My last post for the year....

Wow! This year has gone by way to fast just like that. This year was a difficult one for me but I have so much hope for the new year! I cant wait to graduate in the Fall, continue to stay strong and fight this illness. Most importantly, get re implanted so I can enjoy all the sounds life has to offer and loose weight.

Be safe out there tonight!!!  I wanted to wish you all

New Sounds during Christmas

This was my first Christmas with my Cochlear Implant. What an amazing Experience! Christmas Eve there was about forty people here. Lots of kids screaming and opening up gifts, Christmas music, family members having conversations. It was LOUD! I had to come up stairs to my room to change my battery at one point and stil heard all the noise from downstairs the first level. Hearing my niece rip open many of her gifts on Christmas day was amazing. Ripping Christmas paper is very noisy! I was able to have a few conversations with ease and not being able to rely on lip reading. I was able to hold a conversation even with so much noise in the background. My Implant did shut off during the day while I was cleaning getting ready on Christmas Eve. Then the implant just made the sounds that I was used to so I just ignore it. Christmas Day my implant was okay until I took it off for a break for about twenty minutes. I turned it back on then I just took it off because I knew it wasn't going to work for the rest of the night.  Having the implant has been a great experience. My cousin started to talk to me and said's " You dont even have to look at me anymore." I guess I got into the habit of not looking at people when talking to them. She asked if I shower and go to sleep with the implant and I told her no. This was the first time some of the family members seen my implant.

I am nervous for Jan 3rd to see my surgeon to setup a surgery date for re implantation! I lucked out on Christmas this year, honestly I didn't think I was going to be able to hear because of the situation.


Hope you all had a wonderful holiday!!!

Happy Holidays

& Happy New Year!!

The Final Results.....

After all these months hearing all these crazy sounds Im not supposed to be hearing and my implant shutting off here are the final results. Two days ago my Audiologist called me. I have been emailing her since the last time I saw her. Cochlear and my Audiologist decided they are going to call my implant a failure. So basically I have to get re implanted. I had to schedule and appointment with my surgeon to set up a surgery date. I'm scheduled to see him on January 3rd, 2012.  Honestly, I cant believe this is happening but unfortunately there was a recall. Bottom line I NEED TO HEAR. I will be re implanted with the freedom and I will keep my N5 processor.  At this moment.. there is so much going through my mind the only worry is an " Infection". The pain is not on my mind since I have a high tolerance of pain and I will be given medication. Right now this is basically a WAITING GAME...  Cochlear called me yesterday and told me that I dont not need to worry about insurance issues. Cochlear is covering the cost of this entire procedure and even co-pays. Basically cochlear will be paying my insurance company. So thats a good thing now I dont have to worry about this.

Today was a good day, I cleaned most of the day and watched my niece and heard some new sounds. I heard the Christmas clock which is in my bathroom  while I was in the den which is two rooms away. So cool! I tried to figure out where the sound was coming from then my niece showed me. I also didn't realize   wrapping gifts makes so much noise. Ripping tape off the tape dispenser and cutting the wrapping paper with scissors. Soooo Cool. Then I was in Silence.... for about 2 hours. Then my implant came back on as I watched my niece dance to music. 

Tomorrow is Christmas Eve. Time is going by so quickly. I am excited for tomorrow since this will be my First Christmas with my Implant. Even though it shuts off most of the time I still wear my processor because I cannot handle being isolated and I feel like I " Fit In" when I hear.

I will be back tomorrow If I can. Hoping I hear some " New Sounds"

Hearing the Unheard

This is a great video.  You should watch this. It is captioned.

Cochlear Identifies cause of Failure

CHECK THIS OUT!!! This is from Today's WallStreet Journal.

 Click on link: Cochlear Identifies cause of Failure


 Dec. 20, 2011, 2:02 a.m. EST Cochlear identifies cause of implant failures Sponsored: TheStreet Raymond James' Best Stock Picks May Double in 2012 --

 Cochlear identifies cause of implant failures that led to recall -- Understanding forms basis for plan to return Nucleus CI500 series to market -- 1.9% of series devices have failed (Adds share closing price in third paragraph, CFO comments in fifth and sixth paragraphs, background in fourth and seventh paragraphs) MELBOURNE (MarketWatch) -- Cochlear Ltd. said Tuesday hearing implant failures that led to the voluntary recall of its un implanted Nucleus CI500 series were caused by microcracks in a joint that let water into the device. "This understanding of the root cause now forms the basis of the plan for the return of the Nucleus CI500 series implant to market," Chief Executive Chris Roberts said in a letter to clinicians filed with the Australian Securities Exchange. Shares in Cochlear, the world's biggest maker of bionic ears, leapt on the news, closing up 16%. Cochlear recalled its Nucleus CI500 range, which Cochlear says is the world's slimmest titanium hearing implant, in September after an unexplained number of failures. Chief Financial Officer Neville Mitchell told Dow Jones Newswires there was no time line "at this stage" for the return of the device to the market. "What we'll need to do is look at the design and then test that design again and then put it through regulatory approvals and market it after that," he said. Cochlear has made a provision of A$130 million-A$150 million to cover the cost of the recall. Roberts said in the letter about 1.9% of registered CI500 series devices had failed, but there were fewer reported failures in November 2011 than in October 2011. There are about 30,000 registered CI500 series devices around the world. He said the company's investigation into the failures pointed to unexpected variations in the manufacturing process resulting in a limited number of implants being more susceptible to developing microcracks. "These microcracks allow water molecules to enter the implant resulting in the malfunction of specific electronic components," Roberts said.


Update on the Nucleus 5      this is from Nov 11, 2011  


and this last letter is from Cochlear sent to all the Clinics...



Letter From Cochlear

Santa Signs

A friend sent me this i love it. Its new!

Bad News.......

Today I met with 3 cochlear reps that came from Colorado and two audiologist. My audiologist and another audiologist from my clinic. Cochlear kept asking me a lot of questions.. when the " ch ch ch" sound started how often does the implant just shut " on and off" etc. Then the other gentlemen did the integrity test. This time the test was done a little bit different. He put all the equipment on me. He turned it on and I wasn't suppose to be hearing this noise. I then had to listen to "WHITE NOISE" from a clock then take my implant off every few seconds, then put it back on my head.To see if this makes a difference and it did sometimes. It took over an hour to do this testing and nothing showed up on the integrity test. What another rep did was put the same program on but this program instead has alot more power then the implant. So another words I will be using more power and the batteries will most likely die faster. The entire time during the test I used the Freedom. Then finally I was able to use my N5. This new program is on my N5 and I have to ship back my freedom processor I no longer need it. I will continuing using the N5 now instead of the freedom since it was just a loaner. I was told that my device is failing. I was also told that there are few more people that had to get re implanted because of the re call and they are still trying to figure out why there is a recall. I was also told these noises are similar to the device failing especially the on and off. This man believes the sound will come back and if thats the case heres what I have to do.

I have to use the rechargeable batteries only. Then let say im on program 1 and I hear the sounds or whatever happens I have to take the implant off then get out my remote and switch it to program 2 to see if made a difference. If this doesn't I have to call my audiologist immediately. That means the implant is failing.... I also have to keep track of the remote " What does the remote say?" does it give me an error, des it show off or another issue. I only have 1 week to determine all this nothing later than 1 week I have to report back to my audiologist and cochlear..

This new program is so loud and its on volume 0.

I am frustrated and a bit upset because he did say it probably will come back. I am just really nervous because I dont want surgery...


Its a waiting game for now......

Keith Nolan- Deaf in the Military

This video is subtitled because Keith is profoundly deaf and communicates using ASL (American Sign Language). Keith wanted to join the military but was told he "COULDN'T" because he was Deaf. Find out what happens.


What is your reaction to this video??? I would love to hear your opinions.







Tomorrow is the day I go into NYC to talk to meet with COCHLEAR once again. Im really nervous...



I will be back tomorrow.

Deaf choir sings Christmas Carols

Wow this is amazing you have got to watch this!

Deaf choir sings Christmas Carols

My processor is not working. The processor was fine all day. I have been in silence for two hours. My backup is not working either. I am very stressed out about this. To be continued.... I will be back on Thursday with the update.

This Holiday Season

For those of you with hearing loss you all know how hard it is to communicate with family and friends during the holiday season. My entire life it has been difficult for me. I have always dreaded this because I just could never understand what was being said. During the Holidays there is so much music and noise going on. Here at my house we celebrate Christmas Eve around 50 people come to my house which is mostly family. Christmas is my favorite time of the year however this will be my first Christmas with my Cochlear Implant. Having my cochlear implant changed my life. I rely so much on my cochlear implant the moment I wake up and go to sleep. I wonder what this Christmas is going to be like. I heard a few new christmas songs I wasn't able to pick up on when I used my hearing aids. I am excited for Christmas this year! I cant wait to share all the new sounds with you all.

Yesterday, I found out something new about myself that with my cochlear Implant I rely more on my hearing more then visual cues. I did very well on this hearing part instead of the visual game. I was surprised but I didn't realize how much I am really hearing with my CI. This was interesting because I was always a visual learner because I couldn't HEAR well enough.

Here are Tips to help you Communicate better during this Holiday Season!

7 Tips for Better Communication- by Arlene Romoff

CI Update: So much has been happening with it. I am keeping a log. I go back into NYC thursday Dec 15th to meet once again with a cochlear rep. Hoping they can fix this problem. Same problem everyday " ch ch ch" shuts on and off some days I wont even have sound. I have to deal with it for now because I have to much going on with college and I cant get there sooner. I am hanging in there for now. There are days its very frustrating and overwhelming and I know Cochlear and my Audiologist are trying hard to fix it. Now that we know the freedom does the same thing my N5 does I have to do more testing on Thursday. To be continued...

Continental Airlines now has Closed Captioning

Hi Readers:

Today, I found out that Continental Airlines now has Closed Captioning on the TV's. How great is that? Now all we have to do is to get other Airlines to accommodate us with closed captioning, especially Jet Blue. In October when my family and I went to florida there was no captioning on the TV's. I wasn't surprised to that there wasn't any captions. I think its ridiculous though because so many of us with hearing loss struggle and cannot live without captioning.

Closed Captioning Now Available for Live Television OnBoard Continental Airlines

Melbourne,Fla./PRNewswire/--LiveTV has announced that, for the first time in history of inflight entertainment, closed captioning is now available for live television content onboard an aircraft. LiveTV says that this system enhancement is a major step forward in delivering the excitement of inflight entertainment to those passengers with hearing loss and continues to drive towards LiveTV's goal of a fully realized " At Home in the Air" experience for each of it's end-users. The closed captioning enhancement will initially be offered to passengers on all LTV3-equipped Boeing 737NG aircraft operated by Continental Airlines, a subsidiary of United Continental Holdings, thereby putting each customer in control of the feature while interacting with the 100+ channels of DirectTV- provided satellite television available onboard. Continental will be the first airline in the world to provide this feature to its passengers.

NEW MTA PROJECT MAKES SUBWAY EASIER FOR HARD OF HEARING

Check this out! I have noticed more and more subways in the city have Telecoil.



MTA Project makes subway easier for hearing impaired


The video itself DOES NOT have captions but below the video has the entire transcript.




Hugs,
Danielle

The nightmare continues....

Friday, I started using the Freedom processor since my N5 cochlear Implant hasn't been working well. Saturday all day the processor was fine and all of a sudden I hear the " ch ch ch" and then it powered off. For a second I thought I was dreaming.  All day this happened and the crazy sound just wouldn't go away. Then the silence ( off) then right back on within seconds happened most of the night. I started to get upset but tried to remain positive as my audiologist is doing everything she can to figure this out and so is Cochlear.  GOD she problem hates me although she keeps apologizing. It is strange this is happening with the FREEDOM. Sunday I woke up around 11am to put up the christmas tree with my niece. The processor was fine for about two hours and then my voice was disappearing and I wasn't able to understand what everyone is saying.I was missing out most of the time. The processor kept turning off. This keeps getting worst.

I just cant believe this is happening. I emailed my audiologist on Monday morning and even called her the moment she walked in the door. She then emailed me to say that this has been happening to long we need to get to the bottom of this but to keep wearing the processor for now. My audiologist emailed me back and said Cochlear will be coming on December 14th,2011, again so I will have to race back into the city. Cochlear is going to have to do some more testing or something else. Apparently when I saw them a month ago the integrity test was normal nothing showed up.

With that being said I am trying to remain calm as finals are happening in college and Christmas which is my favorite holiday. I really cannot wait for Christmas this will be the first Christmas hearing all these new sounds. On Monday the processor was fine then at 2pm it started to act up again in college.The crackly noises( ch ch ch ch ch) and hearing echos while my professor is talking when I know this is not his voice and my voice sounded awful. I was  also talking and signing to my interpreter explaining to her my implant is not working properly still.  I sounded like a robot and echo. Thats a new one because I heard myself talk three times. So I had to take the processor off at 2pm because I just couldn't take it anymore. I was about to walk out of class but didn't.  This is just frustrating....  I came home around 6pm and immediately took off the processor because nothing has changed in the last few hours. I gave up and just wore my hearing aid in my Left ear.

What a difference from going back to my hearing aid because I need " SOMETHING" to help me get by at this point. Im supposed to be wearing my aid in my Left ear all the time but I dont. It was amazing that I missed almost everything that was being said with my hearing aid on which isn't unusual.  I havent worn the hearing aid in so long I forgot all about that. Then I realized I cannot hear myself TALK with my hearing aid in my ear because a friend of mine on the phone said " WHY ARE YOU SCREAMING." Then I started to get emotional because I then realized I cannot live without MY COCHLEAR IMPLANT. The cochlear Implant has helped me so much the past 10months I been activated.  I cant believe its already 10 MONTHS since activation.  The implant is something I rely on the moment I wake up. Today I am going to put on the implant to see how it is.. if it starts making noises I am going to leave it home and wear my hearing aid in my left ear. It does suck but I dont know what else to do at this point. The more I hear those crazy sounds and my voice changing the more im going to get upset and I cannot be stressed when I have so much to do for school.




**Please Note** This is my personal experience. Technology is Technology things happen. Dont let this Discourage you please. I am writing here on my personal blog to vent and also share my experience with all of you. This doesn't mean you will have this problem or shouldn't get a cochlear implant. You do what's best for you. I wouldn't trade it for anything in this world. Because my implant is the best thing that ever happened to me. I finally fit in. My audiologist is an amazing understanding individual and Cochlear is working so hard to get this resolved.



To be continued.....




Hugs,
Danielle

Freedom Processor Trial

This morning, I went to NYC to see my audiologist because the Freedom processor I received in the mail " wasn't working". There was no sound. Turns out the processor that was sent from cochlear was never mapped. That was why I couldn't hear anything and started to panic.

 Today my audiologist programmed a new "mapp" that is slightly different. I also had to listen to high pitch beeps/tones, say some words with the freedom processor. My audiologist wants me to use the Freedom for one month  to see if there is any difference. I will ONLY be using my Nucleus 5  for Music and for the Noise program since I dont have that option with the freedom. I have to keep a log of how this freedom is working the entire month. I will be going back on Dec 30th for a followup.  If the freedom works then she will have to tell Cochlear and we will go from there. Right now its just a waiting game. I hope that I will be able to go back to my N5. It's just not the same. The freedom is pretty heavy, falls off my ear with the ear mold, runs on 3 batteries which Im not used to. I also miss my remote more than anything. I CAN HEAR SOUND!!!  I am going to stick it out and be thankful I CAN HEAR! At this point thats all that matters to me is being able to HEAR.  This just has been frustrating.


Next week I will be back to tell you how the freedom is working...


In the meantime I found one of Gallaudet University's " Quiet Campus" episode. The video is short and captioned.






Hugs,
Danielle

Received the Freedom Processor today

I received the freedom processor in the mail today. I put it all together coil, cable etc. A friend showed me how the freedom processor since she is a bilateral freedom user. I only have P1 on the processor and there was NO SOUND. I was suppose to have all  programs P1-P4.  She even tried it NO SOUND. I left a message for my audiologist who I will be seeing Friday. Maybe it was never mapped. I dont know why there is NO SOUND. I am a bit worried. The point of getting the freedom was to try it out to see if it works....

I just dont get it. I called cochlear and they said " Wait for your audiologist."

In the meantime... My N5 is working and has been fine for two days. All of this is just STRANGE!

What a difference which each processor the N5 is amazing.  I dont care for the freedom ( my opinion). Its just to big for me and It falls off my ear.  I am just getting nervous because Finals are coming up in college and I just hope everything will be okay.

To be Continued on Friday.......

Below is a picture of my N5 and the Freedom Processor.

Graeme Clark wins an award

Graeme Clark is the one that invented Cochlear Implants. This man saved my life because my entire life I struggled getting by with hearing aids and then I lost all of my hearing suddenly. This year I am so Thankful for my cochlear implant without my implant I would be miserable. Being isolated my entire life over my hearing loss was a set back for me. I was always shy and nervous when people where around me.  My N5 has opened many doors for me. I am able to communicate with ease. I may not catch 100% of what your saying all the time times but remember one thing nothing is perfect. This has been the best few months of my life. Regardless of some technical problems im experiencing now. I wouldn't trade this for anything in the world. I am able to hear for the first time in college, hearing students all the way in the back of the room is amazing. Hearing a two year old is priceless. Hearing on the telephone is amazing.

Graeme definitely deserves this awards and I hope someday I can meet him.


Check out the article below.


Cochlear Implant Scientist 



Have a great day!

Newest Update with my Nucleus 5 Cochlear Implant

I havent been around because college is keeping me really busy. I barely have time to  relax anymore. I cant wait till this semester is over. 

The lastest information about my Cochlear Implant is not so good news. I am very upset. Unfortunately, my Audiologist knows the on and off has been occurring way to much and we replaced the Nucleus 5  five times now. Every piece over and over again. Its not even a year yet with the cochlear implant so its a bit strange and confusing as to why this is happening. We just dont know why. We are trying to rule out every option like a few weeks ago when I met with the cochlear rep, when she did the test. 

Anyway, The ch ch ch ch ch sound is so annoying that there are days I cant understand speech and the worst part of this all is most of the time all this happens when im in College when im sitting in class. Thankfully I have an interpreter and knows ASL. The implant is completely fine when I wake up in the morning and I take it out of the Dry and Store. I put it on get on the bus either twenty minutes into class or 45 minutes into class I get ch ch ch ch ch and then it shortens out and goes completely SILENCE. At first I thought the battery died and I missed the beeps but no I was wrong (OFF) then right back ON,  That is the pattern all day long. The same pattern but worst at this point. Has been going on for quite some time now. Its the same thing everyday. Im getting used to it but its frustrating when the implant shuts off for a long period of time and that has started weeks ago and hasn't stopped since. The remote stays home and heres why because every time well most of the time its on my head its fine and then when it does the ch ch ch sound its fine. No trouble shooting to do. Then sometimes I see that it said my implant is off when I hear sound when its not its clearly on my head. So thats why I just keep it home.

So heres whats happening now in the next week. My Audiologist  emailed me yesterday and decided that she wants me to try the FREEDOM processor. I have seen the Freedom processor because my friend is a bilateral freedom user. This will be my first time using this processer so I am nervous because I need to hear. I will be getting the processor on Tuesday 11/22/2011. The point of getting the freedom processor is to see if the Freedom works. If the FREEDOM processor works, well.. I dont want to know what happens next. That is the next question I will ask my audiologist when I see her Friday on November 25th. The processor was suppose to come over night but its coming Tuesday night instead so I hope two days is enough time to figure out if the Freedom is working or not. First I have to figure out how to use it that will probably take me a few hours. 

I am upset and disappointed but I am thankful that I can hear each and everyday with my implant. Even though I am having problems with the device I can still hear. Honestly I cannot live without my implant. This is something I rely on for the rest of my life.  I am going to leave this with a happy ending. 

CI moments and New Sounds....

-  A CI Moment before class on Monday morning I was sitting in the hall in college and all the way on the other side of the hallway there was a student and I heard her music from her Ipod. Not the exact song but I heard music.  The coolest moment ever! 

- Acorns if you step on acorns makes a noise. When Acorns fall from the trees makes a noise when it touches the ground.  I was trying to figure out where the noise was coming from. 

- The wind is so loud. When it is windy out and the leaves are blowing with the wind. What a sound! I heard that on Monday.

- spraying perfume makes a noise.

Tomorrow is my Birthday and I am looking forward to spending time with my niece all day! This will my first birthday with my Implant. :)

I am looking forward to Thanksgiving and Christmas which will be my first time with my implant. I am excited to hear new sounds and Christmas music!

Have a good night

Hugs

Danielle

Sign Language Basics

Sean Berdy and Katie Leclerc

To all Switched at Birth fans, Sean and Katie was recently in Disneyland, CA filming the
" O Holy Night" Christmas Special that will be aired on Christmas Day on channel ABC!!! Here is a small clip.

It is NOT CAPTIONED!


It is amazing! I cant wait to see this.

Trip To Gallaudet University with the ASL CLUB

 Friday November 4th,  I had the opportunity to go to Gallaudet University thats located in Washington D.C. with the ASL Club from my college. Gallaudet is the only higher education institution which all programs and services are specifically designed to accommodate Deaf and hard of hearing students. The university was named after Thomas Hopkins Gallaudet. Hearing people are also welcomed for undergraduate programs.

 A few years ago I had the pleasure being the ASL Club president for three years. It has been four years since visited Gallaudet. So much has changed in the last few years. We left on Friday November 4th at 4am and didn't arrive in Washington D.C. till about 10:00am. There were forty five students that went this semester. Many of the students are interested in becoming interpreters. The tour was the same, about an hour. I also saw new buildings that will be brand new dorms. We did so much throughout the day.We did the scavanger hunt where students had to be in groups and sign to deaf students on campus asking questions about the university. It was interesting to watch them sign to deaf students. There was so many deaf students around, It felt like heaven. A place where I NEED TO BE. Unfortunately  I cannot go there because of funds. So many deaf people signing to me asking me about my Cochlear Implant. Gallaudet has many students now with cochlear implants so they do "ACCEPT" us. Years ago the University was against implant's but things have changed. 

After dinner around 8pm the students from the ASL CLUB said there was a dance going on. I was so excited and I didn't think it was a big thing I thought they meant just two people dancing. Turns out it was a big crowd and everyone from Gallaudet were signing and the music was so loud. It was the best experience of my life. I have it on video. The music was so loud because Deaf people cannot hear music we feel vibrations so it was just amazing to hear all this with my Implant. To see the ASL club reaction to this was priceless as well. Most of the students said this dance was the best part of the trip. I think it was too. So many people yelling and signing and you really had to see it to believe it! It was basically a dance competition. 

I wanted to share you with two of the many photos that I have. 

PLEASE DO NOT TAKE MY PERSONAL PHOTOS: They are for viewing only!


Click on the picture to make it bigger.


One of my Favorites: " Deaf people can do ANYTHING"

To the left is 1960 Electronic Hearing Aids. 

The middle : Over-ear BTE hearing aid from 1975

To the Right: Cochlear Implant from Advanced Bionics  on the Right.

It was so interesting to see how much technology has changed over the years. It was another great experience.  I hope someday I get to go to Gallaudet University as a student. It would be a dream come true. I felt like people understood me and accepted me as is on their campus. This was the first time I had the chance to communicate with Gallaudet Students.  Finally its 10pm and we get back onto the bus to come home to NY. It was a very long day,basically a 24 hour trip. Definitely worth it!!!!! 

Smile Hugs-Danielle

Bullying has got to stop!

PLEASE READ BELOW:


A teacher in New York was teaching her class about bullying and gave them the following exercise to perform. She had the children take out a piece of paper and told them to crumple it up, stomp on it and really mess it up, but do not rip it. Then she had them unfold the paper, smooth it out and look at how scarred and dirty is was. She then told them to tell it they’re sorry. Now, even though they... said they were sorry and tried to fix the paper, she pointed out all the scars they left behind, and that those scars will never go away, no matter how hard they tried to fix it. That is what happens when a child bully’s another child. They may say they’re sorry, but the scars are there forever. The looks on the faces of the children in the classroom told her the message hit home.




Did you know that Adults Bully too???

I will be back with an update later...

Hugs,

Danielle

Snowing in October

It has been snowing all day here in NY. The power has been going on and off all day as well.  I cant believe its snowing in October. Crazy! I have a feeling we are going to have a really cold winter. It's freezing out there.

I am still having problems with my implant the crazy sound " ch ch ch ch ch" is back again and its 100x worst. I put a call into audiologist office and she got back to me, the cochlear rep has to come up with different ideas. This has to end at some point. It comes and goes but of course the next day the moment I put on my implant the sounds was happening all day and I couldn't hear anyones voice like I usually do. But I keep thinking how I CANNOT LIVE WITHOUT THE IMPLANT... & ITS GOING TO BE FINE at some point.  To be continued....

For all of you that have watched Switched at Birth  Sean Berdy who plays Emmett on tv came out with an amazing ASL VIDEO today. It has captioned for those of you that dont know ASL. You have got to watch this. It is amazing! You can also pre-order Season 1 DVD here its not available till December 13, 2011. Switched at Birth Season 2 is coming on early January!






What do you think of the video??


Hugs-Danielle

Gallaudet University College on MTVU

Check this out. Gallaudet University is on MTVU for the next four weeks.

University for the Deaf

Quiet Campus    -  This is a video and it's captioned.



Also, This is a nice article about Induction Loops from the New York Times Paper.




Hugs-Danielle

Meeting with Cochlear

This morning I met with cochlear because I been having problems with my implant. They did an Integrity test on me to test to see if the implant is working. This test is NOT DONE by your audiologist it is done by the company because audiologist cant do this. I had hold some metal piece in my left hand and the wires in the other hand. Then she put electrodes that look exactly what you use when you have an eeg done onto my ears after she wiped my ears. Then a plastic implant which was the coil was placed onto my head. I heard a series of sounds (basically for testing). Everything looked good. She cannot detect what I am hearing and how I am hearing. During the test I had to let her know what I was hearing if it was to loud or soft and it was frequent etc.  Finally the test was over and she will be giving the Cochlear engineers the result this week. The woman also came up with some ideas. The first thing is my mapping was way too low, that is why my  rechargeable batteries have been lasting me two weeks( which is a great thing) but not good. She believes it was too low, but could be wrong. Then the audiologist had to mapp my implant. The woman said to make it louder and adjust a few settings. So that is what they did. I now have the option to use the sensitivity button but she did warn me not to use it that much since we have to try and figure out the problem still. The CH CH CH CH noise hasn't happened and it hasn't shut off.  I have to write a log for the week and get back to them next week to see how i am doing if there are any changes, worst or better. If it gets worst or there is a change I will go back to the clinic for the second option.  The woman from Cochlear who did the testing saw a big gap with my rechargeable battery. It felt tight but for some reason the rechargeable battery pack was not on the way it was suppose to be and I didn't know this. I thought it was normal so she ordered me a replacement. She said it could be the problem but we aren't sure yet.

Everything else is okay. I am hearing great I have sound all the time it just there are days that I get that weird sound and the random SILENCE when its on. Today I realized in the car coming home that I can understand everything on the radio. The news and weather was on. I was also talking to the driver and I was sitting behind him. It's amazing to be able to communicate with ease. Yeah there have been ups and downs I get it ITS LIFE. Unfortunately nothing is perfect and I seriously cannot imagine my life with my implant. I cannot believe its already 7 months since activation. 

My niece is 2 years old. I cant believe it time flies. Hearing  ALMOST everything she saids is PRICELESS especially " I LOVEEEEEEE YOUUUUUU D" That is exactly how she saids it. She is in day care two times a week and notice she is growing up way to fast and is too smart for her age. The other day she ask me " you ok D" I love it she is amazing! 

I will be back later I just wanted to give a quick update. I have so much more to share.

Hugs

-Danielle

Skin It Available for Cochlear!

If you have a Freedom or a Nucleus 5, we can finally design our Implant's! Go to Skin It. Make sure you click on the correct implant that you have and start designing. There are so many cool designs.

N5 Directions for Skin It

Nucleus Freedom Directions 


I will be ordering a few. Once I get them Ill post some pictures. I would love to see yours!


Have a great day.

Deaf Girl hears her voice for the first time

Deaf woman is twenty nine years old and hears her voice for the first time.

Video

All I needed was a mapping...:)

The past three months has been a roller coaster. The simple problem was " I JUST NEEDED A MAPPING." What a big relief. Now I know. My audiologist said instead of 6 months to come in every 3 months. This was happening in the beginning but because she said I was doing well she didn't think I would need a mapping. So I now know when I need a mapping. This program seems to be better. Im confortable with it. I can turn down the volume if I need to. Sorry for rambling on last night I was just panicking.  My audiologist checked my implant with a series of beeps. Everything was fine. The echo came back on when she changed the mapping. She kept adjusting it and then finally the echo went away. 

I get it sometimes with technology things dont work or it just needs to be replaced. So now I know I have to go every 3 months. I havent had a mapping since June. 

Thanks for thinking of me! :)

Hope all is well

Smile-Hugs,

Danielle

Frustrated...

It all started I think two months ago. The implant is static and muffed. Its so bad that its shutting off by itself now. NO its not the batteries. This is my 3rd processor and I only have been activated for  7months.

This is the same problem I have had with all my implants. This started up again three weeks ago with my new processor. Static is there when I turn it on and then it gotten so bad that It shuts off. I dont get it. Im in class happened 2 weeks ago... heard the noise it happened the moment class started. I panicked thank god I have an interpreter. I changed batteries about 5 x.  NO LUCK. STATIC/MUFFLED all day. Then 3pm comes and its okay for my second class. All sudden 20 minutes into class it shuts off AGAIN. I knew it wasn't the batteries. Then I looked at my remote and it said COIL OFF. Im like no its not its on MY HEAD! Bugging out I finally called cochlear had to leave class to do this. They probably think im crazy! I explained my situation and almost started to cry. I need to hear for school. So he said go for a mapping and make sure they do an integrity test? Never heard of that before. So I emailed my audiologist and she said start making a log of when this happens etc. I have been dong that for the past two weeks. At this point is happening so much that I cant even wear it. Its not only happening in school its happening when im home. I am just a bit worried because of the RECALL.

Right now the implant is on and is muffled and static and i hear myself echoing a little. So then I turn it off ( i tried this yesterday). I turn it off for about 10 minutes. Then I turned it back on its good to go back to NORMAL for about 5 minutes THEN it comes back. Now listening to music is fine I dont need the music program and yesterday as im on my way home from class the static happening while my ipod was playing.So now I cant even enjoy music at the moment.  I just dont get it.

Im sorry im rambling on im just very nervous because I need to hear. I dont get why this is happening. I get that things happen and this is what happens with technology but enough is enough.

My audiologist told me to come in first thing in the morning so this is my only chance!!!!!!! It better work. Im hoping it just a MAPPING! I have a test on monday. I havent had a mapping for about 5 months now.

 By the way with the disposables and Rechargeable no difference same problem. Using my backup same problem. The entire processor goes into the DRY and STORE every night. Also changed the microphone protectors about six times. YES 6 TIMES!  So I dont know what it could be....


I have a question...  someone said " I know when I need a mapping." How do you know when you need a mapping???

TO BE CONTINUED.....

College with a Cochlear Implant

Sorry I havent been around. So busy with college. It's been a great experience so far hearing in a classroom setting for the first time with 30 or more students. Its awesome. I have no words.  Even when I was hard of hearing I never heard a thing in a class. EVER. I hear most of what the professors say but I still have the ASL interpreter as a back up. There are times I miss what the professor is saying when he/she is writing on the board or walking around the room. Its great to be able to hear. I noticed I am more outgoing. I have been speaking so much in class! Never in my life have I done that haha. I would just start talking in class an answer questions. One time I ever volunteered to write the answer on the board. Its a whole new me. Hearing with my Cochlear Implant has been the greatest gift ever. I am happy. Im outgoing. Im not really shy anymore. There are times I still have a problem. For example: at the food store, or post office. I am doing great though! 

On the other hand.. I found out about the Recall for my N5. I am a bit worried but need to remain calm of course. Luckily it has been working great!! and that scratchy sound was taken care of. It does come and go. Like today in class just watching the interpreter sign and all sudden It was SILENCE. I started shaking because I have to hear! I switched the batteries and even the disposable. Then sounds came back on again and starting to go on and off throughout the day. Which was new. So I called Cochlear and they advise me go for a mapping. I havent had a mapping in 5 months because I am doing well and because I am comfortable on my everyday program. My audiologist dont expect to see me till November but now after hearing what cochlear has to say and friends I think I will have to go back into the city for a mapping. They said It could be something changed? So I dont know.

Yesterday i went into the city to see my audiologist because i couldn't get the ear mold onto the processor because I had the wrong ear hooks. She changed it to a small and stretched the ear mold. The ear mold is comfortable but today it started getting annoying and itchy throughout the day. Im trying my best to ignore it since its only day 1 with the ear mold on. The ear mold holds my implant and the implant no longer falls off.PHEW. It has been a nightmare due to having tiny ears the implant falls off 24/7 constantly to the point where I couldn't catch the implant a few times. I  have a hypoallergenic ear mold because I am allergic to ear molds. My ear turns so red and gets swollen. 

This weekend Im excited going to a Deaf event so many people are expected to be there its in Queens about 30 minutes from me. I am looking forward to this event.

The month of October is going to be so BUSY. Between my first test at school then a walk for my best friend, then I have Mill Neck deaf school that I volunteer at every year which I enjoy. I am so excited cant wait. Then Im off to disney world AGAIN! For my niece 2nd birthday for 3 days.

Im telling you time is flying like crazy! I cant keep up or live without a calendar! Hope you are all doing well.

Tomorrow I am hosting the first Coffee Chat for people with Cochlear Implant's in my area. I am excited to meet new people who have implants and people that are interested in getting a CI. I will be back tomorrow to tell you all about it.

have a great night!

Chris & Peter Artinan from the HLAA Convention

I had the pleasure meeting Chris and Peter Artinan at the 2011 HLAA Convention.

For those of you that dont know Chris Artinian, he is the president and CEO of Morton's Restaurant Group, delivers an emotional and powerful keynote speech at the Hearing Loss Association of America's Convention 2011 on June 16 at the Hyatt Regency Crystal City (VA). The Artinian family was the subject of the documentary Sound and Fury about the their struggle over the decision to get a cochlear implant for their son. ( this is taken from HLAA website)

Chris was the Keynote speaker at the Convention. Watch this video its captioned.

Convention 2011

Hugs- Danielle

Featured in the HLAA Magazine

I am in the September/October 2011 Hearing Loss Magazine from Hearing Loss Association of America.  Page 42 which is the last page. Photo credits to Cindy Dyer.  Click on the picture to read the questionare. If you are not an HLAA member yet Join Us! to receive the magazine.

Hugs- Danielle

BACK TO SCHOOL & A FEW UPDATES

I cannot believe its September!  This summer flew by really fast. Im finally back in college and I am so happy I am there. Its been four years. My first was awesome I knew both of my professors. I had an interpreter for both classes. I was exhausted when I came home. I just have to get used to it all over again. Hearing with my cochlear implant for the first time IN CLASS was an awesome experience. I was able to hear my professors while the interpreter was signing to me. There were times I couldn't understand what the professors were saying. So I am glad I have the interpreters. In math we started doing math problems. Last month I started math because its my weakness. My professor asked if we all knew what "Logic" was and some of the terms. I immediately raised my hand ( which I have never done in my life). I answered every question and my professor was like "How did you know that"and then I commented back saying " Im good." Something I would never say in my life! I guess I was calm because I was able to hear well.  

I am glad im back in school. Its something I need to finish. Yes I maybe sick still but I need to accomplish something in my life. I will be graduating Spring 2012. I am so excited and I am hoping to go to either Gallaudet University or Rochester Institute for the Deaf.

Ever since I had my cochlear implant. I feel more independent, I can hear well. I am happier. Its amazing how much this implant is a huge impact on my life. Its the best gift ever!

Remember a couple of weeks ago I was having this warbly sound coming from my processor. Well we changed everything coil and magnet everything. Finally they gave up and just gave me a new processor. I received the processor two days ago and It works fine. No more crazy sounds! (KNOCK on wood). I want you to know that sometimes there are technical problems but this implant has been by far the best 7 months of my life being able to HEAR & COMMUNICATE. I dont want you to get all discourage and say " I DONT WANT THE IMPLANT NOW" because she had to changed her processor. You cannot let things like this stop you. 

I received my ear mold in the mail yesterday and Its so difficult to put on the Ear Hook. First the tube is so tiny so i been trying to stretch it out. NO LUCK. I need this ear mold because my implant falls off my ear because I have baby ears. I am most likely going to have to go back into the city for this. Which is frustrating because I have no time with school and physical therapy. I have to get it done of course. The ear mold fits snuggly in my ear thats not the problem pushing the tubing onto the ear hook is a nightmare. My audiologist said's she has an tube tool that she can use to stretch it out.  I am hoping to go the week of Sept 18th.

I hope you are all having a good school year so far! I do read many blogs daily and I am so glad many of you are doing well especially the kids.

Hugs

-Danielle

Quiet Signs of Love

WATCH THIS. IT IS CAPTIONED.

NOTE: THIS IS AUSIAN SIGN LANGUAGE

Quiet Signs of Love from ikonfilm on Vimeo.

Audiological Evaluation 6 month Post Implantation

Today I received the audiological evaluation in the mail. This is amazing I had to share.

History: Danielle was born with Bilateral hearing loss, which worsened approximately two years ago. The etiology of her hearing loss is unknown; however she has been diagnosed with disease. In February 2011, Danielle was implanted with a Nucleus System 5 cochlear implant in her right and she received the external components one month later.

Technology. Danielle came tot his evaluation using a MAP in her CP810-processor composed in the ACE processing strategy in Meniere's her right cochlear implant. Danielle was tested by means of standard audiometry in the sound field. Responses to narrow band noise were considered to be of good reliability, indicating threshold levels of 5-20 dBHL for the frequency range of 250-6000 Hz with her cochlear implant. These findings indicated that danielle has full access to speech at normal and soft conversational levels when using her cochlear implant.

Speech Perception: Speech discrimination testing was performed at this evaluation.
Scores:

Test Condition Right Cochlear Implant
CNC Word List 50 dBHL 80%
AZ BIO SENTENCES 50 dBHL 89%

50 dBHL S/N +5 75% ( P1- " Everyday")
80% ( P2 - " Noise")


Word recognition scores in quiet, using recorded CNC word list, were judged to be good. Sentence recognition scores, using recorded AZBio sentences, were judged to be very good in quiet and good in noise. These findings indicate a significant improvement in speech perception in noise since the previous evaluation (75%-80% today compared to 41% three months ago).

3 MONTH EVALUATION #2

Today I went into the city for a full evaluation. My audiologist put me in the sound booth. I listened to beeps then I had to listen to sentences. This time it was a harder test than the first evaluation.

First I had to use my Everyday Program and listen to the sentences with the background noise ex: " Today was a rough day.", " Have a great day at work", " Her hair is very long." then it started getting harder. " I have to go to take out the garbage, then go to the food store." The sentences got longer and longer and I did AMAZING! WOHOOOOOO.

Jill said to try my NOISE PROGRAM with the background noise. I had to repeat different voices (male and female) of a conversation. It seemed harder with when I couldn't understand what the Male said. I started to get frustrated. She wanted to see the difference from the EVERYDAY and the NOISE.

My audiologist was very impressed. I am comfortable with her and she tells me everything too!


CNC WORD LIST was the same from the first evaluation that was 80% ( WHICH IS STILL GREAT SHE SAID)

Then the BIO SENTENCES: My first evaluation back 6/7/2011 I scored 41% . TODAY: I got 89% WOHHOOO!

I couldn't believe it. I thought it did bad. What a difference in three months. I was so happy I was going to Jump out of the chair and do a dance! LOL. My audiologist will send me the full evaluation report within the week.

I am still hearing in the NORMAL RANGE which is 10 db!!!!!! WOHOOO So she didn't want to do a mapping because she feels this is a great program for me. I will continue to stay on this program. She also said that if we put it so loud it will be overwhelming.

Then she took an impression of my EAR for an Ear mold because the implant keeps falling off. It happens every second because my ears are tiny ( I guess thats the reason why). The ear mold will be sent to my house. It will arrive in 2 weeks.

Remember that Warbly sound I was telling you about.... it was driving me crazy of course it didn't happen TODAY but she did say that she thinks it could be the batteries since everything was replaced. Hasn't happened in a few days so KNOCK ON WOOD! She did ask if I was putting it in the DRY & STORE. I told her every night i put it in there. I'll let it go.


Here is my audiogram from today: I was so proud I had to scan it. I never in my life thought I would hear so well. Its amazing to be able to hear!!!!!!!!!!!!




Here are both evaluations: ( CLICK ON PHOTO TO MAKE BIGGER)





I dont have to go back till NOVEMBER 22, 2011. After this appointment, it will be every 6 months.




Hope you are all having a great day!



HUGS

Locust Valley Newspaper

Remember my old post about volunteering. Well today I found out I was in the Locust Valley Newspaper. I am glad that my article was in the newspaper. Hoping there will be more volunteers this year. Cant wait for the fall festival.





I will be back tomorrow after my mapping.



Hugs- Danielle

How to use the Zephyr Dry & Store

Here is a video that explains how to use the Zephyr Dry & Store.

It is Captioned.








Hugs- Danielle

Going to School with Cochlear Implants

To all parents who have children that are going to school with their cochlear implants. Here are some articles that will help your child get the best education possible.

Back to School with Cochlear Implant's

FM Options

Choose the right FM Receiver for your CI

What is Individualized Education Program (IEP)

IEP Checklist

Parent Checklist for School Placement

Placement Considerations Checklist for Students who are Deaf and Hard of Hearing

Choose an FM system for your CI

I found out that Phonak is one of the top brands that cochlear recommended to me for a Receiver. You can check out which receiver is best for you.

( Please Note Below is a personal email from cochlear. I did not write this.)


FM Options for Nucleus® Recipients

In a classroom setting, FM systems may help a student with a Nucleus Cochlear Implant better understand the teacher by allowing the student to hear the teacher over other classroom sounds. This occurs by having the teacher wear a microphone, and having the student wear the FM receiver that connects with his or her sound processor. There are a variety of FM system and receiver options available. Cochlear™ offers several options for FM system use.

Nucleus® 5 FM Options
- Ear level receiver connected directly to the sound processor (ex: Phonak ML14i)

- Ear level FM receiver connected to the sound processor using the Euro Accessory Adaptor (ex: Phonak MLxi) TIP: Check out our YouTube video on using the Nucleus 5 with the Euro Adaptor!

- Neckloop receiver that functions using the telecoil in the sound processor (ex: Phonak My Link) FM cable connected to body-worn receiver

Nucleus® Freedom™ FM Options
- Ear level FM receiver connected to the sound processor using the Freedcom MicroLink

- Neckloop receiver that functions using the telecoil in the sound processor (ex: Phonak My Link)

- FM cable connected to body-worn receiver





Hugs- Danielle

Cochlear Implant Surgery Video

Make a video - it's fun, easy and free!
www.onetruemedia.com

I FOUND MY OLD HEARING AIDS

To be honest I cant remember most of my childhood. I guess I blocked everything out because I was isolated and confused 99.9% of the time. So I dont really remember wearing so many different hearing aids as my mother said. Today I found my old hearing aids and in the case it said they were from 2000. I decided to donate them to Starkey Hearing Foundation. If you have any old hearing aids or Assitive Listening Devices that aren't being used. Please donate them to Starkey. They need them more than ever. Here is how:

(Please Note: This is directly from the website)
Hear Now collects hearing aids for recycling purposes. Any make or model, regardless of age, can be donated to the hearing aid recycling program. All donations are tax deductible and a letter of acknowledgement will be sent to all identified donors.

If you wish to donate a salvaged hearing aid or other assistance device, please securely package donation and mail to:

Hear Now
6700 Washington Avenue South
Eden Prairie, MN 55344
1-800-328-8602


All I remember is I finally figured out that with the hearing aids because I couldn't figure out which aid goes in which ear. Red is for the right ear and Blue was for the Left. I wanted to share the pictures with you. This was when I was really young.







Have a good night!

Smile-Hugs

What to do to Combat Hearing Loss

Today's show talks about hearing loss. Its 7 minutes long. If the captions DOES NOT WORK, Then go to the website the video will come up below it on the right it will say SUBTITLES. Press on it and the captions will appear.

Visit msnbc.com for breaking news, world news, and news about the economy

What do you think about this video? I didn't like comments what the audiologist said about " If you do not take care of your hearing loss you will end up with dementia."
" Your brain will shut down". I honestly dont think that is true because studies and research never said that before.

Featured on Mill Neck School for the Deaf

Each year I volunteer at Mill Necks school for the Deaf which is located in Mill Neck, NY. It's about 30 minutes away from my house. I love volunteering at Mill Neck because I am surrounded by many people who are deaf/hard of hearing like myself. I also get to meet new friends. Mill Neck asked me to write why I like to volunteer. This is taken from Mill Neck's website. Once again for some reason I cannot add the link.

This article is supposed to be featured in a few of my local newspapers: Newsday, Daily news.


Special Fall Harvest Festival Volunteer Inspires 
“It’s as Natural to Me as Living”

Danielle Nicosia is one special volunteer, what with her outgoing and hardworking nature and willingness to help. A Fall Harvest Festival volunteer since 2007, Danielle has worked in the apple booths and sign language shop, both Saturday and Sunday, and through rain, sun and sometimes downright unpredictable weather. What keeps her coming back? “It’s a wonderful place! Every time I am there volunteering, I always enjoy helping and meeting new people. This is something I look forward to each year!” she happily explained.

Every Columbus Day weekend, 300+ volunteers, the life-blood of Mill Neck Family’s Fall Harvest Festival, are counted on to man a number of areas throughout the 86-acre campus grounds. From setup to winding down, helpers work in shifts or all day, and look forward to joining the much-appreciated volunteer ranks annually at the event, which turns 50 this year.

“I get so excited to volunteer at the Festival!” said Danielle, who went on to explain a typical day. “I usually get there early to help setup, and then I head to my volunteer area. For example, at the apple booths, I may start packing all the apples, and as more volunteers arrive I introduce myself. If there are first timers, I explain what we have to do for the day.”

As a profoundly Deaf young woman with a cochlear implant, Danielle looks forward to interacting with both Deaf and hearing crowds alike. Over 20,000 visitors join the Mill Neck Family each Festival weekend, and all enjoy the numerous activities, reunions, good eats and educational experiences with gusto.

And because the Festival showcases the latest in Deaf technology, sign language novelty items and books, Deaf participants and Mill Neck Manor alumni attend the event as a “homecoming,” bringing the heart of the Long Island Deaf Community together. On that note, Danielle says the Festival has “been the best experience of my life. I love meeting people just like me.”

Interestingly, Danielle says she didn’t know other Deaf people until she began attending college in 2007, as she was enrolled in special education classes at mainstream schools until then. “I actually found out about American Sign Language (ASL) and Mill Neck through an ASL class! Since then, I knew each year I had to volunteer and be part of this wonderful community. Meeting so many new people daily and being able to communicate with the Deaf using ASL has been a great experience for me. I also enjoy going to many Deaf gatherings, and currently, I’m finishing my degree to become a Teacher of the Deaf.”

If it were up to Danielle, she’d increase the already packed Festival grounds by thousands more, enticing visitors with fall’s finest delicacies, country crafts and activities. “I always recommend this event to my family, friends and even people I just met. Last year, I asked my entire hearing family to come to the Festival, and many any of them did and had a great time!” she said.

This special volunteer is already planning out her Festival weekend, from arrival time to the areas she’ll help out to the people she’ll promote the ever popular, 50 year tradition to. The active participant can barely contain her excitement and she shares final remarks about volunteering. “I think it’s important to help because volunteering is as natural to me as living. I love assisting others and being around a wonderful community.”





Hope you enjoyed reading this. Have a great day!

Hugs,
Danielle

Processor problems

Two weeks ago cochlear sent me a new COIL and MAGNET for my N5 processor because of the sounds I was experiencing. The sounds still do occur when I go out to a bar (which its so loud.) and also when I'm dancing or sweating. Every night I put my processor in the dry in store. I cant figure out the problem. Today the warble sound came back again and I took my implant off and I saw the magnet a little wet ( probably from sweat or my gel.) So I cleaned it off still the same. Then all night out to dinner is was fine. Very weird. A few people keep saying maybe you need a map. I'm probably due for a mapping and will be going soon August 24th. Hope this fixes the problem.
Other than that I am so happy to be hearing so many new things. Able to talk on the phone without using the wire. My implant still falls off so Im probably going to have to get an ear mold because It falls off way to much. Hoping even though I'm allergic to the ear molds the hypoallergenic will work. It hasn't in the past.

I start school September 7th and I cannot wait to go back and finish my degree. Its been 4 years out of college. Time flies and I hope I can do this since I am not feeling well with fibromyalgia.

I have been watching this new series called " Switched at birth" which is on ABC family in US only. Happens to be a deaf girl on the show its a pretty good show and I am so surprised many of the cast members are doing so well using ASL. This show is mostly for teens but I wanted to check it out since this is the first show with a deaf teen on TV. Monday is the season finale already of season 1 but I found out that this show has high ratings and it will continue. Season 2 will have 22 episodes.


Hope all of you are having a wonderful summer!

Smile-Hugs,

Weird Sounds coming from my Implant

Three days ago while I was out I kept hearing weird sounds with my implant. Every time I talked it was "echoing and sounded like a robot it was bazaar. Its not the noise I heard a few months ago. So the first thing I did was change the batteries. NO LUCK. Then I changed them again NO LUCK. I started panicking. I also used my dry and store every night so I knew it wasn't the heat. Its definitely random.

Yesterday I went to the doctors it was fine until I arrived at the office and all sudden I heard the robot sound AGAIN. I started to panic because I was alone at the office and I knew this would be a problem if I couldn't hear what the Dr was telling me. I switched the batteries. AGAIN NO LUCK. Then I called cochlear as I'm waiting in the doctors office waiting for my name to be called. I told the secretary I was deaf she asked me " what does that mean" I said that means I CANT HEAR YOU! and how I wont be able to hear my name called and if she can please come and get me.

Finally cochlear picks up I explain the situation and the implant goes back to NORMAL. She said not to worry and that she will get a coil send out to me right away.So I was supposed to get the coil today waiting and waiting because she said she will overnight it. It turns out they messed up on the shipping its 3 days shipping so I will get it Friday. SIGH.

So back to the Dr's My name was called even though I specifically said I WAS DEAF. No one listens to me. No one came and got me. The nurse she said was calling my name for a few minutes. I told her sorry I explained the the secretary that I WAS DEAF and of course the secretary NEVER TOLD THE NURSE. Finally I saw the Dr. 40 minutes later.

Last night, As Im walking out the door to go to the movies that sound came back again! I didn't have my remote with me so I couldn't troubleshoot it. Then it stopped as I sat in the car. Then as the movie started it started up again and lasted for the entire movie even all the way home! So I ran to my room got out my remote and the remote claims there is no problem.

Tonight I changed coils from my backup and the problem still occurs.


August 24th I have my 2nd (Every 3 month Mapping appointment).


To be Continued...


Hope you are all having a great summer. It is so hot here in NY although the past day its been cooler.


Smile-Hugs,
Danielle

My Story featured on Cochlear Implant Online!

I was asked by Rachel to write a story about myself for her website. For some reason I cant post the link. Thank you so much Rachel for asking me.

Danielle was born with a moderate-to-severe hearing loss. She was fitted with hearing aids at a young age. She shares the struggles of growing up with hearing loss. However, there is a happy ending to the story!

My name is Danielle. Since birth, I have had a Bilateral Sensorineural Hearing Loss (Nerve Deafness). I am the only person in my family with a hearing loss. My parents didn’t really know what to do for me when I was younger, Because no one told them about services that were offered at the time.

I struggled my entire life in Special Education. I was in a regular public school and BOCES (Board of Cooperative Educational Services) for hearing and speech services since age two. Everyday I had speech therapy. It wasn’t just one hour. It was hours of speech therapy. At the time, I thought this was required. I didn’t know I had a hearing loss until I realized I was different at age 17 years old. That’s when I realized something was wrong with me. I thought it was normal. All my life, I have been very isolated and stayed to myself because ” I am different.”

I don’t recall learning that much. I wasn’t able to hear that well with my hearing aids and my FM SYSTEM. My parents have bought me numerous pairs of hearing aids that didn’t help me at all. I know how to lip read very well. That is how I get by. When I reached high school, I was struggling tremendously. I still had speech therapy where BOCES would come in my high school and pull me out of class just to lip read. I know how to lip read so well that if you are a table away and you have your mouth covered I can even read the side of your mouth. It's amazing. That’s how well I was taught. The only best thing that ever happened to me is speech therapy.

I was in a really bad setting in high school. I never really got to learn. All I remember was being pulled out for speech and a TV always on in the classroom. Now I look back and realize this was the worst experience of my life. I had an FM system on my desk. I remember this one kid used to push it off my desk and my teacher didn’t do a thing. The FM System helped me hear a little bit. I would go for days without the FM system because this kid knocked it off. It would break and had to be repaired.

I understand my parents didn’t know what to do for me, but I would have done so much better in a deaf school. After my last year of high school, I was thrilled to get out of there. I wanted to start driving, but I had a really big fear because of my severe hearing loss. I didn’t know anyone who was like me. I was all alone.

Usually when I came home from school, I would do some homework and study for tests. I would fail because I never knew what was going on. I didn’t have a note taker like I was supposed to. I was very isolated, never really had any friends. I never trusted anyone but my family because I was always made fun of. Months later after graduation, I realized I wanted to become a teacher. Even though I struggled in school, I had this one teacher that I loved in speech class. She always told me I would make a great " teacher" someday. I believed her.

She inspired me to go into the field. One year later, I applied at a college near me. I had to take an Entrance Test, and I asked for services: extra time for the test, FM System, etc. I was used to having multiple choice questions just with 3 answers. I remember taking this test. It took me 8 hours. I failed it. I didn’t know the science and math. I had to be placed in non-credit courses to learn before I got into regular college-level classes. It was awful. I felt dumb and stupid, and I was so upset with myself. I cried for a month. I was so mad at myself and thought I was a failure.

One year later, I learned math, science and English for the first time in my life. It was a whole new world for me. I passed those classes with flying colors. I stayed at the college campus for hours and hours after class was finished just to get a tutor to help me. I FINALLY DID IT!

I started college-level classes in 2006. That’s when my life changed forever. In class, I saw someone using their hands and I had no idea what it was. It was an interpreter using American Sign Language. I was shocked, I had never seen anything like this before. I asked my deaf/hard of hearing counselor what that was and she said ” ASL”. She then told me, “You know that you’re not the only hard of hearing person out there.”

I said, “Really? Please sign me up for this class next semester.”

I knew I had a problem my entire life, but I wasn’t sure what was wrong with me until my mom explained it to me. I remember asking her “Whats wrong with me?” That is when I realized I wasnt just like everyone else. I was different.

In 2007/2008 I took ASL classes. I met two people that were deaf. I was so happy to be surrounded by people like me. It was like heaven. I was so happy to go to college just to talk to these two girls because they were just like me and we understood each other.

In 2008, I mastered all the levels of ASL. I became the ASL president for 3 years. My ASL group went to Gallaudet University for the deaf a few times. It was the best experience of my life. I changed my degree to major into ASL.

In college, I had an Interpreter after I completed my first ASL class. I also had a CART captionist (a person who uses a laptop and types everything the professor and students say). It can be printed out if you ask and you take that home to study. CART is amazing. It saved my life when I didn’t know much signing

Five years ago, I got very ill and couldn’t finished college. I was so upset because I was only four classes away from graduating. Then my hearing worsened from severe-profound to profound deafness. I cannot benefit from a hearing aid in my right ear. I can benefit a little with my left.

In 2008, I was at the 1st NYC Walk4hearing. I raised over $3,000. I had the pleasure meeting so many new people there. I was introduced to this one woman and her name was Jen. She was wearing two devices on her ears that was attached to her ” head”. I asked her what they were and she told me they were cochlear implants. “They help her hear,” she said. She then told me she was profoundly deaf during her entire life and never heard one sound before up until she received her implants five years ago. For one year, I researched about Cochlear Implant’s after I lost most of my hearing in my right ear. Then I knew that this was best for me. I wanted to be able to hear my niece.

In Feburary 2011 I had surgery for a cochlear implant. I was so scared because of my illness, but I needed to HEAR. I needed to just fit in. On March 8th, 2011 was the best day of my life and was able to hear within 10 db. I was activated. I heard water, a pen drop for the first time and so many more sounds. I couldn’t believe all the sounds I have been missing out on my entire life. My favorite sound is the ocean its so relaxing. I didn’t know the ocean had a sound until I went to the beach with my cochlear implant. Everything makes a sound. I love the option how I can be in both worlds. deaf when I can’t take anymore sound for they day and then when I want to hear I can just put it right back on my ear. Having both worlds is a great experience. I am so grateful I have this implant. A month after I was activated, so many people came to me and said ” You have the biggest smile on your face.” ” You are seem so relaxed”. It’s true I have been so relaxed with this implant because I don’t have to look at you and read your lips. I can hear mostly everything your saying. If it weren’t for Jen, I wouldn’t have my cochlear implant today. I didn’t know Cochlear Implants even existed. Jen changed my life and I am so happy to have her as a friend.

This is my personal story, not every story is like mine. I basically had to advocate for myself my entire life. Now that I’m 25-years-old and will be going back to school in September to finish my degree. I also will continue to be an advocate. I am involved with the Hearing Loss Association of America. If you recieve the Hearing Loss magazine I will be in the September 2011 issue.



For all parents out there: It can be hard to deal with children who have a hearing loss. My parents were lost and confused for years. They didn’t know what to do for me. My mom was basically in DENIAL. She was afraid that people would label me. Early Invention these days is wonderful. It has been around since 1985, but my parents had no idea. No one told them. There is so much accessibility these day for kids. It’s amazing! Here on my blog on the right hand side is a list of resources. If you cant find anything and need help finding support in your state. Please dont hesitate to email me. I am always here to help.



To all my Readers out there: I hope you enjoyed my story. Most of all to all you children and adults: Follow your dreams and dont let anything stop you!!!


As Marlee Matlin Saids: "deaf people can do anything EXCEPT HEAR." It's true we can do ANYTHING.


Smile-Hugs,
Danielle