GROWING UP HARD OF HEARING IN A HEARING WORLD

Re- Implantation Activation...

2012-02-13T21:33:00.004-05:00

Today I went into the city for Activation. First I saw my surgeon, he removed a stich that was sticking out. Then I went in for Activation. I was very overwhelmed. My audiologist tested my implant before it was going to be turned on. When I was switched on It was really low. I had to raise my hand when I heard a beep. She then made it louder and I started to hear noises but this time it was different. :( I hear mickey mouse sounds. More like a puppet. This is so hard to explain because I never experienced anything like this with my first implant. I started getting nervous but I knew that this implant is totally different. My audiologist said a few words back to me and I heard most of them. I am just freaking out over the different voice. I cant really hear much. I feel like Im straining to hear.

When I got home I was exhausted that I just passed out for an hour. Then I practiced my hearing. I am having trouble understanding words and basically everything. The program is on really low. While I was practicing I used my remote to change the processor to program 2. This seemed a little louder but this still seems to low for me. I have to stay on each program for a few days each.

Here are some of the words I am having trouble with.
Cup Run
Shoe Van
Pea Bail
Fill Very
Feel bent
Mat Po
Bat Bug
Rat Ten

I can barely hear, I am stressing out. I have a lot of practicing to do. Like I said I feel like Im straining and I'm lipreading more. Yes, I know I have to be patient. This just seems so different than the first time around. It is only day one. I will not be using my hearing aid anymore in my Left ear. Now I have to learn to hear all over again with the implant. Back to the beginning.

Here is a short video. I tried to caption it the best I can...

I will be back during the week. I have to go to bed im exhausted.

Activation is in one day...

2012-02-12T01:02:00.003-05:00

I'm back! The last couple of weeks after surgery was really rough. I am still dizzy, but I am much better. I have my days. Anyways the great news is ACTIVATION is finally here tomorrow. I am pretty nervous this time around. I have to bring both of the processors which includes the backup, cables, remote and batteries and a few other things my audiologist needs. I hope I dont have to start all over again to hear. Maybe I will be able to pick up from where I left off three months ago. I am leaving by 730am Monday morning. I have to see my surgeon first at 930am then 10am is activation which is two hours long! This is going to be a long day.

I am excited to hear again. I feel like I have missed so much in the last few months that brought me back into that isolation stage. It was the worst... but thankfully I had a hearing aid for my left ear.

By the way the tinnitus ( ringing in the ears) is GONE thank god. Thanks to Dr A. for giving me XANEX for it. It works.

Hope all is well. I will be back possibly Monday night.

© 2012 My personal Hearing Loss blog

"The Hammer" movie

2012-01-31T13:36:00.001-05:00

Matt “The Hammer” Hamill is a deaf American amateur wrestler and MMA fighter. He was a three-time NCAA Wrestling Division III National Champion (167 lb. class in 1997, 190 lb. class in 1998, and 197 lb. class in 1999) while attending the Rochester Institute of Technology in Rochester, New York.

Synopsis:
This movie is a real life story about Matt's life.

The movie " The Hammer" is Inspired by the life of deaf UFC fighter, Matt Hamill. "The Hammer" tells the story of what it takes to be a champion, on and off the mat. "The Hammer" is a coming of age drama depicting the struggles and successes of what it takes to become a champion. Raised among those with the ability to hear, Matt later finds himself no less an outsider amidst the Deaf Community. But through sheer determination, he uses his 'perceived' disability as an asset, and becomes not only the first deaf wrestler to win a National Collegiate Championship, but an inspirational force to both hearing and deaf alike.

Today January 31st, 2012 " The Hammer" is now available to buy at Walmart and Best Buy
for those that didn't pre-order the movie. Also available to Canadian fans through Amazon and it is available at your local Blockbuster store to rent.

A few days ago I received the movie in the mail and watched it immediately. I pre- ordered it online a few months ago. I really enjoyed watching this. The movie has subtitles already on the screen which I like. I also love the behind the scenes. Definitely worth buying, something I can watch over and over again. I had the pleasure meeting Matt a few months ago at deaf expo. He was so nice. We took a picture together but I wont show it here because I dont like how I came out in the picture. Pick up your copy today!

© 2012 My personal Hearing Loss blog

Not so good news... Saw my surgeon today

2012-01-30T20:25:00.000-05:00

I have a lot of crazy symtoms going on. I called my surgeon so many times in the last week, I felt so bad. So mom took off and took me into the city today to see him. I am still very dizzy but I am on Meclizine to calm the dizziness down. This seems to be working so so. I just started it three days ago. It is is going to take awhile to get better.

So Dr A. said I have unusual cervical swelling. Of course its unusual. He said I shouldn't be having any of the symptoms AT ALL. Great! Then on top of an infection I had last week from antibiotic, I felt a really bad pain about four days ago in the back of my head. The pain woke me up in the middle of the night. The pain is no where near my incision. It hurts like hell its called a lymph note.

Dr A. knew tried to correct the dizziness. I had to lay all the way back in the chair. As soon as I laid all the way down. I felt so sick. I thought I was going to puke everywhere, then I started to get very hot and cold, then really hot and my entire face turned red. He was doing something with my eyes. Saying something after surgery crystals can be someplace that they shouldn't be and can cause dizziness. Something like that. I dont remember because I couldn't function.

I am on two new medications one is an antibiotic to get rid of the swelling and the lymph note. I am still taking Meclizine two times a day. Then I am on Difulcan to prevent me from another infection. Last week on top of all this I had an infection and it hurt like hell. Thank god that is over with. So to prevent the same infection i have to take another medication! So I am on four medications for all this drama. Then I got to go to GNC to get Acidophilus because my luck ill end up with another infection!

I am exhausted. I can sleep forever. The entire room is spinning as I speak and I feel so nauseous. I cant take it. I am trying to stay calm. This is the worst experience ever. The only good news out of this is I asked Dr A. If I could move up my Activation date so now my activation date is February 13, 2012.

Dr A. also peeled a lot of scabs off my scar. It was so grose by the look of my moms facial expressions. The incision feels better it felt so heavy. So now the incision looks the way its suppose to.

I had to cancel class today so I wont be going for this semester. I am very upset over this. I pushed myself so hard to go to school three days after surgery honestly, I couldn't do it. It is going to take me awhile to recover especially with my real illness. So it sucks I am not a happy camper at all. Ill go back in the summer....

Dr A. said I have to this exercise 3x a day! To get rid of the dizziness. I have to lay flat without a pillow on the bed.Then turn my head all the way to the right as long as I can I have to stay there. Then I have to straighten my head. Repeat again for several times. I just tried it and it was the worst..... this is going to be FUN!!!!

All of this is a major set back for me but hopefully I will be up and running soon!

This is what my incision looks like after Dr. A cleaned it. He also put ointment on it.

Hanging in there...

2012-01-26T21:53:00.001-05:00

I'm so dizzy that I have to hold onto the walls and sometimes I fall. I also see a lot of stars in my eyes every time I blink and feel like im off balance. Three days ago the surgeon said this is "normal'. but I feel like this has gotten worst in the last few days. Tomorrow I had an appointment to see my surgeon for a 7 day check up, but it is way to much for me to go into NYC by train alone when I can barely walk around the house.

Today was a very rough day on top of the rain all day. I felt like I wanted to give up today because I am pushing myself so hard to go to school to finish. Physically and mentally, I know I shouldn't of went back. This class is three days a week. But, I wont GIVE UP!!!! If I cant handle it by next week then I am going to have to drop.... I pushed myself to far today.

For the weekend I am just relaxing and sleeping as much as possible. Hoping monday will be much better so I can focus in school.

The incision looks thicker this time :(

Have a good night!

1 week since surgery..

2012-01-25T09:01:00.004-05:00

Wow. Time flies. Today is already one week since surgery. This recovery was the hardest believe it or not. The first time around was easier. The first three days I couldn't stop vomiting, then out of nowhere my nose just kept running like a water foundation and sneezing too! Boy that hurt. My god for the last 4 days I been sneezing every 10 seconds and I cant stand it. I was told to sneeze with my mouth no nose because If I dont it will strain the ear. Then wait it gets better I started to get a Low grade fever on Jan 19th and 20th. Shaking shivering. What a nightmare thats all I got to say! Oh I forgot to mention I am so dizzy its pretty bad. This took affect when I came home. My Dr. said its normal but seriously I never experienced anything like this ever. Im holding onto walls...

Last week on Wednesday Jan 18Th., when I came home after surgery that night, I started feeling some pain. After that I had no pain what so ever. THANK GOD. Two days ago I started to get overwhelmed and upset because I was hoping I wasn't getting sick. There is way to much going on at once and this is something I dont need on my plate right now, after everything I been through.

Next week I have an appointment to see my surgeon so he can check the incision. I am suppose to see him this week 7-10 days after surgery, but I cant get there because I just started class again. Right now the incision looks a little crusty and bloody. This better be normal. The first time around the incision was not like this at all. I'm a bit worried but I'm sure it is nothing.

I started class on Monday I literally pushed myself to go to school.My entire family kept telling me I was crazy for going. I slicked my hair back and was a wreck my hair looked like bozo the clown. I was dizzy on top of it all. I wanted to get there and get right home and sleep. I didn't want to miss the first day. Monday was a lot for me especially right after surgery. I only have one class this semester so it was only an hour and I came right home and slept.

Yesterday I started to feel so much better. Yes I know things take time and my recovery takes so much longer because of my illness on top of it all. I have no more runny nose & sneezing just magically stopped. My nose is so red, I look like Rudolph. So I am just dealing with the dizziness. Phew. Its over!

Honestly this is just my opinion.... I dont think I can go through this ever again. Most of it is part of my illness. This was a lot for me. I am exhausted and I have slept so many hours in the last week. But, this will all be worth it so I can hear my niece again. I cant wait for activation because my niece keeps talking to me. I have no clue whats she saying and it breaks my heart. I just want to hear how her day was at daycare and I cant yet no matter how close she gets. I hear nothing.

Thank you once again for all the support....

© 2012 My personal Hearing Loss blog

Surgery went well

2012-01-19T15:31:00.002-05:00

My parents and I arrived in NYC around 6 am yesterday morning. I asked for my interpreter and no one had a clue what I was talking about. Finally the manager comes out and said's hell do his best to get an interpreter. At 7am while I was in the waiting room the interpreter comes. I was relieved. I was so afraid that I wasn't going to understand what was going on.

Surgery went well my mom said. It took three hours. I was done early. In recovery the nurse was annoying she kept waking me up and I just wanted to sleep. I kept saying another five minutes to keep my eyes shut. " If you dont get up then you cant go home." I remember reading her lips. I remember getting home at 7pm last night. I was very nauseous and vomited the entire way home and all night long, I was scared and afraid too. I was shaking all night. It was tough to do this all over again less than a year. I kept saying I rather be deaf. Really it was just a lot and a bad day. Glad its over....

Today is a better day. I woke up at 9am because I slept all night. I was starving needed something to eat. Finally I was able to keep down my english muffin. The tinnitus is really bad. My Dr called and he said its normal. Every time I move the ringing begins, but if im sitting my I'm fine. I am mostly stiff with no pain. I can use a really nice neck massage right about now. I am glad I have no pain.

That it for now. Here are some pictures.

In the waiting room.

After Surgery.

Bandage had to come off this morning.

I'll be back in a few days....

5 more days till surgery....

2012-01-13T20:04:00.000-05:00

I am getting really nervous for re-implantation. Today I found out surgery is at 9am on Wednesday January 18th, 2012. I have to be at the hospital two hours early for pre op, no later than 6:45am. On Facebook there is a CI group that I belong to and one of the parents was confused. I had mentioned that I have been having pain and cannot sleep on my implant side. She suggested that I take the Implant out. So I wanted to clarify this here. The implant is surgically implanted into my skull, that cannot be removed.

These photos are taking from Cochlear's website.

Here is a picture of the N5 Cochlear Implant that will be removed on Wednesday.

I will be re-implanted with the Nucleus Freedom implant.

The outer part is called the PROCESSOR. I will continue to use the N5 processor once I'm activated again.

I should be back on Jan 19th depending on how I feel. Have a great night!

Trying to stay positive....

2012-01-11T14:55:00.001-05:00

Yesterday, I found out that my insurance was terminated. NOT MY FAULT. My insurance company made an error. In between all that drama... I received a call from my surgeons office stating I have to get a medical clearance. I went to right to the Drs. office so I can get this over with. Of course when they pulled my file it said " INSURANCE TERMINATED". This took forever because the office was packed and I had to lay out money because of the insurance situation. What a nightmare. I had to get blood work done as well. This morning, I get a call from the Dr's office saying that I have to come in because my white blood cells is slightly off. I started to panic and I called the Dr's office back and they said to come in ASAP. The nurse said its not a big deal and then she tells me we cannot give you medical clearance until your white blood cells are normal. I started to cry because surgery is just a few days away. So I went back to the office to get re take blood work again. The Dr. tested the blood work in the office and found out it was NORMAL. Phew. She said It could of been stress. YA THINK???

Seriously I need a vacation! I just called my surgeons office and the secretary received all the paper work. So I am cleared. Everything is set to go. Only a few more days till surgery. I am nervous. I cant stand being left out not knowing what is going on. Thank god I have a hearing aid in for my left ear.

Time for a nap I had a stressful morning...

© 2012 My personal Hearing Loss blog

A quote from Graeme Clark

2012-01-06T20:27:00.000-05:00

I wanted to share this quote with you that I found on Facebook. I have a lot of faith my surgery will be a success on January 18th, 2012. Now its just a waiting game. Things happen especially with Technology. This quote gave me some comfort.

A quote from Graeme Clark, who invented the cochlear implant..“In spite of the problems and criticisms, I just had to go on. A cochlear implant was their only hope of ever hearing.” -- Graeme Clark

Re-Implantation Surgery Date

2012-01-05T15:09:00.004-05:00

On January 3rd, 2012 I went into the city to see my surgeon. He knew it was a failure because my audiologist called him ahead of time. I waited awhile to see him, my appointment was only 5-10 minutes. I didn't even leave with my surgery date although Dr A. told the secretary put her in ASAP. The secretary told me she would call me the following day and never did so I called them. They didn't do anything yet. Yesterday I called again and they were looking at dates and she promised she would call me Today. Still nothing and it was 2pm.. so I called. Finally after waiting fifteen minutes on the phone she comes back and said the only available date is the Jan 18th when they knew school was soon. Surgery is scheduled for the January 18th 2012. I dont know what time yet. They will get back to me on that. My parents and I decided to get a car service. It would be less stress since its very difficult to park in the city.

I asked my suregon a few questions. How long will it take? He said 4 hours the same as the first time. I was surprised by the response because I found out in the UK it only took 1 hour for them to get re implanted. My surgeon did say it can be done in 1 hour but he cant just rip it out he has to take it out properly and put the new one in the right way. I also asked how long do I have to wait till activation? Basically the same 4 weeks because it has to heal. If you turn the implant on sooner than that there will be problems. So I will wait the 4-5 weeks. Then I asked if I'm the only one that this failure is happening to and he said no there is quite a few people from his office.

I am okay I am just more nervous then ever. I am not worried about the pain, I'm more worried about infection. I am staying calm. This is just a lot to take in all over again but I'll be okay because I have so much support from everyone and I am worried about school now. Thankfully, I have interpreters in class and I should be okay to start school.

Thank you all for the support it means a lot....

To be Continued...

© 2012 My personal Hearing Loss blog

My last post for the year....

2011-12-31T15:10:00.002-05:00

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

2011-12-28T16:33:00.001-05:00

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

2011-12-24T22:55:00.002-05:00

& Happy New Year!!

The Final Results.....

2011-12-23T22:43:00.000-05:00

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

2011-12-20T21:36:00.005-05:00

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

Cochlear Identifies cause of Failure

2011-12-20T11:54:00.004-05:00

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. ESTCochlear identifies cause of implant failuresSponsored: 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

2011-12-16T14:29:00.001-05:00

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

Bad News.......

2011-12-15T14:20:00.005-05:00

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

2011-12-14T22:43:00.003-05:00

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

2011-12-12T21:49:00.002-05:00

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

2011-12-10T17:34:00.004-05:00

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

2011-12-10T14:44:00.003-05:00

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

2011-11-29T22:44:00.001-05:00

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....

2011-11-29T05:13:00.001-05:00

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

2011-11-25T18:31:00.001-05:00

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

2011-11-22T18:56:00.001-05:00

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

2011-11-21T10:11:00.001-05:00

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

2011-11-17T20:31:00.001-05:00

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

2011-11-08T00:03:00.000-05:00

Sean Berdy and Katie Leclerc

2011-11-07T23:23:00.001-05:00

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

2011-11-07T22:55:00.000-05:00

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!

2011-11-06T20:38:00.002-05:00

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

2011-10-29T22:20:00.001-04:00

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

2011-10-25T16:48:00.000-04:00

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

2011-10-25T15:10:00.002-04:00

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!

2011-10-12T10:13:00.003-04:00

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

2011-10-03T11:17:00.004-04:00

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

Video

All I needed was a mapping...:)

2011-09-30T17:56:00.000-04:00

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...

2011-09-29T21:14:00.001-04:00

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

2011-09-21T20:56:00.000-04:00

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

2011-09-16T23:30:00.001-04:00

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

2011-09-10T12:00:00.002-04:00

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

2011-09-09T17:40:00.004-04:00

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

2011-08-28T17:53:00.003-04:00

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

2011-08-26T18:12:00.002-04:00

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

2011-08-24T16:14:00.006-04:00

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

2011-08-23T00:07:00.004-04:00

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

2011-08-20T20:25:00.001-04:00

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

It is Captioned.

Hugs- Danielle

Going to School with Cochlear Implants

2011-08-19T19:47:00.005-04:00

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

2011-08-15T15:36:00.000-04:00

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

I FOUND MY OLD HEARING AIDS

2011-08-14T20:56:00.004-04:00

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

2011-08-11T11:14:00.006-04:00

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

2011-08-11T09:14:00.004-04:00

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

2011-08-06T00:19:00.002-04:00

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

2011-07-27T19:29:00.002-04:00

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!

2011-07-14T15:48:00.005-04:00

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

Walt Disney World Experience 2011

2011-07-11T17:30:00.003-04:00

Thanks to my parents about 9 of us including my niece went to Walt Disney World in Orlando Florida! I haven't been there since I was one years old and dont remember anything. It was so amazing to be able to hear almost everything. It was nerve racking the first day. The sounds the music it was overwhelming. I was able to go on 2 rides with my cochlear implant without it falling off. It was the best experience ever. I have so many pictures and I finally met my favorite GOOFY!!!!! Growing up I called him " GOOPY" I couldn't hear the "F" sound. We were there for one week. It was so hot and did lots of walking thankfully my mom rented a electronic wheelchair which helped when my legs hurt. I had trouble outside in the park when music was playing while we were eating didnt realize I was yelling because I couldn't hear myself talk. Then I realized when someone said to me " YOUR TALKING TO LOUD." I was wondering why they were yelling back LOL. I didnt change any programs even the noise program because I didnt think I was on the go all day long. I'm wondering if that would have made a difference. The last two days was pouring rain like crazy. First it drizzled for a little it was nice not having to worry about my processor getting wet. At first I was panicking but it didnt really get wet at all because I had my hand over my implant. Finally after ten different stores I found this WATERPROOF money holder. This came in handy I put my implant right in there and it was fine. Hearing most of the disney music was awesome hearing almost every word. My favorite part was the BEAUTIFUL CASTLE and the PARADE. Being able to hear on this trip was even better.

Playing in the pool with my niece was awesome. Being able to hear her playing in the water and babbling away. I told her that she cant splash her aunt. I wore my implant for about 5 minutes. I wanted to experience what the sound in the water is like then I took it off. I was standing up I wasn't in the pool only my feet were because I was nervous.

School starts in September I cant wait to go back and finish my degree. It has been 5 years. I am very excited to go back... this is going to be another experience being able to hear well in a classroom setting. Something new! I will still have CART and and interpreter.

Next month I go back for my second 3 month CI EVALUATION. I cant believe its 5 months since ACTIVATION. It's amazing. Im going to find out if I am a candidate for my Left ear.

Until then I hope you all are having a wonderful summer! Enjoy it and stay cool. It's very hot here in NY.

Hugs-
Danielle

Hearing Aid Ban Forcing out NYC Police Officers

2011-06-30T23:53:00.005-04:00

Read this article:
Ban on Hearing Aids

Here is a letter Brenda from Hearing Loss Association of America wrote.

Hearing Loss, Misunderstood and Stigmatized

I am happy that a few people sent letters because this is not fair at all. This is unacceptable and its Discrimination and to be honest this can be a BIG LAWSUIT FAST!!!! This is crazy...

What do you think about this? Feel free to leave comments.

Hugs-Danielle

Are you prepared in case of an Emergency?

2011-06-30T00:45:00.003-04:00

Are you prepared in case there is an Emergency?

Some countries have a relatively high risk of a natural disaster or especially living on a ring of fire.

For Cochlear Implant users and their families, there is a need to think about and prepare for ‘surviving’ without some of the support that is normally used to maintain and operate their CIs. Here are a few tips and recommendations to get prepared.

1. In the recent disaster, your local CI center was able to return to providing supplies of batteries quickly. If they weren’t, what can you do?

It is a good idea to always have one box of batteries left. So request more batteries when you get down to that last box. One box will give at least 20 days of operation (for a high load bilateral CI user).
If your CI Center is not able to supply batteries, contact other Cochlear Implant Programs. You may find your Deaf Adviser/teacher of the Deaf has a small supply.
You may be able to contact another CI user who is able to spare some batteries.

2. We have no power. How do I dry my CIs?

One method is to use rice. Rice naturally absorbs moisture. You will need a plastic container that seals (like an ice cream container), an open top container to hold about half a cup of rice (a small cup will do) and a clean handy towel (to place your CIs on). Put the container of rice on one side of the bigger container and the handy towel on the other side. Place the CIs on the handy towel and close the lid on the bigger container. Leave over night and your CIs will be dried.
Another option is to use an inverter to power your drying kit off a car battery. An inverter or solar power would be suitable and would also allow you to charge your cell phones.

3. What happens if my CIs/HA's are destroyed or lost in the disaster?

Contact your CI center ASAP so that loan processors can be supplied or backup if you have one.

4. What happens if I am separated from my child or family member for a few days (ie they are at school or workplace when a disaster strikes)?

It’s a really good idea to have a small supply of batteries stored with your child (ie in their school bag).You should make sure you know what your child’s school’s disaster contingency plans are so you can quickly locate your child. All schools must have these plans so ask for a copy.

I found some Helpful websites that have a Checklist so you are prepared.

Hearing Loss Web- Emergencies Plan for people with hearing loss.

Earthquake Tips

FEMA

Please feel free to LEAVE COMMENTS if you have anything else to add!!

Smile-Hugs,
Danielle

Arlene Romoff

2011-06-27T23:54:00.005-04:00

I had the pleasure meeting Arlene at one of the New York City HLAA meetings almost a year ago. Her first book Hear Again was such a great book. Through out the entire book I kept saying " That is me" " how does she know that?" Her journey also inspired me to think about Cochlear Implants. This was when I was recently lost my hearing and was in SILENCE. I didn't know much about implants. I only had one friend with bilateral implants at the time. Then Arlene came out with her second book " Listening Closely" which is about her Bilateral Cochlear Implant experience. Arlene was recently on TV to talk about her hearing loss here are 6 videos that are captioned which is now on YOU TUBE.

Arlene has her own Blog that she just recently started check it out Listen to Arlene

All Video's are CAPTIONED! You dont have to do anything the caption is on the video.

Have a good night!

Risk factors that causes Hearing Loss

2011-06-24T01:05:00.004-04:00

July 4th is around the corner. Do you use ear plugs while your outside watching fireworks all night? If not I wanted to make sure you are aware how dangerous fireworks are to your hearing. Even if you work in a loud environment ( concert security, crane operators, pilots, etc you can end up with a hearing loss.

Protect your hearing by either wearing ear plugs which you can get at any local store or buy Earmuffs online. They are expensive but if you work in a loud environment everyday for hours a day, you should consider getting something to protect your ears.

Go to the Mayo Clinic and this website best describes Hearing Loss Risk Factors!

Parents- make sure your children dont blast their CD player's or I pods. This can also cause a hearing loss.

Parents- You can also check out Noisy Planet which is a great website that has lots of resources for children on how to protect their hearing.

Zephyr - Dry and Store

2011-06-23T18:38:00.004-04:00

I never used the Dry and Store with my hearing aids before. With my implant every night before I go to bed I put my CI in the dry and store. What I like about mine is that it is convenient to travel with. I received this in my kit when I got activated.

Below is information from Cochlear's Website.

Summer’s here and that means fun in the sun! It may also mean humidity, sweat and splashing water. No worries; the Zephyr, which came with your system kit, will help you care for your sound processor and keep up with your summertime adventures, too.

Be sure that your hearing is always at its best; use the Zephyr nightly. It is an electrical appliance that helps remove moisture from your sound processor. Place your processor in the Zephyr overnight or for storage when not in use.

Questions about using your Zephyr? Follow these simple instructions:

Wipe your sound processor with a dry, non-abrasive cloth.
Activate the Dry-Brik® II desiccant by removing the foil cover.
Place it in the Zephyr.
Place your sound processor in the Zephyr.
Press the power button on the side of the Zephyr to start the drying process.

You can buy Dry Brick desiccant's on Cochlear's website for $9.95

The Zephyr uses a Dry-Brik II desiccant that lasts up to two months*. Unopened Dry-Briks can be stored for up to one year with the foil cover intact, ideally in a plastic bag in a cool, dry place.

ATTITUDE

2011-06-22T00:03:00.002-04:00

This was given to me at one of the HLAA workshops.

ATTITUDE -By Charles Swindoll

"The longer I live, the more I realize the impact of ATTITUDE on life. Attitude, to me, is more important than facts. It is more important than the past, an education, than money, than circumstances,than failures,than success,than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company.. a church..a home. The remarkable thing is that we have a choice everyday regarding the ATTITUDE we will embrace for that day. We cannot change our past.. we cannot change the fact that people will act in a certain way. The only thing we can do is play the on string we have, and that is our attitude.. I am convinced that life is 10% of what happened to me and 90% of how I react to it. And so it is with you .. we are in charge of our ATTITUDES.

HLAA Convention 2011 Experience

2011-06-21T22:55:00.004-04:00

Last week I went to my first HLAA Convention. I was so glad to finally meet many of you that read my blog. I was also glad to meet new friends as well as some young adults. Then finally I met my friend from the UK Katie. This was her first time in America!

When my friend and I first go to Washington D.C. we decided to tour the first day to get it out of the way. I saw the Capital and we even went to a few museums. Unfortunately my friend and I didn't get to see the White House it was just way to much walking. It was a great experience. I noticed alot of differences from NEW YORK to D.C.

1- Its very clean in D.C. No LITER ANYWHERE!!!!!! In NY there liter everywhere you go.

2- Security is crazy!!! Even for the smallest museum her and I went to you had to be padded down and go through a detector. They didn't believe I had an implant because I didn't want to go through the detector. I had to show proof of course. They are very strict. Even to go to a CAFETERIA to eat the security pats you down like crazy.

3- METRO train is very confusing at first because its not like NYC how everything is close in DC everything is in DISTANCE so looking at this tiny map we had in our hands we thought it was like three blocks away ended up being 8 blocks away.

4- NO CAPTIONS on the train in NY we have CAPTIONS ON THE TRAIN. ( I couldn't figure out what the speaker was saying.) If you look outside every stop said's where you are.

5- NO SIGNS! Signs are very difficult to find in D.C.

Then my friend I finally went back to the hotel to go to some workshops. I learned alot from them. I was happy I was surrounded by people just like me everywhere I went. I even saw people using ASL. I wasn't expecting ASL at all. It was awesome. I didn't have to explain that I was deaf and how I wear a Cochlear Implant in order to HEAR. All of them just understood.

The Exhibit Hall was nice many different booths such as : Cochlear, Ab
( Advanced Bionic), Harris Communications, ZVRS, Captioning, and so much more. Especially this one section called " The Hearing Aid Museum." I saw hearing aids from 1930's. Pretty interesting.

Finally I got to meet my NEW FRIENDS from COCHLEAR. I look forward to working with all of you and starting a young adult group as soon as possible. I will definitely be at the COCHLEAR 2013 CONVENTION!

About the Workshops: I wanted to share with you one of the many things I learned. The workshop was called " Mapping." I learned how every Implant has different channels to control frequency's ex: med-high. Base on what you hear your audiologist can control it. I also learned how to talk to your audiologist by using different terms to help your audiologist have a better understanding of what your hearing and what bothers you.
For example: " In the restaurant hearing speech very well but dishes are clanking really hard." Another example is " I couldn't hear what the waiter/waitress was saying to me."

During the workshops, for the first time in my life I was taking notes just like everyone else. I never done that before. When I'm in a classroom setting usually someone else is taking notes for me. I was so happy I was able to do this. I was able to hear CRYSTAL CLEAR what the speaker was saying because she had a microphone. I picked up most of the words. I realized I just wrote 4 pages of notes without even looking up ( maybe twice I looked up.) How cool is that? I never done that before!!!!It was a great experience. I was so happy and proud that I was able to do this. CART was also provided.

I had to look at the CART because I thought the audiologist who was talking said
" CHRISTMAS" but it didn't make sense to me then I saw what screen said "CRISPNESS." Thing like this you have to tell your audiologist so they can make a change for you.

ALSO- KEEP TRACK keep a pad/pen with you at all times. Write down things you are experiencing, what your hearing, even if a question comes to mind.

Then I went to one of my favorite places Gallaudet University which is a deaf college in D.C. About 5 years ago I toured this college and was the best experience of my life. I couldn't believe the change when I got there were more buildings. They are renovating. While I was there I saw a beautiful RAINBOW walking near the BISON field. What a beautiful sight. No one was around because the time we got there it was 5pm everything was closed.

I am thinking of going to Gallaudet as a student sometime in 2012. I feel that this is where I belong. People will get me there and people who are deaf will be there and this will improve my signing. Being in NY its not so easy finding deaf people or people with implants. It's time for a new change. I need to do this for myself. I already applied. To be continued...

Once again I had the best experience at my first HLAA Convention!

Have a wonderful Summer!

Evaluation Letter

2011-06-11T01:06:00.002-04:00

Yesterday I received a letter in the mail from my clinic. At first I was worried because I wasn't expecting anything in the mail.Once I opened it it said Audiological Evaluation. I knew I did so well because my audiologist said so. This is what the letter said's.

History: In February 2011, I was implanted with the Nucleus System 5 Cochlear Implant in my right and I received the external components one month later. Her primary mode of communication is through spoken language; she also uses ASL.

IMPRESSIONS: As part of today's evaluation, Danielle's unaided hearing was tested in both ears. She was tested by means of standard audiometry with pure tone stimuli. Results revealed a mod-severe sloping to profound hearing loss for the left ear, and an essentially profound hearing loss for the right ear from 250-8000HZ.

Technology: Danielle came to this evaluation using a MAP in her CP810-speech processor composed int eh ACE processing strategy in her right cochlear implant. Responses to narrow band noise were considered to be of good reliability, indicating threshold levels of 10-20 dbHL!!!!!! for the frequency range of 250-6000 HZ with her CI. These findings indicate that she has full access to SPEECH AT NORMAL AND SOFT CONVERSATIONAL LEVELS when using her Nucleus 5 cochlear implant.

Speech Perception: Speech discrimination test used and scores are as followed:
CNC WORD LIST - 80%
AZ BIO Sentences: 88%

Word recognition was assessed, in quiet, using recorded CNC word lists. Results were judged to be good. Recorded AZBIO sentence scores in quiet were judge to be very good and in noise were judged to be poor. These findings indicate that she has made progress with her cochlear implant over the past three months.

I wanted to share this with you because it made my day and I'm so happy I am doing well considering it has only been 4 months. Isn't this amazing???

PS: My last post about how day of evaluation went I wrote that my audiologist wants me to wear a hearing aid in my LEFT ear. However because of my situation I decided just to hear with one ear. I dont want it this way either but my OTICON EPOQ doesn't benefit me and its brand new rarely used it. So... once vacation and everything settles down I will go for testing to see if I'm a candidate for an Implant for my LEFT ear. I sure hope I can go bilateral someday.

Hugs- Danielle

Healthy Body Healthy Mind

2011-06-10T13:32:00.003-04:00

I noticed on Cochlear's website they added a new link as well as a video about hearing loss and cochlear implants. It is NOT captioned.

This page Healthy Body Healthy Mind has lots of resources for those of you that are considering Cochlear Implants.

Conquering Silence: Restoring Hearing

New TV Series called " Switched at Birth" on ABC FAMILY

2011-06-08T17:47:00.006-04:00

There is this new show called " Switched at Birth." I found out by flipping through the channels on TV today when the teenager started signing it caught my eye. This show is NOT about DEAFNESS* but there is a teenager who happens to be " DIFFERENT" (deaf) in this show. I thought it was a good episode. You can watch it online for free if you dont have this channel. There is captions below the video it will say CC on the LEFT side and the caption will appear.

Daphne is the teen who is deaf on the show. In real life she is hard of hearing NOT DEAF she is also fluent in ASL. Here is her Bio.

Switched at Birth

Marlee Matlin will be on this show June 20th.

What do you think about this show?

My first 3 month Cochlear Implant Evaluation

2011-06-07T22:48:00.004-04:00

Today was my first CI evaluation since it has been 3 months with my implant I had to be tested in the booth. I was really nervous. My audiologist first had me listen to alot of BEEPS and TONES. Then after that she put on a cd she said to repeat the sentences even if I dont get it all just say " what you hear". I heard every sentence! She told me I did so well that she had to put in a different CD and made it a little harder for me by adding background noise. It was rough. At first the person speaking was all jumbled after the second sentence I was able to hear most of the words. At first I heard the sentence " That is the wrong thing to say." " The boy ate an apple." "Would you like to go out to dinner with me sometime." " I like to ride my bike." Then it got harder and harder then I wasn't able to hear the entire sentence so I started to get upset and frustrated. I kept pushing myself closer to the speaker. Literally straining to try and come up with what the person said. I was able to get two words out of each sentence. Overall, I am so happy I did very well.

My audiologist told me that I should start to use my hearing aid in my LEFT ear now since its been 3 months using my cochlear implant. The only problem with this situation is that this clinic doesn't have an audiologist for Hearing aid patients in ADULTS only children. So I have a few options. A: I either go to a different audiologist for just my hearing aid. B: I buy PHONAK which is the only hearing aid my clinic has and she would be able to program it for me as well as my CI. The problem is insurance and money. I just spent alot of money on the BRAND NEW OTICON EPOQ hearing aids last year. Only worn them 3 weeks tops. I have alot to think about.

Then she tested me in the booth for my Left ear only because I was told her I was having trouble. She said my hearing is still the same in that ear since I was tested four months ago. Then she also TESTED my implanted ear WITHOUT! I SWEAR WITHOUT the CI.I heard something it was so loud though and mostly vibration. I had some HEARING! I thought I was dreaming. She did tell me SOME PEOPLE do have A " LITTLE hearing left" and just wanted to see. Sure enough I do. COOL!

Finally we went back to the room testing was over. She couldn't believe how well I was doing. I didn't even HAVE TO LOOK AT HER!

I once again told her its frustrating I cant wear my CI with my hair down. Told her to get out the huggie once again and this time I took off the snugfit she had some other audiologist put the huggie on my implant and it WORKS! SO FAR. My implant finally stays on my ear! I didnt try it with my hair down yet so we will see. I think the huggie is a bit small but she said NO! My ears are so small its ridiculous. But with the huggie on my ear looks weird and it sticks out more and its RED. Im going to ask my friends at the convention next week many of them wear a huggie with the implant. Here is a picture of how it looks. I think its on wrong because my ear feels all twisted and uncomfortable.Well- its better than nothing at this moment. My implant stayed on all the way home but I dont want to look weird. Any suggestions??

My audi told me there is no need to keep changing my program because I'm doing so well with the program I am on now. I am on program four and now that is called an EVERYDAY program which I will probably use all the time. She also put on a NOISE program as well as a MUSIC and a ZOOM program. Pretty neat. My audiologist advice me to not change it so often just as needed.

Here is today's audiogram. With my cochlear implant I am hearing 10db! My Left ear is still severe soon I will be using a hearing aid.

I cant wait for next week! My first HLAA Convention. I hope to get to meet many of you in D.C!!!

Smile-Hugs- Danielle

History of Pediatric Cochlear Implantation

2011-06-01T13:13:00.002-04:00

Rachel is the founder of Cochlear Implant Online. Her website gave me alot of hope and many resources about Cochlear Implants before I had my surgery. She made this beautiful video I wanted to share with you. Thanks Rachel!!

How do you explain to a child that you are deaf?

2011-06-01T03:08:00.002-04:00

As I was sitting home relaxing alone Memorial Day weekend, I thought about how to explain my deafness to my 1 year old niece when she gets older. At the moment she knows that I have a " BOO BOO" on my ear. She goes to take my processor off and I say " You can't take boo boo off because I wont be able to hear you." That actually does work. She is always staring at my processor. She thinks its a toy! Eventually when she reaches the appropriate age I want to explain this to her but I dont know how. This will be my first time so I'm nervous.

Before I had my cochlear implant I was struggling and I became so depressed and upset because I couldn't communicate with my niece or anyone. That was actually the first time in my life that was a " WAKE UP CALL" to do something about this. Its hard because I have been ill for a few years and I wanted just TO HEAR like EVERYONE ELSE. I honestly didn't think I was going to get MEDICAL approval. It came to a point where I couldn't take it anymore. This had to be done. I struggled my entire life and I didnt want to struggle anymore. I realized I was going to miss out on EVERYTHING she saids. I couldn't take that heartache.

The night before I was implanted, I decided to write her LETTERS and put them in a special box for her so she can read when she is older. My first letter was 3 hours before I was leaving to go into the city to sleep at the hotel before surgery. Up until now every month I write her letters. I remember crying my eyes out just writing the first few sentences to her because I couldn't hear her voice. It was heartbreaking.

My niece is growing up way to fast for me. She is going to be 2 year old soon. It feels like yesterday she was born. Now she is talking saying words and trying to have a conversation with me. I HEAR IT ALL.I LOVE EVERY MINUTE OF IT. Hearing all this brings so much joy into my life. I AM SO THANKFUL to be ABLE TO HEAR HER!

So my question for you is what do I say to her and at what age should I explain this to her? I hope I dont have to wait till she's in her teen years.

I was also thinking about buying this book at the convention even though its not for her age group but she LOVES TO READ BOOKS and flip through them.

The book is called " Sunny and her Cochlear Implants" by Susanna Dussling.

Any feedback is greatly appreciated. Thanks :)

Marlee Matlin & John Rich from Celebrity Apprentice

2011-05-29T20:38:00.002-04:00

I watched this show because Marlee Matlin was in it. I thought she did an amazing job on this show. She won 1 MILLION DOLLARS for Starkey Hearing Foundation in a few episodes back.

Here is the last episode of Marlee signing For the kids. Its not captioned but for those of you that know ASL you can watch. I thought this was done nicely. I was a bit surprised Marlee didn't win on the last episode.

Smoke Alarm Designed for the Hearing Impaired

2011-05-25T22:54:00.004-04:00

Remember my old post from a few months ago about Fire Safety at my local HLAA chapter? Well this caught my attention as I have friends all over the world that read my blog.I cant stress this issue enough. The other day I received this awful email from my friend and I wanted to show this with you all because I want you to be AWARE that it is so IMPORTANT if you have a hearing loss that you have the proper equipment for EMERGENCIES!

Click Here

It is about a person who didn't have smoke alarm. Didnt realize there was a FIRE. Couldn't even hear her own child. SHE WAS DEAF. It was only a few days away until she was receiving her Lifetone Detector. The video itself is NOT CAPTIONED however BELOW the video is written word for word.

I hope you all PURCHASE this detector!
For those of you that want to purchase this LIFETONE alarm clock
CLICK HERE It is on sale for $140.00 usually it cost around $250.00 It is expensive but it is a LIFE SAVING detector that will save your life! This product will last you many years and is also a Clock, and has a two year warranty.

****PLEASE NOTE: THAT THIS PRODUCT WORKS ONLY IN THE US****

If you live OUTSIDE of the US and live in UK you can purchase Alarms at
Connevans Limited

I am so thankful for FDNY because they did provide me and over 50 other members at my local HLAA chapter a free LIFETONE alarm clock! THANK YOU THANK YOU!

Have a great night!

Cochlear's Phone with Confidence

2011-05-24T00:02:00.005-04:00

Tonight I decided to use Phone with Confidence that I found on the cochlear website. You call an 1800 number and you practice listening with the phone they give you choices to choose from. I first did the Word List that has four words. I then listened to a full passage for the first time. Being this was my first time I didn't know what to expect so I used my personal audio cable and plugged it into my cell phone jack. I heard everything it was crystal clear. This took about 7 minutes its a great way to practice using the phone.

If you are interested in practicing with the phone using your cochlear implant go to cochlear's website: Telephone with Confidence GOOD LUCK!

Each day there is new words and passages you just click on the date and you follow the PDF. Tomorrow I will NOT use the audio cable I want to try and see If I can hear without the audio cable. All you do is put the phone up to your ear.

AND FINALLY!!!Some Great News.. Here in NEW YORK CITY there is going to be a free service for emergency alert text messages. Below is directly from Hearing Loss Association Website

FCC, FEMA Unveil Emergency Text Messaging System May 17, 2011
Washington, D.C., New York, NY – Mayor Michael Bloomberg, Federal Communications

Commission Chairman Julius Genachowski, Federal Emergency Management Agency Administrator W. Craig Fugate, top executives from AT&T, Sprint, T-Mobile and Verizon and others convened at the World Trade Center site May 10, 2011 to announce PLAN--the Personal Localized Alerting Network. PLAN is a free service that will allow customers with an enabled mobile device to receive geographically-targeted, text-like messages alerting them of imminent threats to safety in their area. This service will be available in New York City by the end of 2011, at least two calendar quarters before the rest of the nation.

PLAN ensures that emergency alerts will not get stalled by user congestion, which can happen with standard mobile voice and texting services. Authorized government officials can send messages, which participating wireless providers then push using their cell towers to enabled mobile devices in a targeted geographic area.

I ALSO HEARD SOON** WE DON'T KNOW WHEN, THAT YOU WILL BE ABLE TO CALL 911 (EMERGENCY) VIA TEXT. THIS IS ONE OPTION** THAT NEEDS TO COME OUT ASAP. JUST THINK "WHAT IF" YOU ARE IN NEED OF HELP ASAP AND YOU CANT HEAR ON THE PHONE BECAUSE YOU ARE DEAF OR CANT SPEAK. 911 WILL BE THERE FOR YOU BY TEXT MESSAGING. WHO KNOWS WHEN THIS IS GOING TO COME OUT! BUT I KNOW ITS IN THE WORKS.

Have a wonderful night!

Being Misunderstood...

2011-05-22T00:24:00.008-04:00

For those of you that know me and follow my journey many of you know that with a Cochlear Implant/ Hearing Aids either your child or yourself DOESN'T HEAR EVERYTHING with the device on. We all know THAT IS NOT THE CASE. I KNOW ALL OF YOU WILL AGREE WITH ME ON THIS!!!!

People ALWAYS ASSUME JUST BECAUSE I HAVE MY COCHLEAR IMPLANT ON means that I CAN HEAR THEM! Even before I had my implant, wearing hearing aids people always thought since I have it on I CAN HEAR THEM FINE! " you have your hearing aids on." I would thank to myself " YEAH AND?" NO that is NOT THE CASE. I wish it was.

Thankfully I got very lucky hearing so well with my implant being that its only 3 months but I am still learning, and have along way to go. Its only the beginning. There are times I need someone help.

For ex: Last Night I went to dunkin donuts and I couldn't understand the cashier that didn't speak English so I asked the person that was next to me if he could repeat what he was saying.

Hearing people I am tired of being misunderstood I really am. If I have an Implant on and If I don't respond to you that means I did not hear you. I am not ignoring you.

I understand that you wont ever have a clue what its like to LIVE WITH DEAFNESS or HEARING LOSS until your in my shoes.... but please stop saying to me
" YOU HAVE YOUR IMPLANT ON" because it does make me feel awful.

This happened to me 2x yesterday. I just dont want to be misunderstood anymore...

The worst part of it all is I talk like a hearing person you wouldn't know if I was deaf until I told you. This doesn't help much in this kind of situation. Sometimes I do think that If I didn't speak so well that It would help remind people I cant hear. Although I am very thankful for all that speech support I had since I was a baby.

Have you ever felt misunderstood about your hearing loss?
Feel Free to leave comments would love to hear from you :)

TAKE THE MILLION EAR CHALLENGE TODAY

2011-05-21T21:49:00.003-04:00

MAY IS BETTER HEARING & SPEECH MONTH!

Please take a moment to take the MILLION EAR CHALLENGE TODAY.

*PLEASE NOTE* BELOW WAS NOT WRITTEN BY ME IT WAS TAKEN FROM COCHLEAR'S WEBSITE!

About the Campaign
Have You Heard? May is Better Hearing and Speech Month, a national event that provides an opportunity to increase awareness of hearing loss and available hearing solutions. Cochlear Americas is proud to support this important event and partner with communities to spread the word about hearing loss and solutions to restore hearing.

This year's campaign theme "Have You Heard?" reflects our commitment to the hearing loss community and the passion for bringing the gift of sound to those with hearing loss. Few people are aware of this growing public health issue, its social and economic impact and the availability of hearing loss solutions. One out of every ten people in the U.S. is estimated to have hearing loss.1, 2 And, an estimated two million people in the U.S. may be candidates for implantable technology, but approximately only 5 percent of people who can benefit have been treated.3, 4, 5, 6

Million Ear Challenge! We are launching a campaign challenging the public to help us spread the word about hearing loss and hearing loss solutions to one million people in 31 days! We want to encourage as many people as possible to get involved in this effort and inspire others to help change the lives of those who may be struggling with hearing loss.
Each year Cochlear donates more than $200,000 in products and accessories to people in need. When we reach our goal with the Million Ear Challenge, we'll celebrate this achievement by donating up to an additional $150,000 in products and accessories to people in need. Help us spread the word.

Traveling with Disabilities

2011-05-20T14:30:00.005-04:00

Are you going away this summer? For those of us with hearing loss here are a few websites that can help you when you travel.

Hearing Disabilities

Travelers with Disabilities and Medical Conditions

How to Get Through the Line Faster

Learning many new things about my Cochlear Implant

2011-05-20T09:46:00.003-04:00

So much has been going on. Remember my last post I said my backup processor that was brand new, never used just didn't want to turn on? Well.. turns out that I am getting a refurbish implant regardless if you just got activated that's what you get. I didn't like the sound of that at all because I just received it and already something isn't working. Also because that is not what I was told. Yes I understand that's life but It just came out of the kit! LOL. I was originally told that I was getting a brand new one well good thing I checked online and I found out myself that it was going to be refurbished. They lied to me over the phone :( I was a little disappointed because one person tells me one story and then the other person tells me a different one. Whatever. It's over with it is what it is. I didn't even think they would have refurbish processors yet being that is so NEW*. Only my luck lol. I am still waiting patiently for my backup processor. I have to send the old one back and they will see what the problem is. My audiologist called yesterday and gave them my mapping. So I should have my backup soon within a few days. It was alot of stress and calls but thankfully it is taking care of and someone finally knew what they were talking about on the phone! I have learned alot though and this WILL NOT STOP ME FROM MY HEARING JOURNEY! In life you live and learn yeah I was a bit frustrated because I had to many different stories going and I'm new to this and I didn't know what to do. Its all taken care of so now I am happy once again.

I learned new things too during the last few days. I am going away 2x this summer. The HLAA Convention will be my first trip with my implant. I have alot of gathering to do I DO NOT know what equipment I need to bring for my implant. I don't want to bring my rechargeable battery pack and then the charger just to recharge my REMOTE! It is alot just to charge a small remote. So I was hoping that there was another alternative and there is.

Nuc 5 users in your kit you get the Nucleus Remote Assistant Charging Kit inside has a USB cable and a wall outlet plug. All you gotta do is bring your USB cable and the small wall outlet plug. Plug one side into your Remote Assistant and the other into the wall outlet charger then plug it into the WALL. It is so Simple! If you TRAVEL with a computer you can also charge the remote this way by simply putting the USB cord into the computer then the other piece into the wall outlet charger then into the wall. However, I was told doing it this way MAY TAKE A LITTLE BIT LONGER TO CHARGE! So keep this in mind. I don't know if that is the case. I will get back to you on that. I did test it to see if it works by plugging it into the wall and the remote lets you know its charging. The less stuff I bring the better.
Here are two pictures for a better understanding if you are confused.

Another thing I learned is Warranty Information. It can get CONFUSING! If you look in the book DEPENDING on where you live US. 3 YEAR warranty for processor then 1 year warranty for coil, coil cable, battery etc. Then friends on Facebook said that Cochlear gives you an additional extra 2 years for the Coil, Coil cable and so on. I called to double check sure enough Facebook friends are correct. So that's great because I got worried because the implant already failed. I wanted to make sure I know this warranty info down pat and in the book it said different.

So depends on where you LIVE! I live in the US! You get 3 years for the Processor & 3 years for the coil, coil cable & coil magnet. HOWEVER...... You only get 1 YEAR yes 1 YEAR! for the REMOTE ASSISTANT! After that 1 year there is NO* INSURANCE to purchase for the REMOTE. If the remote breaks out of the warranty you can just purchase a new one on the store. It is alot to know. It also can get very expensive once you are OUT OF WARRANTY. So my advice for all of you... ONCE YOUR WARRANTY IS UP... Call the company and find out how much the warranty plans are for the year. For ex: Once my 3 years is up Im going to call cochlear and I'm going to purchase a 1 year warranty program. Unfortunately you have to pay for it EVERY YEAR. So the warranty only lasts you 1 year you can always renew it after the year is up.

I wanted to TELL YOU ALL that DO NOT LET THIS GET YOU DOWN or DISCOURAGE YOU. To be honest I got upset because I was frustrated with different information I was told. It is overwhelming but I wouldn't change it for the world. Just like my friend said CAN YOU HEAR? and I stopped for a second and realized okay she is right YES I CAN HEAR VERY VERY WELL WITH THIS IMPLANT & NOTHING WILL STOP ME FROM MOVING FORWARD. So you live and you learn like I said.

So keep in mind this happens & we have to be thankful we even have this technology out there for US. I don't want you to sit there and be like I DON'T WANT THE IMPLANT NOW BECAUSE IM READING this. DO NOT LET ANYTHING STOP YOU! IF YOU WANT TO HEAR.. DO IT its the best miracle that ever happened to me and I couldn't be any happier.

Wthout all your help and answers on Facebook thank you CI friends your support has been amazing and I cant thank you enough really. I don't know what I would do without all of you. Thank you also for the nice emails. I am glad many of you enjoy reading my blog. This is what its all about you meet so many people around the world just like you that deaf or hard of hearing and we learn so much from each other. I cant wait to meet many of you!!!We are going to have a BLAST!

And of course I heard a WHISPER for the first time It was so low so I had to pay close attention BUT I HEARD IT. I'M telling you I NEVER IN MY LIFE with my hearing aids I NEVER heard A WHISPER BEFORE with my mod-severe loss. It was a cool feeling to hear that. I also heard my fan didn't realize where the sound was coming from but then I realize that was the only thing on in my room.

It gets better and better everyday and I am the happiest person ever! I really am. This is the best gift ever to be able to hear especially my niece babbling and trying to have a conversation with me is PRICELESS. She finally signs MORE & BALL !!!!!! YAYYY all my hard work has paid off.

Enjoy this beautiful day!

Mapping #4 Results

2011-05-13T13:02:00.003-04:00

Yesterday on May 12, 2011 I went into the city for my 4th mapping. I have only been activated for 2 months. First my audiologist put me in the sound booth for about 5 minutes just to see if I’m hearing sounds. I heard it all. I hear in the normal range on the audiogram which is 0-10 decibles with my implant on. I am so amazed how well I am during. It is a miracle. She couldn’t believe that I didnt even have to look at her to have a conversation ( old habit). My audiologist said that she hasn't seen amazing results since she started at the clinic.
Then we went into the room and I asked her questions. First I told her that my implant falls off my head when my hair is down and because my curly hair is so thick sigh. She showed me what a HUGGIE was and we tried to test it out but it was too small and it didnt fit my implant. Then I told her my backup processor which I never used YET that was sitting in the case still WONT TURN ON. We both tried to figure out the problem she tested it with the coil, put new disposable batteries in, changed batteries, even put it on the computer and it would just not TURN ON! After about 5 tries we gave up and have no idea why it wont turn on. Maybe its the light? but it cant be she said because you hear no sound. That is odd. It has only been sitting in the everyday case for 2 months! I called cochlear they are sending me a new one right away. They are going to map it all this way I don't have to run back into the city. Good thing I listened to my friends that said GO GET YOUR BACKUP. I would have never done that if my implant wasn’t sounding weird for about 20 minutes the other day. I should receive my new processor in about a week they said.

I told her I want the mapping a little bit longer but not too loud so she tweaked it a little bit. Then she said lets practice so hard words say the word AH-BA, AH-CA,
AH-ZA, AH-MA, AH-TA. I got them all correct even with the loud city noise and the window opened that we tried to shut. AMAZING! SIMPLY AMAZING.

Lastly she said next month before I go to the convention she wants to see me. She is going to do a full evaluation on me this time to see how I have been doing for the past 3 months. She is also going to put on a few new programs such as “ NOISE PROGRAM”. It is still too soon that is why she didn't do it today. She wants me to hear everything get used to all the noise first. So next month im excited she is turning that on.

I explained to her I was having trouble at the restaurant for mother’s day. I was able to hear my brother in law across from me but not my mom sitting next to me. It was so loud in that restaurants. She even said people that don't have a hearing loss have a problem hearing at restaurants. Overall Im doing amazing. I am so happy. The best decision I ever made.

Yesterday when I left the office I used the phone to call my mother to tell her the news. I heard her so much better. All I did was put the phone to my ear. PRICELESS!

On June 7th I will be going for another mapping as well as the first full evaluation.

Thank you all for all the support!

Have a great weekend

A Play in the Life of a Captioner - STAGETEXT

2011-05-11T16:18:00.000-04:00

Check this out this is interesting. It is Captioned.

I love going to shows that are captioned or interpreted. It is very convenient. I thought this video was interesting because I didn't know the captioner takes time out and goes to the play to practice. At first I thought the captioner just goes in an hour before showtime to get started.

Have you ever been to a captioned show before? If so what was your experience like?

Hearing New Sounds...

2011-05-09T20:01:00.002-04:00

Yesterday I heard this buzzing noise in my ear for about 10 minutes. I had no idea what it was where it was coming from. My windows were closed. I was confused and got worried. A friend of mine said " get out your backup processor" try that with the rechargeable's and a disposable batteries. For about 10 minutes or so couldnt put my implant on. I have no idea why. One friend said it may broken so I started to panic. I never wore my backup yet EVER. She also gave me the advice to WEAR it every now and then. I didnt think... I didnt know. Im still adjusting and new to this. I still cant put it on. So today I found out thanks to Facebook that I HAVE TO PAIR the implant. First I have to take the first implant off the remote then pair the second implant. I wasnt told this. I do remember my audiologist putting the backup on the computer and testing it. Thankfully Im going on Thursday for my mapping. PHEW. I emailed her as well. Good thing I checked! I still couldnt pair it im having a problem hopefully itll be fixed thursday.

Other than that Im hearing new sounds. Here is a short list.
-my footsteps as Im walking
- Birds and I think it was the wind with the windows shut in my bedroom. I think it was the wind im not quite sure.
-MUSIC- I hear all the words all the beets its amazing to all my songs on my ipod every one of them. I love my audio cable wire that I put into my implant and ipod in order to hear the music in my ears. AMAZING. I never heard music so well in my life! Even songs I dont know it takes me about 5 minutes to process the new song. Then I repeat it and I hear it fine.
-My niece screaming my name " DDDDDD" with my bedroom door shut. I LOVE IT!!!!!!!!
- Conversations outside
- the door or a car passing by with the windows open in my room all the way on the 2nd floor.
-an airplane
- Someone pulling in the driveway is a new one or shutting the car door.
- the ice cream truck from my bedroom with my windows shut. Soo neat! never heard that before.

I haven't been practicing at all. So much has been going over here but I put on my implant everyday and I just go about my day. I am less stressed as I mentioned before. There are times that I cannot hear you and I still WILL NOT SAY " i cant hear you" I don't know why I cant just say it!

Yesterday was Mother's Day so everyone went out to brunch. I was able to hear my niece across the table. I heard my mom talking about something but I couldn't really make out what she was saying. I was able to communicate fine with my sister and brother in law across from me. It was really loud and packed at my cousins restaurant. I thought I did really well though. I was able to understand most of what everyone was saying. This was my first time at a restaurant with my implant.

On Thursday when I go for my mapping, I'm going to ask my audiologist to put it louder. I am also going to ask her if she can please put the background noise option on my remote. For example: when I'm at a restaurant I can touch my remote and it will block out the background noise. I really want this program on but my audiologist said it is still too early. She will turn it on in a few months. I feel like I'm ready now. I think it will help me. I'm going to ask her again this month.

I am comfortable on this program but again I think I just need it LOUDER. I am hearing more and more each day. This has been an amazing journey. I am looking forward to going to my first hearing loss convention ever in June! I hope to see many of you there!

Time is flying like crazy and I cant believe that it has been 3 months with my Implant.

Another thing is my ears are so tiny like I said before. The implant falls off alot. I tightened the magnet as far as it can go. My curly hair is thick as ever. So I cant win. My audiologist did say on Thursday she will show me something and if im comfortable to buy it but I found out that this is used on children! I dont want to wear that item. I cant remember the name but i saw it online and I really dont want to wear that. I dont know of any other options but Im going to dry a headband. I have the small snugfit on my implant still and I cant use my implant without it because then it will fall off immediately.

I also want to make a note that I LOVE LOVE LOVE my Disposable batteries! I only use 2 and they last about 2 - 3 weeks. Its great. I use mostly my Disposable batteries because I have plenty of them.

Thanks for reading! Have a good night.

ASL MUSIC VIDEOS

2011-05-02T19:09:00.003-04:00

I wanted to share these ASL music video's with you.. hope you enjoy them.

Then I found these amazing ASL Music videos from Madonna University.

Five for fighting: 100 years

Black Eyed Peas

Sara Bareilles- King of anything

Easter was the 1st Holiday with my Cochlear Implant

2011-04-27T22:30:00.006-04:00

I cant even explain how amazing this new hearing journey has been. I wouldn't trade it for a thing!! It amazing how im picking up on all these new sounds so fast. Its AWESOME! I am less stressed too.

Easter was my first holiday with my implant. So much noise and alot of conversations going all at once. This year we had easter at my house. There was about 13 of my family members here. I did pretty well with conversations at the kitchen table. I have been on program 4 for the past few days and it seems LOUDER and much BETTER as far as conversations go. There was so much noise going on in the kitchen while my sisters cooked sometimes I did miss a few words. Mostly I got 97% of the conversation. I feel more comfortable talking to people now. I was able to hear my little cousin who is shy for the first time. I was so happy to hear his voice. I always tell him "Can you speak up because I cant hear you" but hes only ten so he still doesnt understand for the first time I didn't have to tell him to SPEAK UP. I was so proud. I still get nervous telling people that I cant hear or I just pretend to HEAR. I think that habit will always be part of me because at times when my sisters or my parents are talking to me I still wont get the 100% of what they are saying. I dont think they understand that yet either. It takes time but I'm doing very well.

On April 30th, I went to my best friends house for " pasta dinner night" it was the day before her run. She has NF2 and is profoundly deaf. We are all hoping for a cure one day for this AWFUL DISEASE. She has raised $10,000! this year so proud of her and I was so glad she wanted me part of it. There was many family members and new faces. I felt comfortable for some reason with my implant. At first I was nervous because I didnt think I would do well at a large gathering. I got meet a few of her friends that have NF2 that came to support her as well as a few friends she graduated college with. I had a good time. So happy it was a success. Conversations were pretty easy we sat outside used ASL because all of them were deaf. I was able to hold a conversation well with one of her relatives even in a crowded kitchen!

In about a week on May 12th, I go back to the city for another mapping. Im excited have so much to tell her. I feel like it needs to be a little bit louder and hopefully that will be the program I use for awhile since I'm comfortable w the program.

On Sunday May 1st my niece and I were outside and I heard her running or walking.. PRICELESS . I also heard a woodpecker and I didnt understand why or what that was at first making a noise for so long at least 20 minutes. Finally my niece said Bird Bird and we found it! I enjoy having conversations with my niece shes talking more and more.. She loves to talk. She is so smart and getting to big way to fast for me! She runs so fast and I cant keep up lol. Everday I love hearing " Hi... D " haha I love it! For easter I also gave her a mickey and minnie mouse cd that has all kid songs on it so everyday we dance and listen to music. It nice to hear music at such low volume usually I have music blasting at 50 but it was only on volume 10 w my implant on. The best thing is when im in the front of the car and my niece is watching tv I hear the tv in the back all the words when she watches her shows. Its amazing... The one thing that is annoying to hear is the SIGNAL in the car. Its just something im not used to :) yet.

Have a great week..

HLAA WASHINGTON DC CONVENTION

2011-04-15T01:28:00.002-04:00

I wanted to share with you some great news...In June I will be attending my first Hearing Loss convention. I am so excited and cant wait to meet so many people that read my blog and meet new friends as well. I am so honored that I won the scholarship for this convention. I will definitely be blogging about the convention and taking lots of pictures. The convention is 4 days its from June 16th-19,2011 this is the Hearing Loss Association of America convention that is going to be held in Washington D.C. at the Hyatt Regency Crystal Hotel. Plus, I never been to Washington DC before so this is so exciting.

Have a great weekend!

Just a little Update...

2011-04-15T01:11:00.002-04:00

I am doing really well. I started using program 2 a few days ago. It is louder and I feel comfortable being on this program. On Wednesday I heard the birds outside chirping what I heard what ch ch ch ch or tweet tweet and an airplane. Then at night I was walking down the block to put mail in the mailbox and all sudden I heard BEEP BEEP BEEP in my implant. SILENCE it just shut off. So I realized the battery went dead of course. It doesn't give me a chance so It felt awkward being in Silence because I was just hearing noises around me. Today I heard the wash machine, the tea pot on the stove boiling water was so cool took me awhile to figure out where the noise was coming from but I heard it.I also heard music coming from my den which isn't to far from my kitchen but I was glad I heard almost all the words! Today I used to phone again and I did very well. I cant believe how well I'm doing and Im calmer because its so frustrating not be able to hear around people you love or being isolated most of my life because of my hearing impairment. Now I'm around everyone more because I can hear. I cant hear yet with a kitchen table full of people unless im starting right at you but I'm getting there. One of the things I don't like hearing is the VACUUM ITS SO LOUD and annoying. Something I have to get used to LOL. I didn't hear that noise with my hearing aid. Now I realized how much i have been missing out on all these years. I seriously wouldn't change this for the world my implant is becoming part of who i am now. I cant believe it more than a month with my implant. Time flies. I'm very happy with my progress. I love my audiologist office in the city they are awesome there.

I love the sounds outside its so noisy and I also heard the cars passing by (shhh) noise that what it sounded like. Once again I never heard that with my hearing aid. I love listening to my pond outside so I sat outside for a little today just listening to that sound was nice and the wind chimes on the porch.

Truthfully, So much is happening here so I haven't had a moment to use the Sound & Way beyond program I love. Im going to try and fit that in tomorrow.

On Saturday I'm going to the movies WITHOUT CAPTIONS.It will be my first time with my implant, I'm excited. I know it will be weird without captioning on the screen but I want to try it being that I'm doing pretty well. Why not give it a shot it cant hurt right?

Thanks for stopping by!

Mapping #3 April 7, 2011

2011-04-10T17:16:00.002-04:00

On April 7th I had my 3rd mapping. I am doing really really well with my implant. So thankfully I am one of the lucky ones. First my scar is perfectly fine my hair grew back so fast you cant even see it. Im happy about that. So I met with my audi she saids im doing very well. I showed her my results from the SOUND & WAY BEYOND cd rom that came with my kit that is amazing. I practice almost everyday. My audiologist saids that she hasnt seen such amazing results in awhile. I did tell her when I got 80% I was a little upset because I wanted a 100% you know but she did remind me that is amazing how much im hearing and it has only been 1 month! It feels longer no? I am on a new program. She has blocked the sensitivity. I finally understand what the sensitivity level means. I couldn't figure it out it means that when I raise the sensitivity level up the further I will hear. Thats so cool. I did hear someone talking the other day with the doors shut in the other room. She blocked it because I have to focus on the programs. So this new program im comfortable with much louder I can hear myself BETTER and people around me. I am still having a little trouble with conversations. Im getting 98% of what people are saying but if for instance someone is talking the background it just cuts me off guard and i have trouble. My implant is AMAZING and I would never go back to wearing an aid in my Left ear. I cant get over how much noise there is and sounds and I heard the letter " s" for shhhh or " f" Ffffff for fish. Those are the two letters I never was able to hear with my hearing aids. I am on program 1 for 1 week then i have to switch to program 2 if im comfortable I leave it alone. So we are still working on finding out what program is best for me. I love my remote control with my NUC 5.

Yesterday around 9pm all sudden I HEARD " BOOM" my heart was racing turns out it was FIREWORK. That was LOUD! I have heard fireworks before when I had my mod-severe loss but this was LOUD! Pretty neat. I also heard my dog drinking water from her bowl. I couldnt figure it out but now I know and that so cool!

Im hearing new things everyday and I love it. I have amazing support and All my CI buddies you are all amazing. I am doing well the cell phone although I dont really use my Cell that much I prefer text but I heard most of the sounds on the phone.

I go back for my 4th mapping in about 4 weeks. I am comfortable with my Audi. I like her alot shes very educated and she answers all my questions and I dont feel rushed either. So I am glad I'm comfortable with working with her.

Next week should be in the mid 70's so I plan on going to the beach to walk on the broad walk and LISTEN TO THE OCEAN for the first time so I will be back because I heard its amazing and that is ONE of the MANY sounds I never heard before. Im looking forward to this.

Have a good week!! :)

3 Weeks since Activation

2011-03-30T21:44:00.004-04:00

Hi Readers: I wanted to stop by on Tuesday, March 29th, 2011 but I didnt have the time. On Tuesday was 3 weeks since Activation. I am doing very well. My last post I was a little dissapointed but My brain has gotten used to this program. I am still on Program 3 since my last mapping. Program 1 and 2 are just to low. I am comfortable with program 1 altho I am still having a bit trouble with coversations and Im not getting it. So I think it needs to be up louder. I did try program 4 Im not happy with that program either. I am hoping thats this is happening maybe because 3 electrodes are off bc of the shocking pain I had in my face...? I hope! I had to reschedule my 3rd MAPPING im going April 7th. Yesterday I went outside it was a nice out sat on the pourch and I heard my dads pond. Pretty cool never heard that before. I heard the family business trucks which is across the street. I heard a car goin by that was very SQUEAKY noise. Then I heard my moms windchimes so cool sounded like DING DING DING. At first I couldnt get where it was coming from then I looked up and realized that must be it because it was blowing from the wind. I hear music very well and I love my audio cable. I also tried the Telecoil today with my cellphone m4/t4 rated I have the HTC EVO SHIFT TOUCH SCREEN new phone. I love it. I heard very well. It was just a BIT LOW. Altho the vol was high and so was my cell. So I think after my Mapping I will be set.

I cant beleive its 3 weeks. Time flys like CRAZY. So far been an amazing experience and I wouldnt change it for anything. About my Incision is nice and pink its so itchy drives me insane mostly at night I know its still healing. its only been 1 month. Its pink and You cant even see it. My hair grows so fast that I cant even notice anything. PERFECT! So it was worth the pain for 2 days!!!!!!

Here is a quick picture a bit better than the first one.

Have a wonderful night!

Mapping March 21, 2011

2011-03-24T23:46:00.005-04:00

On March 21, 2011. I had to run into the city because my implant was hurting my ear. Everytime there was a sound my hear hurt. It was bazzare for like a few days. I couldnt wait 4 weeks for my 3rd mapping. I went in by myself because mom was having surgery down the block. My audiologist took three ELECTRODES off because those electrodes where giving me the pain. We went through a series of beeps and I had to tell her when it hurt me. That is taken care of. I was hearing in the room I felt comfortable with the settings she made it even louder. She tested me with some words, I got them all correct. BUT.... heres the thing. The moment she walked me into the waiting room area I couldnt understand what she was saying and I felt like it was WAY TOO LOW! I was upset because I couldnt hear what the Secretary was saying to me " we have to make an appointment for your 3rd mapping in 3 weeks." So I didnt understand why I couldnt hear her. Then I couldnt hear the taxi driver. Ohgod now im upset. So In the room is a hudge difference from going outside in a regular setting so Im kind of upset because I was hearing fine. So now I have to wait till April 7th for my 3rd mapping and I guess Ill have her BLAST IT lol. It seems lower than before because I was able to hear conversations etc. Im guessing maybe because 3 electrodes are off. I DONT KNOW I need some opinions please that would be greatly appreciated. I do HEAR THINGS like my niece screaming " D" like I did with my 2nd mapping and I hear the keyboard still and MY OWN VOICE but for some REASON I cant hear other peoples voices its pretty low. I hear it BUT I CANT make out what is being said.

Two days ago I went to a board meeting because Im a member of my local HLAA chapter and this was the 1st MEETING I went to with my implant. There were just 5 of us we sit at a round table. It was HARD. I was getting upset and I was relying on LIPREADING THE ENTIRE TIME. I was exhausted. But then as we leave we didnt realize it was snowing so bad and it was icy tooo the snow just wouldnt stop coming down. As my friend driving all sudden I HEAR " TIC TIC TIC TIC TIC" I asked her WHAT IN THE WORLD IS THAT SOUND? I never heard that before... Happens to be FLEET. It was coming down really hard. PRETTY NEAT! Like I said I heard it and its pretty low so I was happy about that. As Im walking into my driveway to go to back door I hear that SAME NOISE above me coming from my UMBRELLA. I didnt want to get my implant wet so I had an umbrella with me. Same sound. TIC TIC TIC TIC. I was glad i heard the fleet for the 1st time in my life. I never heard that with my hearing aids before. I didnt even know almost everything makes a sound. Its amazing experience.

My next appointment for my 3rd mapping is April 7th. I can hear my voice right now but I cant hear peoples voices weird I did before. So I alot of things to mentain to her so I have to keep track of all this. I know it will be fixed I was just a little dissapointed.

So for all MY CI FRIENDS I need your advice.... I dont wantt to have to keep going back and forth to the city just to tune it up every 2 weeks! A friend of mine recomended & told me that SHE HAS THE SAME PROBLEM AS ME. So Im glad im not alone. What she does is she goes into the LOBBY or waiting area during the mapping to see if its LOUD enough then goes back to the audiologist room. Is there any other Suggestions for me??? It would be greatly appreciated. I am going to try this for my next mapping I just hope they dont think im CRAZY! LOL.

I also hear my new printer its so LOUD! It makes all these weird wiring noises something like " cha cha cha."

Also-- she didnt want to change programs on my remote. WELL shes going to kill me because Im on program 3 instead of 1 she wanted me to stay 1 week on progam 1 etc, 1 week on program 2 etc... Its to LOW EVEN on 3. So im suppose to do this because we are trying to figure out WHAT PROGRAM IS BEST FOR ME this way we just stick with that one program. But im postive Im patience well this week I havent been lol. But I know April will be here soon. I just feel like its LOWER than my 2nd mapping which makes no sense even though it isnt its LOUDER. & I keep saying Its only the begining.

Thanks for listening!

From Silence to Sound Documentary

2011-03-18T13:05:00.003-04:00

There is new DVD called " From Silence to Sound" how a deaf man takes a chance on a risky surgery to get a Cochlear Implant to hear. This is a nice documentary about his life. Watch the video its captioned.

From Silence to Sound

To Purchase this DVD: Click Here

Yesterday's 2nd Mapping Results

2011-03-16T16:13:00.004-04:00

Yesterday my friend & I went into the city for my 2nd mapping. I am doing very well and I told my audiologist what I have been hearing since day 2 with my implant and she was really happy for me. Then I told her that I want her to make it loud because I hear conversations but its so low to figure out what people are saying. Although I did hear one syllable words ( cat, bat fail ) on that program. It was low so she adjusted it. Its where I want it to be. So I am conmfortable at first when I left it was just too loud Im assuming because its just NYC and its loud and its never quiet. When I got home it was comfortable so I will leave it on this program. Im loving the control that comes with the Nucelus 5 this way I dont have to take off my implant and can just touch a button to either low it or put it louder so i love this option. Its conveient. The great news is that she put in the testing booth after she did my mapping and I did very well she told me to repeat a few words: " SAY THE WORD AIRPLANE, SAY THE WORD HOT DOG, SAT THE WORD POPCORN". I was so confident and I was so happy I heard almost all of her words. She said I did terrific! I couldnt believe it I wanted to do just jump up and down lol.

My 1st audiogram with my cochlear Implant on I hear 10db!!!!! How cool is that? Here is a picture of the audiogram. I couldnt believe it I left the office with a big smile on my face.

Then after we left the meeting I went to an HLAA meeting which I always enjoy going to because I learn so much from the meetings and I love meeting new people who have hearing loss just like me. We know how to communicate with eachother and they are just friendly people. The meeting was about WALK4HEARING which they showed a video. I liked the video because it explains the purpose of HLAA ( Hearing Loss Association of America) and the point of the WALK4HEARING and what they do with the money that is donated. This was my first meeting with my cochlear implant it was interesting. It took me a litle while to figure out the Telecoil switch. A telecoil switch for those of you that dont know is a switch you can touch on your implant and you will AUTOMATICALLY hear the person talking in your ears! I love it! They are on the latest hearing aids as well. I was able to hear somewhat of what the speaker was saying. Everyone was so happy for me and glad I was doing well. I also got to meet a new friend of mine that is in charge of all the state newsletters as well as my newsletter that I make every month for my local chapter. She is a great person and I was delighted to meet her!

I forgot to mentain that I will be going back in a month for my 3rd mapping and at that mapping my audiologist said she is going to turn on the TELEPHONE switch and some other programs! So excited! I am loving my audio cable that lets me listen to music.

Cant believe its almost 2 weeks with my Cochlear Implant!

-Danielle

2ND Mapping tomorrow

2011-03-14T23:05:00.002-04:00

Tomorrow is my 2nd mapping and a week that I had my cochlear implant. I cant live without this implant. Its amazing & seriously I wouldn't change it for anything. The results already are incredible. I am very happy! Today I had a CI moment I wanted to share with you. For about 10 min I Heard DING DING DING and it kept going and going and I looked everywhere in my room, I had no clue what it could be then I thought maybe its my sister in the kitchen because she was cleaning. So I went downstairs because im on the 2nd level and nothing no cleaning my sister was sitting down. I said what is that NOISE? She saids its DADDY outside. So I look out the window from the kitchen and I see my father cutting wood. I couldn't believe I Heard this sound all the way in my room with all the windows shut. I was amazed. When I had my hearing aid on I never heard out the window before even when I had my mod-severe loss.

Tomorrow when I see my audiologist I'm going to ask her to turn up the volume a little bit louder Its low. I hear people talking I hear words clearer now but I need it a little bit louder. I cant make out what your saying without reading your lips just yet. I am also going to show her my progress with this program I received with my kit. I am sure shell be happy because my results I cant believe I scored 92% pretty awesome. Been practicing everyday so this helps as well.

My incision looks good nice and pink and now its starting to peel a little. I see my surgeon for the 1st time with my implant next week. Everything is going very well and I'm taken it day by day.

Tomorrow night I have an HLAA meeting I am looking forward to meeting a new friend and showing off my CI this will be my first meeting with my implant. I'll let you know how it goes.

Goodnight All!

Day 1 & 2 with my Implant

2011-03-10T18:37:00.007-05:00

On March 9th, 2011 when woke up I was so happy couldn't wait to put on my implant. All sudden I started to hear sounds on program 4 n the map is on pretty low. Didnt realize how low it was until I wore it today. My implant is amazing. I have heard so many sounds yesterday. Here is the list:

1- my voice for the fist time ( I sound like a robot right now) BUT today March 10th it is a little clearer. My Niece calling my name " D" is priceless!

2- the wind

3- the keyboard and my mouse

4- texting someone on my cell phone

5-water running

6- When I was on the phone with my Left ear ( good ear) I heard some of what the recording said in my R ear! I couldnt believe it it was all mumbled though the robot sounds. AMAZING. I dont even know if thats normal!

7- I can hear one syllable words ex: Cat, Bat , Mat , Car etc.

8- the door shutting.

9- the TV I was watching Nick Jr with my niece and I heard the puppets but I didnt know what they were saying.

10- my brother in law chewing his food my mom saids its very very loud and I didnt realize what that sound was!

11- My mom played my nieces toy piano that was in the den while i was in the kitchen.At first I thought it was the back door but it wasnt.

AND so much more the list can go on forever...

Yesterday I practiced alot mostly all day with my 1 year old niece. It sure did help! I was exhausted but I was amazed at what I was hearing already.

Today March 10th, 2011 I woke up and practiced with this program I received in my kit. I love it. I practiced one syllable words and Pure tones and Voice recognition figuring out if it was male/female voices.

My results for the Pure tones I scored 92%.

Environmental sounds I scored 80% I got a few wrong what I got wrong WIND BLOWING OR CRICKET. It was a cricket sound not the wind. I never heard a cricket before. I was confused so I just guess on that one. I still did pretty good.

Then The Vowel Recognition results was 84% and the confused pairs that either a male or female was saying was Leap-Lope, Jack-Jock, Could-Ked, Yawn-yed. I was having a little trouble with those but remember its on very low.

Overall, I am very positive. It has been an amazing 2 days for me. I am very happy with my progress today is much CLEARER & I'm picking up alot more sounds.

I wanted to share this will you all. I know many of you were waiting for details. I cant believe all these amazing sounds I'm hearing & its only Day 2. I found out that I have a few hair cells left & my auditory memory helps!

Here is a picture of me with my Cochlear Implant on. I have to wear whats called a HOOK I think thats what its called the terms are still new to me. The hook keeps the implant on my ear because my ears are very tiny the implant fell off during activation. I love it and I forget its even on my head.

( Please Do Not Take Pictures without asking for approval.) Thanks!

So next week I'm going to ask my Audi to turn it up higher.

I should be back tomorrow.

Goodnight!

-Danielle

March 8th, 2011 Activation Day!

2011-03-09T22:22:00.002-05:00

Yesterday was Activation day for me. I was so nervous I only slept 3 hours and woke up at 7:45am I just couldn't sleep. At 10am I left the house and then it just starting to kick in from there.My friend & I arrived in NYC about 11:45 which was really early but I rather be early than late especially I have to learn how to get here and there are so many different ways. So finally 1:30 comes and I was walking towards the building and I just took a deep breath. 2pm came I'm still sitting in the waiting room 2:10pm finally comes and my audiologist comes to gets me. Then I started shaking LOL! I was thinking what it would be like to hear my niece and things I couldn't hear before even with my hearing aids. The appointment was 2 hours. Finally the processor comes out and I love love the color glad I choose my hair color ( BROWN). Its perfect! My audiologist explained the pieces of my processor the Coil, magnet etc. I sware I never learned so much in such a short amount of time it was overwhelming. Finally the processor goes on my head I didnt feel the magnet at all. Then ALL SUDDEN I hear this tiny beep. I NEVER HEARD LOW BEEPS IN MY LIFE! IT WAS AMAZING. Most of the time I was straining but I HEARD IT!! I DIDNT CARE. I heard the loud ones too. When you talk it sounds like ROBOT and when it first came on it was alot she had to turn it down. She put it all the way on but then I started getting a headache ( OF ALL TIMES) I think because my brain wasnt used to all that noise. Its MUFFLED but she said it was normal. I was having trouble sometimes with the beeps because I didnt know if it my TINNITUS or not my TINNTUS has been the worst since surgery & very LOUD. So we went over my kit we kept the processor on low and the control on volume 10 it goes up to. I love this control because i dont have to take off my processor to switch a program! I can just touch a button & that it. Its very light I dont even feel it.

I have videos but unfortunately It wont let me post them so your going to have to wait till next week for a short 5 minute video. Being that the video is 1 hour I was having problems uploading! :( But I promise next week I will have a video. I will be taking a picture that I will post in a few days!

It was an amazing Activation and like I said I couldnt believe I was hearing that low. She kept it on low due to my HEADACHES ergh. I go back on March 15th Im going to ask her to turn it up.

-Danielle

Activation Day is almost Here!

2011-03-05T22:19:00.004-05:00

Its Saturday night everyone keeps asking me " ARE YOU EXCITED" " WHEN'S ACTIVATION." I seriously feel like i been saying the answer for years yet its only 4 weeks. I cannot believe only 2 more days till ACTIVATION DAY on TUESDAY MARCH 8TH, 2011!!!!! Thank you all for the amazing support it really means alot to me. It hasn't hit me yet I am excited but the actual day hasn't come and that's when I'm going to get nervous! Im leaving about 11 appointment is 2pm. Its a 2 hour appointment so its going to be a long day for me! My incision is look really good its pink and the top hasn't peeled off yet which is driving me nuts because I have OCD issues lol. It has healed very nicely and you can barely see it. The tinnitus is AWFUL. Surgeon is on vacation so I dont have anymore XANEX and apparently the on call Dr. doesnt want to call me back altho I called 4 x I gave up so Im suffering with barely any sleep. My surgeon is awesome! I lucked out I am glad I picked him after all! A big thanks to one of my HLAA meetings he came to one of them and spoke about Implants about 3 years ago. This was way before I even went deaf in this ear but I remembered him from the meeting!

I hope you are all doing well. All of your journeys I have been reading daily and Its a big inspiration to me and I seriously never in my life did I learn so much in such a short amount of time. Cochlear Community is just amazing and Im glad that there is a support group out there!

PS-- I CANT WAIT TO HEAR! Ahhhh! Its so exciting. All the " WHATS IF'S" are in my head. I must say though.. I do LOVE the option that I can be IN SILENCE WHEN I WANT TO :) Sometimes I do need it so its nice to have BOTH WORLDS.

Eventually I would love love love to become a Cochlear Volunteer! That is one of my goals for the future once everything falls into place.

Have a great weekend!

I promise I will be back March 8th, 2011 the day of ACTIVATION! I will posting pictures as well.

-Danielle

Fire Safety for people with Hearing Loss at a HLAA meeting

2011-02-16T15:57:00.004-05:00

Yesterday on Feburary 15, 2011 I went into the city with my friend to learn about " Fire Safety for people with hearing loss." It is actually my first Fire Safety class and I have learned alot last night. It was a very informative meeting and I really enjoyed it. Everyone was so happy I was there & was so happy I have the implant. Many people wanted to see my Scar so I showed them. So this meeting we learned alot about SAFETY and what to do before a FIRE and much more how to prevent a fire from happening etc. We also recieved a free Lifetone Fire Alarm from the Fire Dept as well as a Smoke Alarm! This meeting was packed filled with people with hearing loss that either wear hearing aids or cochlear implants. Today I am going to be putting up my smoke alarm and activating the new Fire Alarm lifetone alarm. The strobe can go either under your pillow or under the bed and it will shake the bed to alert you there is a FIRE. This alarm clock is pretty expensive retail is about $200.00 and this will last us about 10 years. Remember every month you must check your Smoke Alarm to make sure it working condition. My dad is a fireman and we do have smoke alarms in my house. I also have a Strobe light in my ROOM I believe for the doorbell only but it doesnt work. I am going to have it fixed. Its new and its never been used its just sitting on my wall. Last night when I came home around 10pm after realizing my " HUMAN ERROR" as the fire dept called it yesterday with extension cords in the walls or outlets lmao well i unplugged about 25 outlets lol and didnt realize it was a fire hazard... Dad would of killed me if he knew but thankfully he doesnt come up here so he never knew haha. So now I feel a little bit better that everything is UNPLUGGED! Although Lately for the past 1 year or so I have been scared and toss and turn because I cannot hear at night. Its frightening to me see I never heard wellw ith my ears but now that im in COMPLETE SILENCE pure SILENCE it is a bit scary for me. So i think once this new lifetone clock is in I will be okay.

& TODAY HAPPENS TO BE 2 WEEKS SINCE MY CI SURGERY!!! :) I am doing well. I am fine. I can do things now. It was just a little awful reaction first few days lol. I still cant bend because I get dizzy (normal) and lift for another 3 weeks. Other than that I am back to my daily lifestyle. I am in NO PAIN and it so happens yesterday I realized I dont feel it anymore. It feels like the implant is not even there. PHEW! & I cant sleep on it yet dr said i can but no Im not a fan of that yet. I have been sleeping alot also! Which helped.

Hope you all have a great day today is Sunny snow is slowing dissapearing and I cannot wait for SPRING! Its been a horrible WINTER here in NY and I never seen so much snow in my life. How many more days till SPRING????? oh i cant wait.

In July is even more exciting my first trip to DISNEY WORLD! This is going to be an exciting summer!

Smile-Hugs
Danielle

The Lion King on Broadway

2011-02-16T15:45:00.003-05:00

On Sunday Feburary 13, 2011, I saw my FIRST broadway show ever " The lion king." This show was Interpreted for those that are deaf and know ASL. The show was AMAZING! My bestfriend and I went to see the show. We waited about 8 months to see this! It was worth the wait. I was so excited and was so glad we went. We were 5 rows in the orchestrea area and the 3 interpreters were just awesome! After the show we were able to meet with the cast and ask questions. Many people asked questions to the chidren who were in the play " if they go to school and how they do the show if they are in school". The kids Zimba- who played the boy explained that he leaves school at 1:30pm and then comes to the city to do the shows. The girl who played Naila- also said she leaves school early to come to preform. Both kids were young about maybe 10 years ago I would say. Then finally more and more people from the cast came out after they changed there clothing asked questions. It was a great show! I tried to take a picture and I got caught ( HEY U LIVE U ONCE) LOL. The security guard comes over and flashes the bright flashlight in my eyes okay its okay if the other side takes pictures i saw cameras flashes. NO LUCK FOR ME! lol. So I tried and it didnt happen. This was the best show I have ever seen. I finally can say I went to a broadway show! YAYYY. Here is a video from youtube its a commerical for the lion king show.

IT IS NOT CAPTIONED! IM SORRY. For me to caption this is impossible.

Smile-Hugs
-Danielle

Hearing With Your Nose? Nasal Stem Cells May Treat Hearing Loss

2011-02-14T13:31:00.003-05:00

Check out this article:

Hearing with your nose?

What is your opinion about this article??????

How Hearing & Cochlear Implants Work

2011-02-12T13:27:00.003-05:00

Some of you asked me on Facebook " How can you hear with a Cochlear Implant". Here is a video that will help you understand how I will be able to hear with my Cochlear Implant. I am counting down the days till ACTIVATION. I cant wait.

Smile-Danielle

Checkup & Activation Day

2011-02-08T17:10:00.002-05:00

I cant believe tommorow will be 1 week since surgery. Time sure does go by fast! Today I went into the city for a checkup. Surgeon said my incinsion looks good. I asked a few questions that I had concerns about. Everything is good. I can no longer get MRIS I have 2 ID CARDS I have to carry around with me at all times stating that I have a CI. I also have MRI/AIRPORT card. In July it will be my first TRIP to DISNEY WORLD and my first trip on an airplane with a CI. I am feeling good. MUCH MUCH BETTER. So I put that behind me and now I am very excited for ACTIVATION DAY! I wanted to say that everyone is different after surgery my friends were able to go to stores right after surgery however in my case I had it a little rough. I have a high tolerance of pain because I havent been well for almost 4 years so I can tolerate it. All the pain is gone and now I am just SORE and thats normal still a little stiff but I will be fine. I am still dizzy a little well it comes and it goes. I cannot BEND OR LIFT for 4 weeks surgeon saids because it will pull the incision. I am sleeping much better as well. As far as the Tinnitus ( ringing in the ears) it is normal and most likely it will go away its pretty worst than what it was before surgery but its okay he gave me XANEX he said to take it if it gets really bad it RELIVES the pain. COOL never knew that after all these years with TININTUS.

I recieved an email a little while ago about my ACTIVATION DAY! My activation day is March 8th and followup mapping is March 11th, 2011!!!!! YAYYY Before you know it will be here and I cant wait to share my journey with you all.

Have a great night and I will be back on Sunday. Sunday I am going to my FIRST Broadway Show " Lion King" in ASL. This should be fun. I am excited. Front Row to and 10 minutes after the show my friend and I get to meet the cast and there will be an interpreter there as well. Pretty neat! I will be back to tell you my experience.

Smile-Hugs!
Danielle

Through Your Child's Eyes: American Sign Language

2011-02-08T17:07:00.003-05:00

To all parents out there that have children with hearing loss please watch this: ITS CAPTIONED!

Smile-Hugs - Danielle