “front end” audio processing will be migrating to the next generation of BTE processors to be married up with the “back end,” the actual encoding of the signal for electrical hearing.

AB’s offerings are quite good; but they lack in one critical area: The electrode array itself. When it comes to preserving residual hearing, their older 1J semi-curved electrode in a lateral (hugging the outside wall) placement isn’t too bad, even though it was designed to be used with the positioner (which stopped being included after they resumed shipping c.2002). On the other hand, AB’s Helix array, which is designed for a perimodional (hugging the inside perimeter, close to the spiral ganglion) placement, makes hash as it’s threaded in.

Worse for AB is that AB’s chief electrode engineer, Janusz Kusma, was fired by CEO Jeff Greiner in a pissing contest, putting them years behind MedEl and even Cochlear when it comes to low insertion trauma.

Still worse, AB has no other offerings, such as compressed electrode arrays for partially-formed or ossified cochleas: You either get a 1J or a Helix array… Period.

AB’s processor is the largest of the three — about the size of the MedEl Opus 1.

MEDEL

MedEl is about 7 years behind AB on the electrode itself, with about 55,000 updates/second; but they only have partial current steering with their FineHearing; and an estimated 90 virtual electrodes with their triangular waveform. With the MedEl Sonata implant you’ll have 5-10 years of new stims still coming. Looking at size, the MedEl Opus2 processor is much smaller than the Nuke5.

The upside to MedEl over AB is their selection of electrodes for almost every type of cochlea imaginable; and custom built electrodes that nobody else can do.

There is quite a bit of antipathy about MedEl. The issue is in the surgical placement of the electrode into the cochlea itself; and although there are similarities, there are also wide differences, especially when attempting a perimodional (vs lateral) electrode placement when threading it into place. What you want, especially for the tricky perimodional placement while trying to preserve residual hearing, is a surgeon with a lot of experience with that cochlear implant brand. MedEl’s processor and implant electronics are almost as good as AB’s; and their variety of electrode arrays is as good as, maybe even better than, Cochlear’s.

COCHLEAR

Bringing up the rear (from the implant electronics technology, working outwards) is Cochlear. They are hopelessly buried by competitor AB and MedEl patents. Because of this, even though they have a slick new Nucleus 5 BTE w/remote, they are still limited to the same 30,000 updates per second as they were over a decade ago. And, even though they have 22 electrode buttons, the best they can do is 43 virtual electrodes with current shorting — and they still haven’t released it yet!

The Nuke is about the same as MedEl’s CI from 2006. Cochlear has almost nothing new. They have a huge marketing budget though so beware, not all that glitters is gold….

There is one area where the Nuke 5 is worth a very long, careful look: children. Even though the implant electronics are obsolete, the implant itself is quite robust (or at least previous Nucleus implants are), and with infants and small kids they can’t tell you if it’s not working properly. The Freedom 3G processor has a fingernail-sized LCD status display on it; while the Nuke has a dual purpose (and bidirectional) remote control that also is a status indicator, duplicating the processor’s LED status lights. This is handy because a parent or teacher can simply walk up to the child with the remote, push a button, and get instant feedback from the processors and implants. This can be helpful when the parents themselves aren’t diligent in watching their children’s hardware.

SUMMARY

Best hearing performance – Only recently have independent comparative studies been published, and AB came out on top in all of them.

Best reliability – All manufacturers claim +99% reliability for the implant, but only AB includes the external processor in the calculation. AB doesn’t make a big deal about water resistance, but their warranty does cover water damage. Cochlear makes claims about water resistance, but their warranty does not cover water damage.

Best upgradeability – AB’s HiRes 90k uses about 25% of its capabilities. Cochlear’s implant is pretty much tapped out, while Med-El’s is somewhere in the middle. The implant is the part you plan to keep for a very long time.

The T-mic – MedEl and Cochlear have their mikes on top of the ear, like BTE hearing aids. But AB has the mike at the tip of the ear hook, which is right at the entrance to the ear canal. This means your ear shapes the sound normally. Most users find this works much better than the BTE mike (which is also included, and is selectable in software). And you can use phones and headphones just like a hearing person. It’s patented, so the other manufacturers can’t put the mike there.

Miniaturization of processors – AB was purchased by Sonovus, the holding company of Phonak, in January 2010. This means that AB is the only company with access to the super miniaturization technology and years of experience of a hearing aid company. And Phonak is among the best. While AB’s processor isn’t currently the smallest, look for excellent features down the road.

INDEPENDENT STUDIES

Spahr et al EH 2007 compares performance of cochlear implants from Advanced Bionics, Med-El and Cochlear.

Audiology Online: “Preliminary Comparison of Performance between Patients Fit with the CII Bionic Ear and Patients Fit with the Nucleus 3G.” M. Dorman (Arizona State University), A. Spahr (Arizona State University) and K. Kirk (Indiana University School of Medicine), June 2003

In an independent study supported by NIDCD grant and contributions from all cochlear implant manufacturers, researchers compare performance between adults who use HiResolution sound and those who use the Nucleus 3 System. Results from the study’s first reported findings indicate that there “are differences in performance between patients using the two implant systems.” “Significant differences in performance (p <>

With thanks to (1) Surgeons Dr Lavy and Prof. Saeed, speech therapist Liz Stott (2) Dan Schwartz, a deaf electrical engineer formerly in the hearing healthcare business – he is about to get a CI. (2) Jo-Ann, audiologist (4) Joanna Nicholson, audiologist (4) Howard Samuels, BEA Mentor (5) Advanced Bionics, Med-El, Cochlear.

My baby is 8

2010-03-09T10:58:00.000-08:00

Time has flown by and now Jack (my baby) is 8 years old. It has been a time of reflection for me on how far Jack has come. From the start when we found out he was born deaf(six weeks old) , to unuseful hearing aid trial (declining loss - 18 months) , cochlear implantation (21 months) , bi-lateral cochlear implantation (31/2 years) , implant failure (4 years) , diagnosis of Jack having severe apraxia (4 years), to today. What a whirlwind it's been....I'm exhaused.... But what a blessing it has all been to me.

I went through a major greeving period after Jack was diagnosed. He was not my "perfect" baby...he was flawed. This was how I felt. I did not understand how or why this could be happening to me, to him! I look and do not see Jack as flawed at all, he is a remarkable, intelligent, fun, caring, loving, funny, handsome, friendly, fearless boy that I love. All of these issues has made Jack who he is. I would never change a second in time if it would change the boy I know and love today.

I have learned that life still holds challenges for my son, but they are challenges I know he has the skills to handle. In this too, I have learned that I can handle challenges that come my way too and that I am a very strong person. We are both strong for this life learning experience....thank god for this experience. I am blessed.

Happy Holidays

2009-12-18T08:19:00.000-08:00

Jack 7 yrs and Maddie 10 yrs.

2009-08-25T19:43:00.000-07:00

Hello all its been a very long time since my last post.

Just wanted to update on Jack's great Audiology Apt recently. His scores were as follows....and this was with severe apraxia....by the way!!! We were all very happy.

Nu-Chips - (Right CI) MLV/45db Word Score 25/25
Nu-Chips - (Left CI) MLV/45db Word Score 24/25

MLNT Easy #1 (Right and Left CI) Word Score 92% Phoneme Score 98%
MLNT Hard #1 (Right and Left CI) Word Score 92% Phoneme Score 98%

PBK#2A - (Right CI) Word Score 72% Phoneme Score 89%
PBK#2A - (Left CI) Word Score 80% Phoneme Score 90%
PBK #1A - (Right and Left CI) Word Score 92% Phoneme Score 97%

As you can tell on the PBK testing Jack score much higher with both implants on. Another clue that two ears are better than one! Hurray for bi-lateral hearing.

What a Great Year!!!

2008-11-12T15:59:00.000-08:00

Jack is making such great strides in regards to his apraxia. His hearing if you can believe it is actually his strength, thanks to his implants.

I just had Jack's parent teacher conference and his is doing quite well, better than I expected. He is keeping up in math and his teacher says that his patterning is at the highest level they test so far this year. Yea!! He is quite the little artist too.

He is getting so much better with his speech and his teachers have noticed a big improvement from last year. He still has some word retrieval issues associated with his apraxia, but it is getting much better with training. No we see as things have been sorted out that he infact, does not have memory issues and it is all do to his filing cabinet (brain) and the things he wants to say have not been in the right place for him to grab. Finally, there is a light at the end of the tunnel.

Jack is still having some issues with speech errors, but those too are finally being sorted out and his is speaking wonderfully.

Finally, I can now sit back and relax a bit........Jack is progressing and progressing well. He is even keeping up in school!

The picture above is from our summer vacation. Ahh....summer....please come back!!!

Totally Implantable CI's In Our Future?! YES!!!

2008-10-07T20:31:00.001-07:00

I just read an article on completely implantable Cochlear Implants. I am very excited to see what the future will hold for all CI's users. Just to think that my son will one day be able to hear in the pool, shower, while sleeping........ Never to be without sound is amazing. No more stress of being invited to pool parties! One day this will be available and hopefully soon......

http://www.citeulike.com/user/thenose/article/3318698

Progress Notes

2008-04-29T16:18:00.000-07:00

Hello All, It's been along time since my last post and I felt I should give an update. Jack has made the biggest gains this year and it is a miracle to us. Jack is finally getting good control over his speech and working on increasing his sentences. His ablitlty to be understood also has increased. He still has the diagnosis of Apraxia, but I have been told by his therapist that one day (hopefully soon) he will be free of his diagnosis.

As I have said in earlier posts, hearing is not Jack's main issue anymore. Yes, he is deaf and wears a cochlear implant, but he hears and is able to reproduce any sound as a hearing child with beautiful sound quality. Jack can hear me when he is upstairs or in the other room and we can talk back and forth and he has hearing friends that he communicates verbally with. The implant is a wonderful miracle, and that I can see hearing is not an issue is beyond what I could have ever imagined when Jack was first diagnosed.

We are still working hard with Jack, but Jack's progress this year has been the biggest of his life so far. Jack is a spirited young boy and able to do anything he sets his mind too. We are blessed to have such a wonderful caring team behind us and helping our son.

Harmony Processor

2007-06-05T09:02:00.000-07:00

Jack is now using the Harmony processor! We are very lucky that when he had a internal device failure (vender b) Advanced Bionics upgraded Jack to the Harmony processor for free, on both ears. We are all loving the new features of longer battery life. Jack can now go about 11 -12 hours without changing his batteries it is so nice to not have to think about that like we used to. Jack can now go to school all day without having to change his batteries and they are the SLIM size batteries too!! Also, having the light to let us know if something is wrong is nice too. Jack is not using the 120 programming yet, but I'm sure we will be upgrading to that when it is available. The new t-mic hook is something you should try also. It is much smaller than it used to be and is available now. It can be used on all processors.

Jack is also making such great progress in his speech, finally! We have found Jack's missing link into why he was so far behind in his expressive language. Getting him help with his apraxia has made a tremendous differnence. Jack is now starting to put 3-4 word sentences together and they are getting clearer by the day. A prayer has been answered!

Picture is from Jack at school last month.

Another Sucessful Surgery

2007-04-18T11:56:00.001-07:00

Yea, surgery is over and we are back home. Jack had his re-implantation yesterday and the surgery went great. The surgeon got full insertion again, and said it was "test book". Jack is at home and resting (trying to get him to rest) and doing great. These kids bounce back so fast it is unbelievable. Jack's turn on is scheduled for May 2nd....can't wait to get things back to normal again.

Jack is doing so well with his "newer" ear since his failure. I can't believe that he is caught up without doing much individual work with that ear. He has not missed a beat and has attending speech and school without any problems. I have notice a big difference in hearing with background noise, but other than that he has done great. I recommend bilateral implants to all families out there. I don't know what we would have done if Jack would have been completely off air for the last 3 weeks......

AB Failure after 3 Years

2007-03-29T09:26:00.000-07:00

After 3 years of hearing out of his right side my son has now lost that hearing due to a device failure. We just had it confirmed yesterday by his Audiologist. I thought that this might have been happening a little at a time for the last month or so because Jack would complain that it would go in and out.

Jack is scheduled for reimplantion in 2 weeks so I will post on the outcome. They said it will take Jack a couple of weeks to a month to get back to where he was again on that side.

On a positive note Jack will receive that upgraded Harmony processor which I am happy about. I thought we would be fighting insurance again soon for the upgrade, I'm glad I will not have to deal with that now.

Another thing I am thankful for is Jack is BILATERAL!!! What would I be doing now if he wasn't. He does not know sign language and I don't know how to deal with him any other way than though speech. I think about how Jack would be with a device failure and not hearing at all for a month!!! Jack really was upset when it first happened, but now is going about his day and not really missing a beat. He saw his SLP yesterday and actually had a great session and he will be going to school this afternoon. This is another reason why bilaterals are such a benefit....you have a backup!!! That makes it all worth it alone, not to mention the other incredible benefits!!!!!

Jack Turned 5

2007-03-08T12:15:00.000-08:00

Here is a picture of Jack blowing out his candles. I can't believe he is 5 already.....where has the time gone.

Jack Making Great Strides in Language!

2007-03-07T08:07:00.000-08:00

Wow it has just been a month since we have been seeing a speech pathologist for Jack's apraxia and it is paying off. Jack has really made great strides in his speech and his intelligibility. I feel a prayer has finally been answered!

His teacher even reported that she is really noticing a difference.

Jack has been so responsive to the new therapy that they have now diagnosed his apraxia as a mild case because he is moving along so rapidly.

Here is a cute picture of Jack at school. I will keep updating on Jack's progress.

What about Brian

2007-03-07T08:00:00.000-08:00

DISREGARD MY FIRST POST REGARDING THIS SHOW!!

I am so upset by where the What about Brian storyline has gone. Just recently a little 12 month old underwent implant surgery on the show. I really thought this story line was going to educate the public on the miracle we have all had in our lives, the Cochlear Implant. I just wrote a complaint to ABC and I would ask you all to do the same. http://www.abc.com/ I think they should give a service announcement at the end of the next show saying that the information that they gave in the last show was inaccurate.

Thank you!

Jack has Apraxia

2007-02-13T10:49:00.000-08:00

We have been in AVT since Jack has been 41/2 months. He received his CI at just under 2 years old and was bilateral implanted this past May. Jack's understanding has always been ahead of his verbal abilities and now we know why.

Jack was recently diagnosed with Verbal Apraxia. He has started seeing an Speech Pathologist that has worked with a lot of kids with Apraxia. She said she is impressed with what a good foundation Jack has and that is due to all the AV Therapy he has had over the years.

Jack has been to the speech pathologist only once and I have already notice a difference in a week. She gave us exercises to work on his "p" and now he is able to say the "p" and is even realizing when he switches it out with a "t" as he did before. I'm very excited that we have finally found the reason for all of Jack's struggles. I just wish we would have known sooner that this is what it actually has been all along.

We had been working with a Oral Motor Specialist since October and I think she has helped, but I really believe that this was not the main factor to him being unable to put things together. The Speech pathologist said that Jack has enough oral motor to make speech. I don't know if it has been all the work we have done since October, or if was never really a factor. He never had a eating issue and he was able to do tasks with his mouth when we asked. I really have felt like a piece of the puzzle has been missing and now it has been found.

I will keep you all up to date on Jack's progress.

What about Brian

2007-01-26T16:23:00.000-08:00

This past Monday on "What about Brian" there was an episode about a young couple making a decision on weather to implant their almost 12 month old daughter. This story line should be very interesting, especially for us with implanted kids. I'm so glad there is a show out there that is addressing this issue. The more information brought to the public the less harder it will be for our children to break free from any preconceived stereo types of the past. You can watch the episode from January 21st on http://www.abc.com/ This is definitely a story line to watch!!!

FYI, there is also another implant story on televison on "The Young and the Restless". An older boy who caught menengitis has recently been implanted. I don't watch it but I believe it is Dru's son. Check it out!

Happy New Year - Update on Jack

2007-01-17T12:18:00.001-08:00

Jack has now been implanted for almost 3 years with his first implant. He has had his bilateral implant for 7 1/2 months. I have noticed so much improvement on Jack's listening since his bi-lateral. He is so much more in tune with what is being said and picking up incidental speech like crazy. Yesterday, I was in the kitchen and Jack was in our office which is quite a distance away. I called his name and I heard him in the office say "what". It is amazing how well Jack is hearing....it's a miracle.

Jack is doing well with his overall understanding, but is still behind in his ability to use his words well. We had Jack evaluated by a oral motor specialist this past October and we found out that Jack is having some sensory issues with his mouth. We have been working on his oral motor issues since October and I have notice a difference in the last few weeks. He really is adding more words to form more complete sentences. He is still having troubles forming his B's and P's, but his M's are coming around. I know that this is why Jack has not progressed in his verbal abilities and I can't wait to see what this year is going to bring for him as we finally resolve this problem.

Jack is still attending AVT twice a week, oral motor once a week and Montessori Pre-school half day, everyday.

Happy New Year to all of you!

Jack in New Advanced Bionics Calendar

2007-01-05T20:42:00.000-08:00

Advanced Bionics has just issued it's 2007 calendar. Jack did make it in this years calendar, his picture is in February. It is a fantastic calendar and I look foward to seeing all the kids pictures and reading there comments. If you would like a copy of the calendar you can log onto Advanced Bionics web page and request one. On the side of this posting you will find a link to Advanced Bionics. Have a Happy New Year!!!!

Happy Thanksgiving

2006-11-27T17:17:00.000-08:00

We have so much to be thankful for this year. Jack is doing well in school and we had very positive comments at his parent-teacher conference. Jack's understanding is increasing so much he loves numbers and counting! Jack is still behind in his expressive communication, but with the amount he has in understanding it is only a matter of time when it will all come pouring out! Jack has a very "head strong" personallity which has never been to his advantange....hopefully it will be in the future! Here is a picture of Jack at school. Jack attends a montessori pre-school. I would highly recommend this type of schooling for any child.

CI- Circle

2006-10-26T11:48:00.000-07:00

I wanted to tell everyone about a great online support group for parents of children with cochlear implants. I have been a member for two years have gotten so much great advice from other parents that are going throught the same things that we are. I actually enjoy talking to other familys and giving my advice also. If you are a parent of a newly diagnosed child and would like to talk or get information please sign up for this yahoo group. You can register at yahoo groups - ci circle.

Jack and his "New" ear

2006-09-07T11:36:00.000-07:00

Update: Jack is now loving his "new" ear. He wears it alone and is understanding with it. He still likes his "old" ear best and really prefers to wear both, but he is able to tolerate his new ear alone and is pretty proud of himself. It's about time! Jack has not been too keen on working with his new ear alone until just this month and now we know that he has caught up with out strictly working with his new ear alone. Which is good news for all of you parents with headstrong kids who are unable to get there kids to tolerate working on the new ear!!! Now that he will tolerate his new ear we have been able to test how well he understands and can repeat what he is hearing.....and he really is close to being where his old ear is. He questions somethings, but very little, and he is very quick to repeat and respond.

I have noticed such a difference with him in noise. My husband races cars and we were at the racetrack last weekend and Jack was hearing as well and my hearing daughter. I and everyone around us were so impressed. We actually had a similar situation at Great American this summer. With all of the noise of the rides and screams from the people it did not seem to effect Jack's hearing. He was hearing so well even at a distance....the miracle of two ears! I am so thankful that we have been able to give my son the gift of hearing and now that he can hear with both ears it is icing on the cake. He is doing so well and I am so proud of him.

He is also doing well at school and his teacher said that she has noticed big changes in Jack since spring. He is more attentive and is working on a lot more advanced concepts!

I would recommend bilateral implants to any parent who is thinking of them for there child. It has made listening so much easier on Jack and on Mommy.....I don't have to repeat and he can hear greater distance and in noise! He seems to process sound faster also!

Start of the School Year!

2006-09-02T09:30:00.000-07:00

Where did the summer go......too fast! Anyway Jack has started his second year in pre-school. He is attending a mainstream montessori in our community. Jack is now attending 5 days a week for half day sessions. Last year he attending only 4 days a week. We are still in AVT and are attending twice a week for a hour session.

I was so nervous for Jack to start school this year because when we would talk about school he would just say "no" and get mad at me. I thought he would have a major meltdown, but actually he did weep a little but his teacher said he calmed down quickly and went right to work. I think now that he is bi-lateral I'm a little less concerned about his hearing this year. He is a really good listener (when he wants to listen..ha ha) and his understanding is increasing daily. He still has a way to go with him using his words, but knowing he is understanding concepts and hearing them I know they are getting in there he will talk more when he is ready!

Jack's teacher said she is shocked how much Jack has improved in the last 3 months and that he is verbalizing with her more and repeating. Jack is a very smart kid and I know he will do well. So on to another successful year! I will update on Jack and school throughout the year.

His teacher took some pictures of Jack's first day and attached that picture. I knew Jack's hair needed to be trimmed, but seeing these pictures made me get him in for a haircut that night....so excuse the hair!

P.S. Jack is also tolerating his "new" ear alone. We see his audiologist in two weeks and I will let you all know how that goes.

Update of Jack's Bi-lateral Progress

2006-07-06T13:21:00.000-07:00

Hello. It has been a while since my last posting, but I have had nothing to really add regarding Jack's progress and we have also been very busy. Jack's progress with his bi-lateral has been slow. He is defiantly hearing out of it, but has been fighting us "tooth and nail" regarding working with his "new" ear alone. He had an audiology appointment last Monday and we just tested his "old" ear because he was getting upset about taking his "old" ear off and testing his "new" ear.

I have discussed this situation with Jack's AVT and audiologist and they have both said not to push it and let Jack take the lead. He is wearing his new implant religiously all day, every day, so I know his nerve is being stimulated it is just obviously going to take Jack a little longer to get his "new" ear caught up. Oh well......what can I do? I don't want him to not wear it and I know he does like the "new" ear just not alone!

NOTE: Today he got a Pirates of the Caribbean rag to wear on his head from McDonald's and it was fitting small because of his two BTE implants. He asked me to help him put it back on and his "old" ear fell off as I was trying to tighten it. I think because he was only thinking about the rag and not his implant I started talking to him about pirates and the rag and if he needed help, ect. You know what he really is starting to understand.....Yeah!!! I asked him if he wanted help and he said yes with his "new" ear on and then I asked him if the rag was ok and he said ok. It's coming....yeah!!!!

We sure have a head-strong little pirate on our hands! LOL.....

New Family Pictures

2006-06-12T17:43:00.000-07:00

Bi-lateral is working

2006-06-12T17:30:00.000-07:00

Jack is now starting to understand with his bi-lateral. It has really been quite a fight to get him to even work with his new implant alone. I have been taking Jack's lead and letting him slowly work alone with his "new" ear. Today I got about 5 min with his "old" ear off and he understood and repeated the sounds I said. I used cards with an airplane, boat, and mouse. I put the cards on the table and did ahh (for airplane), puh, puh, puh (for boat), and eee (for mouse). He not only picked up the right card for the sound he repeated the sounds without hesitation! Finally were getting somewhere.....yeah!

We have only had one adjustment since his turn on date of May 23rd. He did not cooperate at his adjustment because he did not want to do any work with his "old" ear off. He is a very stubborn boy and he does not settle down easily when he was upset so his audiologist just turned everything up generally without any real information from Jack. Hopefully next adjustment things will be better and we will get more information. Otherwise, Jack is now starting to work with me and understand. Yeah!!!

Third day with two ears

2006-05-25T11:45:00.000-07:00

Today is Jack's third day with his new ear. He has been consistently wearing both of his implants all day, but he does not like to just wear the new one alone yet. He still has some swelling and the magnet seems to fall off easier, even after I added another magnet. Good news is when the new implant falls off he does put it back on most of the time.

Yesterday we had our first AVT apt. he fell asleep in the car which didn't help his mood and then when we got there we had him work alone with just his new ear. Well he cried half of the time...he was not a happy camper. We worked on ling sounds, listening tasks, and animals, things that are very familiar. He did listen to Lynn (avt) do ling sounds and put the bingo chips in the bucket to show that he was in fact hearing all of the sounds, but he was not able to repeat them. He still seems to be confused by what he is hearing and that he is not yet able to make out words. It is a little frustrating, I was hoping for him to at least respond to his name after the first day. After Jack's first CI surgery he was able to turn to his name that same evening. His hearing loss is symmetrical, his anatomy is perfect, and he has full insertion in both ears. I know Jack is going to do well with the new one, but I was hoping for a little more than we have gotten.
Last night before bed I did go over ling sounds with him and he did repeat "e" and "a", but for the rest of them he just moaned, he seems so confused by what he is hearing, but that he repeated any ling sounds is a good sign.

This week our homework is for Jack to spend 15 to 30 min a day wearing just the new implant alone. We are going to be reading books that are familiar, play with puzzles, playdough and activities that Jack really enjoys. I hope I don't get too much of a fight I know I will get some. He sure does love his first ear and does not understand yet the importance of "training" his new ear. Hopefully by next post I will have some improvements to report.

Jack hears with two ears!

2006-05-23T14:53:00.000-07:00

Well today was the day, Jack is officially hearing with two ears.....yeah! Jack did so well today, he was very go with the flow and took it all in stride. I was very nervous that he was not going to tolerate being without his old ear on and having them program the new one. Well he was not only programmed and it went well, but he walked out of his audiologist wearing both. He has not taken it off all day and he even has put it back on when it has fallen off. I know he is not understanding much out of that ear yet when his old ear was off at his appointment I was talking to him about a picture he was coloring and he was not responding to me. Normally he will talk with me about his picture and I was getting nothing back. Then when we put his old ear on he was talking to me again. I was told that this is normal and in a few day I will notice a difference. I think he is really going to catch up quickly his AVT is going to be pretty aggressive with his therapy and she thinks his new ear will catch up fast. I will keep you all informed of his progress as we go.

Today when we were getting ready to leave the audiologist Jack was sitting on my lap and I was talking to him and normally I have to adjust him so I am talking on his "good" side. Anyway, I realized that I didn't have to do this anymore and Jack can now hear on both sides.....it was a great feeling and it gave me a tingling feeling. I can't wait to see what tomorrow will bring!!!!

Jack is doing well in school

2006-05-22T21:25:00.000-07:00

As I have mentioned before Jack is attending a mainstream montessori preschool in our town. Today he got his first progress report and he is doing really well, better than I thought. I was surprised by all the new things Jack is learning at school and new concepts his teacher has been working on with Jack. I'm very impressed with this school and know that this is the place Jack belongs. I will be excited to see how his bilateral will help him in school next year, I'm sure it will help a lot. Two ears are better than one! Tomorrow Jack is getting turned on I'm a excited, but a little nervous. I hope Jack tolerates it well. We will see.......
The picture of Jack I copied off Jacks schools website I thought it was pretty cute. If you would like to know more about montessori schools and what they are about you can visit www.peacefulpathwaysmontessori.com There are several pictures of Jack on the site. He's a cutie and a smarty too.

Thank You!

2006-05-17T10:55:00.000-07:00

To all of those who have commented on this site, thank you. It is nice to get some feedback and to hear that others are getting some useful information from it, as that is what I intended. I will be posting in regards to Jack turn-on (of bi-lateral) next week. Stay tuned........

Again, thanks.

Julie

Jack's Picture on Advanced Bionics Website

2006-05-15T14:26:00.000-07:00

Check it out, Jack's cute mug is on the Advanced Bionics Website this month (May). I'm so proud of him. He's such a cool kid and so handsome (just like his dad)!

He has healed well since is bi-lateral surgery and doing great. He had very little pain after surgery and only needed pain medication for the day after. His incision looks great and the swelling has gone down. Now we are all anxiously awaiting turn on.....April 23rd.

I will keep you all posted.

Surgeries over and Jack is doing great!!!

2006-05-03T17:36:00.000-07:00

Hi!! Jack had surgery yesterday and is doing so well today, it's amazing. Jack was so brave the whole day, we are so proud of him. The day went really smooth from start to finish, Jack had a bit of a hard time in the recovery room (wanted his IV out), but other than that things were good. Dr. Young said that Jacks anatomy was perfect and the surgery was text book. She got full insertion of the electrodes and now we are anxiously awaiting his turn on. Dr. Young prescribed tylonol w/codeine and I have only given him one dose today and I really didn't need to then, but I thought he might sleep........yeah right! He has kept himself busy playing with his video games today and is really back to his old self. We have our follow-up appointment with Dr. Young on May 12th and his turn on date is May 23rd, we can't wait!

Getting Ready for Surgery Day

2006-04-27T08:27:00.000-07:00

Surgery Day, it is almost here. I'm not sure if we are ready....at all. For the first surgery it was a easy decision, but it seems different to me this time. Probably because Jack is hearing now and we can communicate with him and he can understand. Going bilateral is not going to be a BIG noticeable change, it will be very subtle ( I think). It is going to be great for Jack in noise and for location of where sound is coming from and I think he will notice an improvement for sure in these areas. It is just not the same decision as going from the first to the second. Anyway, enough of my mumbling. I am looking forward to the surgery being done.

Jack's was not so good when he had his first surgery, he woke up cranky and he was trying to rip his IV out and taking his head dressing off, kicking and screaming. If it was like that at 23 months what will it be like at 4!!!!! He is a lot stronger now and his will is just as strong if not stronger. The day after his first surgery he was a little groggy, but really back to normal. One thing that will help now is Jack can hear, so I will be able to talk to him after surgery, after the first surgery he was still not able to hear me so I could not comfort him with words. Can you imagine what that must have been like for him....Scary?! I guess I'm assuming that everything will be the same as it was before......I'll let you know. Another thing is he is in school now, so I'm really debating if I should send him to school the week after surgery? I'll have to wait and see.

So as the days get closer and closer I am getting more and more nervous. Understandably. I will keep you everyone posted. Please say a little prayer for our little guy. Thank you.

JACK WAS APPROVED FOR BI-LATERAL!!!

2006-03-24T12:16:00.000-08:00

YEAH!!! We got the letter yesterday confirming that Jack indeed is approved for his bi-lateral surgery. We have a date already set up, it will be May 2nd. We are so excited and could not come at a better time. Jack will get it right before summer and have all summer to acclimate to it before school starts in the fall.

Now that we have approval I'm dreading surgery. It has been something that I have been able to put off until now. Now that it is official it has brought everything to reality. I know Jack will do well, but I don't know if I will. Jack sailed throughout the first surgery with flying colors and we have no reason to believe this won't be the same.

Anyway, thank you to all of you with your kinds words and prayers for Jack. They worked!!!!

I thought I'd add this picture. Jack is wearing his spiderman mask with web spray, it was one of his birthday presents. He sure is a cutie pie.

Jack's CI involved in the AB Recall

2006-03-22T10:46:00.000-08:00

I was just informed yesterday, that in fact, Jack's CI was involved in the Advanced Bionics recall.

Advanced Bionics announced two weeks ago that they were recalling all unimplanted devices that were manufactured for them by Company B. They have two companies that manufacture for them, Company A and Company B. I guess they stopped having Company B manufacture for them anymore due to moisture problems in the internal 90K device. Jack was implanted with the 90k device two years ago and Jack's implant was also manufactured by Company B for AB.

Jack Audiologist mentioned that over 100 children were implanted with the 90k device at Children's Memorial and a little over 50 were implanted with the 90k devices made by Company B for AB. Jack was one of those unlucky ones. She said his device only has a 3.5% chance that it will fail and that they have had no failures due to moisture issues from any children that have been implanted with the "B" devices. She also said that AB said that if the device had been implanted over 200 days your chance of having a moisture related failure goes down. So that means hopefully Jack will be in the clear. As of today we have not had any issues and it has been over 200 days.

On another note, we are still awaiting approval for Jack bi-lateral. Hopefully it will be soon. It sounds like it may be a month before we get a decision.

If you have any more questions regarding the Advance Bionics recall visit there website. You can find a link to it in this blog listed under "links". Have a great day!!!

Jack's 4th Birthday!

2006-03-16T15:40:00.001-08:00

Here are some shots of Jack's 4th Birthday. Cool Cake, huh. Jack is cute dressed in his pirate patch and earring.....it was pirate themed.

Jack Hearing Tested Today

2006-03-06T14:09:00.000-08:00

Jack had his hearing tested today. He tested within "normal" hearing limits. Normal limits of hearing is anywhere from 0 to 20db. His SAT (speech awareness threshold, when he first starts to hear) was 15db today. He has tested in the past at turning to his name at 10db, but they didn't say his name today and just used "narrow band noise". I think he is more tuned into speech then into "narrow band noise" and I'm sure he would test at 10db if they would have used speech instead. Anyway, we are very happy with the testing and he is doing well and he needed no adjustments to his program. Infact, I could barely hear some of the sounds, my daughter moving around in her chair was louder then some of the sound out of the speaker. It is truly amazing how soft 15 db is and my son can hear at that soft of a level!!!

It was pretty cute today Kerry his audiologist kept trying to trick him with the testing and would pause a long time to see if he was giving false positives. Anyway, he would just sit and look at her and shrug his shoulders and say "nothing". It was very cute!!!

We are still in the process of getting insurance approval for a second implant. We are on our third appeal with Blue Cross Blue Shield of Illinois. We are working with an attorney at the Let them Hear Foundation and they have not lost one appeal yet. I just got word yesterday they they submitted the appeal last week. Keep your fingers crossed for us, we don't want Jack's case to be their first appeal they loose. We will keep you posted on the outcome. For more infomation on appealing for yourself www.letthemhear.org

Jacks School Update

2006-03-06T13:45:00.000-08:00

Sorry, I have not updated in a while. We have been so busy with Jack in school 4 days a week and AVT the other day and my daughter, Maddie has ballet/jazz on Saturday. We also took a well needed vacation to Colorado, it was wonderful. We got a way without the kids, it was nice, but we did miss the little buggers.

Jack is doing GREAT in school. His AVT went in this past month and observed and was very impressed with the teacher and the school. I think Montessori school is great for all kids, I wish I would have known more about it when my daughter started school. I would have sent her there for sure. She is in first grade and doing really well and feel no need to change anything now.

Anyway, Jack has made many friends and is interacting and participating in class. He is getting more and more vocal in class (I'm sure one of the main reasons is he is getting more comfortable there). The teacher has started using his FM system during circle time and has noticed a big difference in his attention. After the first day that she used it I asked her how it went and she said he was so tuned in and participating that it gave her "goose bumps". His teacher is incredible and so tuned in to him and all the kids. The class size is small, about 7 kids, and she gets a lot of one-on-one and really gets to know each child well. She is so sweet and kind and truly loves children. We lucked out!!!

Also, on February 27th Jack turned 4 years old. I can't believe how quickly he is growing, it just seems like it was just his first birthday. He had a great party.....a pirate themed party!! He is into "playmoblie" now and loves the pirate set. Anyway it was great and he got spoiled!! I will be downloading pictures from his party soon.

Gotta go....Jack got a X-Box for his birthday and is totally addicted. I think its time to pull him off.

Jack Started School

2006-02-02T15:46:00.000-08:00

Jack started school!!! He is attending a mainstream Montessori school 4 days a week. The teacher said that he did really well for his first day. They have a Gecko and he loved watching it and he kept hearing the crickets from across the room. He played with puzzles and made homemade bubbles. The teacher is so warm, I know Jack is really going to do well with her as his teacher.

When I picked Jack up from his second day of school we got another great report. He made a couple of new friends and played the "knock-knock" game. He went behind the children and said "knock-knock" to them. He was all smiles when he got out of school. He really loves it there!!!!

I will keep you all updated on his progress.

Cat With Cochlear Implant

2006-01-08T09:37:00.000-08:00

Wow! What will they come up with next? Check this out........
http://www.bme.jhu.edu/labs/ryugo/pdfs/kretzmer/etal/2004.pdf

Going to the Movies

2006-01-04T15:24:00.000-08:00

Hello All,

Thought I would tell you this cute story. We took the kids to see Narnia this past week. Actually, I took the kids once and they loved it so much we went again and took Daddy. Well Jack sat glued the whole time (both times). I just happended to look over at Jack at the part where the lion comes back to life and the kids get on his back. The lion says to the kids "cover your ears this is going to be loud" and then he roars. I looked at Jack as the lion said this and Jack was covering his ears and got a pinched look on his face like he thought it was going to be loud. How cute is that!!

This really impressed me because he is obviously really hearing well at the movies. I know this is a concern for some children with implants, but I think Jack really does hear well watching TV and movies. He repeats a lot of what he hears when he watches TV too.

Jack is "Darth Vader" for Christmas

2005-12-29T13:55:00.000-08:00

Christmas was great!! Jack and Maddie got a lot of great presents from everyone. Jack got a lot of Star Wars stuff. His favorite was a Darth Vader Mask with a cape and light saber. Before Christmas he would ask me to tie his blanket around his shoulders and would then walk around the house making the Darth Vader breathing noises. Now he has buttons on the mask that makes breathing noises and also says sayings from the movie like "you don't know the power of the dark side". On our way to my sister-in-laws house on Christmas Jack was in the backseat with the mask and pushing the buttons over and over again. My daughter got mad and told Jack to stop pushing the buttons. I told her that on Christmas she should not get annoyed, but to be happy that Jack even wanted to push the buttons because if he didn't hear he would not have any use for the buttons because he could not hear them. I'm not sure she understood what I was trying to say because she was still upset with him and she is only six. It made me think though that we are lucky to be living in a time that allows my son to hear!!

Today I took some pictures of Jack in his mask......what a ham!!!

Bi-lateral Denial

2005-12-23T20:55:00.000-08:00

We just got the letter today, Jack was denied for his bilateral surgery. Nice Christmas Present?! We have Blue Cross and Blue Shield of Illinois. Many people with BCBS are having problems with getting bilaterals approved. It just boggles my mind, especially when medicare and medicade are now covering them and several other insurance companies are also. We have contacted an Attorney who will be appealing on our behalf. He has been very successful in getting bilateral approved after the first appeal. Keep your fingers crossed for us!!! We will keep you all informed as we move forward in this process.

Have a Merry Christmas!!!

Jack is really making progress!!!

2005-12-16T12:00:00.000-08:00

Hello. Jack had AVT today and did great. Jack is really picking up new words and understanding the meaning a lot faster than he ever has. The new words we have been working on the last 2 weeks (Christmas theme) he is understanding all of them....it's amazing!!! Lynn our AV Therapist told me that she is so excited for this next year because Jack is just going to take off. I really know this for a fact to, I can see it in his eyes things are really clicking lately.

A cute story: I took the kids to get their hair cut last night and they give out suckers to the kids. Jack wanted a sucker and I told him he had to ask for one. He said, "sucker please" and also said "thank you" to the woman after she gave him one. He does not lick suckers, he bites them and they last about a whole 2 seconds. After the first sucker he said to me "one more". I told him he had to go ask the lady for another. He went up to the counter and she did not see him. He looked at me like what should I do. I told him to ask her for another sucker. So he started pounding on the counter and shouts "hey you". He has never said "hey you" be for in his life. I thought boy this kid is picking up random things without being taught. What was even better is the women understood everything he had said and even said how cute he was!!! Well this made my night. My son is finally communicating with strangers and getting his point across!!!

Today on our way back from taking my daughter to school I heard Jack in the back of the car saying "high five". He repeated this a couple of times and I thought what is he saying high five to....the building? I looked back at him and he said, "look" and pointed to a crossing sign. The kind that tell you when it is ok to cross the street or when to stop. Well the signal was a red hand and he was trying to give it a high five!? The thoughts of a three year old.....ya gotta love it.

Bi-lateral approved after news cast in N.Y.

2005-12-10T07:14:00.000-08:00

Hello, I thought I would share this information with all who are visiting Jack's blog. Exciting news for a little boy in New York. His insurance company denied his bi-lateral implant, but when the news stepped in their denial was turned into an approval!!! Congratulations to them. We still have not received a decision from our insurance company yet, we have Blue Cross Blue Shield of Illinois. I have heard they are one of the hardest companies to get an approval from. I don't understand this at all! There is so much research out there to support the benefit of going bi-lateral. I guess it's all a money thing. They are trying to get out of paying for as long as they can, but they won't be able to keep denying much longer. With so many families choosing this for their children, insurance companies will be forced to pay attention to the improvements these kids are making. They will be forced to pay!!! It is our job as parents of this generation to fight for the next generation of implant candidates. Please see link below for transcripts from news segment on the boy in New York. http://abclocal.go.com/wabc/story?section=7on_your_side&id=3711820

Jack - Mr. January in Advanced Bionics 2006 Calendar

2005-12-09T14:08:00.000-08:00

Yes, here I am again. Proud Mom. Jack made the 2006 Advanced Bionics Calendar. You can all find "Jack Robbins" in January. I know you all will be able to order soon. I was told 2 weeks?!

CHRISTMAS IS ALMOST HERE!!

2005-12-09T13:48:00.000-08:00

Hello All,
I'm really looking forward to Christmas this year. Jack remembers so much from last year, it's amazing. We went by a gas station two weeks ago and he saw an inflatable Santa. He pointed and said to me "look, ho, ho, ho". I had not spoke of Santa since last year! I was blown away. Jack is really into Star Wars right now and I'm sure this will make for a complete Star Wars Christmas. My sister-in-law found a Darth Vader Mr. Potato Head?! Sounds cute....I know he will love it. My daughter Maddie who is 6 is on pins and needles. She has been such a great teacher to Jack. It has been so nice to watch them play today. They have been getting along so well (knock on wood). Jack as usual is copying her and repeating everything she says. He has been such a parrot lately. She will be talking to me and he will be standing next to her and trying to repeat her sentence. It's adorable!!! I am so fortunate to have my kids....they are such a joy.....at least today!!!!

Jack's Story

2005-12-06T11:14:00.000-08:00

Jack was born on February 27, 2002. We were so excited to have a healthy little boy. We never expected in a million years that he would fail his newborn hearing screen. We were told not to worry, that it was probably fluid in his ears and to have him retested at his 6 week check-up. We didn't worry at all. We had no family history of deafness and our daughter at the time was 2 and very much hearing. We assumed all would be fine.....boy were we wrong.

At 6 weeks he failed again. The Audiologist didn't give us results, but her face said it all. She told us that the test was inconclusive and referred us to a ENT to discuss the results. We saw the ENT the following day and he confirmed our greatest fear. Our son was Deaf!!! I still have a problem saying those words to this day. He told us our son was so deaf that he could not even hear a lawn mower if he was standing next to it. This doctor was very abrupt and "matter of fact" and to this day I hate him for the manner in which he told us. The one positive thing I can say about him is that he referred us to a wonderful doctor named Nancy Young at Children's Memorial Hospital in Chicago. We made an appointment and got in to see her the following week.

Dr. Young explained what hearing loss was and the type that Jack had. She requested to rerun all of Jack's tests herself and to have another ABR done. She also put a request in for loaner hearing aids for Jack to try. Jack's ABR results showed him to be severe to profoundly deaf. Dr. Young had Jack fitted with hearing aids that week.

Jack received his hearing aids at 3 1/2 months. It was so hard to see my baby with hearing aids on. It really hit home when he was fitted, I wanted to cry the whole visit and was shaking like a leaf when I had to put the ear molds in his little ears for the first time. His ears were so small and the hearing aids were so big. Of course, we all know the feedback issues for a child with hearing aids. We got feedback constantly. I can remember driving and they would be squealing and I could not do anything about it but turn up the stereo. Luckily, my daughter soon learned to help out her baby brother and push them back in.

The next step was deciding what type of teaching methods we wanted to use. With so many choices we decided to go with Auditory Verbal Therapy (AVT). I have to say choosing this type of therapy was one of the easiest choices we have made in our lives! AVT seemed so natural and the outcomes of these children are enormous. We wanted our son to be fully mainstreamed and be able to communicate with family and friends and to lead a "normal" life.

Jack started seeing Lynn Wood, a wonderful Auditory Verbal Therapist at 4 months old. She has been my rock through our journey and I don't know where we would be without her. With AVT the main task is to narrate everything. Explain everything you are doing in your day, what he is playing with, what he is eating, doing crafts, reading books, singing songs, etc. Everything I would have done with my daughter I did with Jack, but with more narration. We talked, and talked, and talked some more. To this day we are still talking.....nonstop.

Jack, we believe had a fluctuating loss which made it hard to tell how much he was getting from his hearing aids. One day he would turn to his name, the next day I would have to touch him to get his attention. This time was very frustrating for us and without experience in raising a child with hearing loss we didn't know what to expect. We later learned this was not normal and that he should be turning to his name without our tapping or visual cues.

At 19 months we decided to have Jack screened for a Cochlear Implant (CI). Believe me, this was not a choice I wanted to make. Thinking of putting my son through surgery scared me to death!!! We were told after his first screening with the CI Audiologist, he was indeed a candidate. We soon had an appointment to see Dr. Young again. She discussed the surgery and eased our minds on what the surgery entailed and what a benefit a CI would be for Jack. We received insurance approval within 4 weeks and soon had our surgery date.

Jack was implanted on January 17, 2004. We choose Advanced Bionics due to the fact that Jack was still taking off his hearing aids and throwing them. We figured the microphone on his head and not on his ear would be the best choice. Another reason was they had just approved the HiResolution programming and we wanted the latest and the greatest for our son. Surgery went off without a hitch and Jack handled everything well. He was upset by the head dressing and the bands to keep his arms straight with the IV, but other than that he was fine. We went home that same day.

The next day Jack did well. He was a little groggy, but other than that he was back to his normal "play hard" self. His incision didn't look as bad as I expected and it healed very quickly. I have to tell you I was worried about the way his ear looked. It looked like the doctor had sewn it on wrong because it was sticking out like "yoda". I quickly called Dr. Young's nurse and was told it was normal and when the swelling went down his ear would look normal again. Guess what......it did!!!

On February 17th the day was finally here, ACTIVATION DAY!!! We were so excited and were hoping to see a big reaction at turn on, we didn't. Of course we were told not to expect much, but of course we hoped for more. I have to say we went home knowing he was hearing because Advanced Bionics has software that lets you know if the auditory nerve is being stimulated, and it showed his was. That day Jack still seemed really unimpressed by his new sense of hearing. Later in the evening my husband called Jack's name with his back turned and Jack turned to him. We were told not to expect this for a few weeks, but he did it several times that evening. We knew then and there this was the start of a new life for our son and that we had made the right decision.

After activation Jack really started to make progress in AVT. Finally, he was repeating ling sounds after 3 months of activation (he never did any of them only Ahh with hearing aids). I remember my sister and I were having a garage sale and a man was walking a dog past her house and Jack pointed at the dog and said "oof, oof". It was only 4 months post activation and he was finally communicating. Jack soon started saying animal sounds and simple words like up, hot, hi, and bye.

Jack has now been implanted for almost 2 years now. He is saying about 170 words and is starting to repeat everything. His voice quality is beautiful and does not have a "deaf" sounding voice. He really has made a lot of progress since last year. Sometimes it feels slow, but just when we start to get down he makes a big jump. He really has a stubborn streak that really hinders him from making the progress that he could. He has a lot of receptive language, but is still not age appropriate in expressive. We are still in AVT and attend twice a week. Jack will be starting pre-school this January and we are nervously awaiting that. We are excited for the future and know Jack is going to be very successful. He has such a fun personality and a love for life. With the great team we have behind us we know Jack will do well and the sky's the limit for what ever Jack wants for himself. Jack is a joy in all of our lives and has taught us more than we could ever teach him.

We are now in the process of getting insurance approval for a bi-lateral implant. We are expecting a denial, but are going to put up a fight!! Studies are proving that two implants are indeed better than one, especially in noise. With Jack still being so young we are sure Jack will get full benefit from a second imlant. For more information on Bi-lateral implants please click link found below. www.medel.com/ENG/INT/30_Advanced_topics/999_bilat.asp

P.S. Jack has been watching Polar Express. At the beginning of the movie the conductor says, "all aboard". I heard Jack say to himself "all aboard". He then came and got me and pointed to the T.V. and said "all aboard" very excitedly. At moments like this it reminds me of how lucky we are to be living in a time that allows my son to hear! We are very blessed.

Family Photos

2005-12-06T10:47:00.000-08:00