Tuesday, June 21, 2011

HLAA Convention 2011 Experience

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!

Saturday, June 11, 2011

Evaluation Letter

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

Friday, June 10, 2011

Healthy Body Healthy Mind

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

Wednesday, June 8, 2011

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

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?

Tuesday, June 7, 2011

My first 3 month Cochlear Implant Evaluation

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

Wednesday, June 1, 2011

History of Pediatric Cochlear Implantation

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?

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 :)