FutureBionicEar Mom

This is Day 4 with the new implant

2010-03-21T09:48:00.000-07:00

This is the fourth day for the new implant. It a big diffence with the left ear. Everything sound higher pitch and sharper but still have problem with music, it sounded like rapsy sound, like Darth Vader's breathing and also noticed that when men speak, their voice sound rapsy.

My audie gave me three programs to work with for a week. Right now I am on program 2 which is louder, the first slot is softer. And also must wear the new implant at least 2 hrs a day alone. So tomorrow hopefully I will use the The Listening Room that is provided by HearingJourney.com.

Next Thursday I will be going back to Johns Hopkins for the second mapping. More things will be happening. I will update after the Thur appt.

I have to say WOW on my second implant!

2010-03-19T15:30:00.000-07:00

I got activated yesterday for my second implant. My ears are not identical, they are fateral twins. The new implant sound higher pitch and sharper. I understood speech right away, the reason why is because of my hearing aid since the age of 3. This new implant will be the dominate ear and the right ear will be the backup.

We did put the t-coil on the right one for now. My audie did not map the right ear because she does not want to overload the brain. It will be map later. She has given me three program to work on and also wear it for at least 2 hrs alone a day. Which I did and no problem, hopefully I will hear more later like the microwave beep, any thing that is high pitch. I do hear the turn signal in the van and also was listening to the radio and understood some of the stuff which was the weather report but the van has to stop in order for me to listen.

I am glad that I went for the second implant, no regret! I know there is more coming. So I need to buckle in and engage the new improve hearing world which is noisy.

I go back next Thurs for the second mapping. More will be follow.

2nd Implant and Recovery

2010-02-23T13:57:00.000-08:00

It has been a long time since I lasted blog. I had my surgery for the 2nd implant on the left last Wednesday, Feb 17. Dr. Niparko did a wonderful job and the surgery went easier than the first time around. I did not have any vertigo, numbness, loss of taste and or metallic taste. I was in recovering a little longer because they could not get my blood oxygen up so my dh had to make me mad in order to breathe more. Since it has been less than a week since surgery, I had to listen all over again with my right ear and I noticed that I should have a mapping before the surgery. I realized that the last mapping was in July so things has change especially the volume.

Today I had to use the phone to talk one of the nurse from the insurance company and I explained to her that I am using the Captel to be able to understand her. The conversation last about 5 minutes and I got most of the words so it getting there. My right ear is not accustomed to the phone, it was my left ear.

My first activation will be on March 18, 2010, the day after my daughter's birthday. I am glad that I got this second implant.

Merry Christmas and Happy New Year!

2009-12-15T03:17:00.000-08:00

We are coming to the end of 2009 and it was a tough year for some people. I am grateful that I had the implant this past year. I will be getting my second implant on Feb 17, 2010 with Dr. Niparko. My left ear is my favorite ear and I will be losing my residual hearing which I do not have much left. Hopefully it will be a good 2010 for me and everyone else.

I do not have the activation date yet. Will get it probably before the surgery and also I will have mapping before the surgery for the right ear.

Merry Christmas to you all and a Happy New Year.

Another Mapping this week

2009-07-20T05:34:00.001-07:00

I will be going in on Thursday for another mapping. I got this appt alittle early because I noticed things has changed and could not wait until Aug 7. Also I will be making an appt to see Dr. Niparko for the second implant for next year after the holidays. I missed hearing out of my left ear.

I noticed the other day that I was asking my son a question with my back to him and he answered my question without me turning to face him. I understood what he said. So there is progress on this. I am also listening to audio book and I really have to listen where I am and that helps.

Will let you guys know how the mapping goes on Thursday.

Third Mapping Update

2009-06-04T08:22:00.000-07:00

Hi Folk!

Got my third mapping this past Tue. I went into the booth for testing and I am hearing things better than the last time, but still can not understand the speech in the booth. The audie said it too early for that. They added more sound, high frequency. Boy yesterday was really loud and my brain is really overload with sound. I hear the birds in the backyard and it was much louder and clear. And this morning I was defrosting the roast for dinner tonight in the microwave and I was walking into the kitchen wondering what is that noise and come to find out it was the microwave and I heard it beeping much louder while I was in the other room.

So things are starting to pick up. Hopefully I can start using the phone with practice but I know when people say wait it too early. But it would not hurt to continue to listen.

We are heading for Nashville, TN for the HLAA convention. It will be our first one and we are excited about going. This would also be good for my daughter who is also hearing impaired. We could use some resources for her. Will tell you about the convention after we back.

Have a wonderful summer!

10th Annual Johns Hopkins C.I. Picnic

2009-05-18T07:05:00.000-07:00

Tina, Beth MacDonald, JoAnne, and Hope (hearing dog)

The Listening Center at Johns Hopkins Hosp. had their 10th annual C.I. picnic so we decided to go because it would be great to meet other people that has their C.I. Especially Elizabeth MacDonald from the BEA (Advanced Bionics). There was more elderly and younger kids with CI. I met alot of people and saw some from their blogs. It was really nice, too bad that they do not live in the area where I am at.

Update on my progress with the CI. I am still learning to hear the words without looking at the book or the person but it hard. The radio I am starting to catch the words. I am still having trouble understanding my kids but that will come when my brain is ready. I will have my next mapping on June 2.

This is me and my husband Tom

This is me and Joanne and her hearing dog Hope

Me and my audie Courtney Carver

This is my daughter Shannon

The Listening Center at Johns Hopkins Hosp. had their 10th annual C.I. picnic so we decided to go because it would be great to meet other people that has their C.I. Especially Elizabeth MacDonald from the BEA (Advanced Bionics). There was more elderly and younger kids with CI. I met alot of people and saw some from their blogs. It was really nice, too bad that they do not live in the area where I am at.

Update on my progress with the CI. I am still learning to hear the words without looking at the book or the person but it hard. The radio I am starting to catch the words. I am still having trouble understanding my kids but that will come when my brain is ready. I will have my next mapping on June 2.

2nd Day Since the Activation

2009-05-08T06:34:00.000-07:00

I am already on P3 and I can tell that I need more power because I am used to hearing things and beginning to understand more stuff including people talking in the fast food restaurant, catching a few words here and there. I am also hearing alot of shshshshsh sounds. The other day I was outside with my husband and I keep hearing this hammer sound and I asked my husband what is that noise and he had to listen also and said the neighbor was using the pressure washer to wash the bus. I was hearing the clicking sound. Wow!! I can hear people talking but not catch what they are saying so I have stop and listen. I need to do the Listening skill but have to do it when it quiet and did try to read the children book and it was not easy, but was able to follow along. Some sounds are loud because of the setting I had in the past had to be turned down like my phone on my desk. It scared me after my first mapping and I literally jumped so I had to turned down the volume of the ringer.
When I try to turn up the volume on P3 it gets echo sound so I had to turn it back down. Something I heard today that I never heard before. We were at my daughter's ENT appt for the follow up and the doctor had to check her middle ear to see if there is any fluid and the device he used made a noise and I asked him is that device making a noise and he said yes. I told him that I never heard it before. He is really amazed how well I hear even though I am not wearing my ha in my left ear. After a week I tried my ha in the left ear and I do not like it. I had a hard time listening, but I had to use my ha for an emergency when I answered the phone when my husband is out of town. My kids does not answer the phone, never does.
Will let everyone know about the 2nd mapping. I am wondering what they are going to do.

Here is my first test in the booth before the 2nd mapping. I can not explain it but it showed that I needed more volume in the high freg.

1st Activation on March 21, 2009

2009-05-08T06:31:00.001-07:00

What can I say "WOW"! I can understand speech and environmental sounds. I am now on the second program. I was on the first one since yesterday and just moved to the second program. Things are sharper. At least my eyes are not dancing so it tells me that the brain is accepting the sound. I just listening to the voice mail and understood it including to find out it was my mother who called.
The world is loud. Never thought it would be that loud. My son said to me "Welcome to my world." I still have a hard time understanding my kids because they are high pitch. Can not hear the microwave beep yet.
I probably will move to the third program later today. Also yesterday they almost postpone my appt because the audie was out because her daughter was sick and they left the message on my cell and also called my husband and they asked him if they could postpone it and he said no, she waited long enough to get activatied.
I am using my 4 P's Patience, Peristence, Practice and Prayers. I am learning to hear. And it awesome!!!! and it will get better as long as I have my patience. The only problem I have is that it cut off on loud sound like someone high pitch voice and the t-mic turned. I have the 50/50 t-mic for now.
Go back to the 2nd mapping tomorrow.

Update: Doing well

2009-03-30T16:53:00.000-07:00

It will be 3 weeks since my surgery. The incision is healing very well. I still have some vertigo problem but not as bad. I have my feeling back on my tongue and not the head. I missed hearing out of that ear. Sometime I hear things but I assumed it the phantom playing around. I have three more weeks before the activation date.

Funny when people asked me how well do I hear and I tell them that I not turned on yet. I have to wait at least 6 weeks before the activation. I explained to them that once I get turned on I will be hearing sound like Darth Vader, Mickey Mouse or someone was inhaling the helium from the ballon. And then I have to take the other hearing aid out of my left ear for three months so my brain can be retrain to hear. It will be hard but it takes patience to do this. I wish I have patience with my youngest daughter who is also hard of hearing. She misplaced her hearing aid so we have to replace it and the other aid is ready so hopefully both aids will be working by next week. She is having a hard time.

Will let you know how the activation goes and I will tape it so you see the result.

Pictures of CI Implant

2009-03-14T06:44:00.000-07:00

Here are two pictures of my ci implant

As you can see, the surgeon did a wonderful job on my ear. They did shave my hair off so hopefully it will grow back quickly.

C.I. Surgery

2009-03-13T05:47:00.000-07:00

Hi All!

Finally got my CI surgery this past Tuesday. Talking about balance issue, my balance was way off. My eyes want to become a revolving door. But it getting better each day.

I have a picture what I look like the day after surgery. I am still having problem with the left eye which we do not know why. It was some kind of allergric reaction to the drop for the dry eyes and it not from the surgery.

The incision looks great, I have one of those dissolvable type of stitches. I had to wait 48 hrs to take the turbane off which it was yesterday. I will be taking my first shower since Tue. Can not wait to wash my hair. And speaking of my hair, it was shaved off alot.

Will keep everyone update.

More Good News!

2009-02-19T06:27:00.001-08:00

I received a letter from Johns Hopkins yesterday about the approval of the surgery next month.
I am kind of surprise how the surgery and other stuffs cost. I am also afraid to ask how much the processer and accessories will cost.

Got the Activation dates

2009-02-18T09:41:00.000-08:00

Here are the activation dates!

April 21, 2009-First activation
April 23, 2009-Second activation
April 30, 2009-Third activation
June 2, 2009- One month follow-up

Will it getting closer to the reality of having CI in my head. I have alot to do before the surgery and I am not moving very fast with it. So I better get going so things can be in place.

Pre-op Appt Today

2009-02-14T08:35:00.000-08:00

I had my pre-op appt today for the surgery that is schedule in March. Everything is great and there is not problem at all. All I have to do now is do the blood work. It getting closer!

Finally got the surgery date

2009-01-22T07:39:00.000-08:00

I got a call yesterday for the surgery with Dr. Niparko on March 10, 2009. That day will come before you know it. It getting really exciting since I will not be wearing my hearing aid in that ear for a long time.

Hearing Test Done!!! Surgery is next

2009-01-16T16:41:00.000-08:00

The hearing test went well and it only lasted about 45 minutes. All I had to do was listen with the aid on the R and turn the L aid off. Listen to the beep and after that repeat the sentences. It was bad, it sounded like the person was speaking foreign language, could not understand it. Here is the funny part after the R one was done, I realized that the hearing aid on the right was off instead of on so we had to do over again.
Then we switched to the L and did good, didn't do well on the sentence or the words. I thought I had to repeat the word ready and then word. The computer wanted to warn me for the next word.
After the test, we went the equipment and she asked me which product I want and the color. I told her AB and beige. I decided to go ahead with beige because my hair will cover it. The surgery will has not been set yet will know later. It might be in March not Feb. If they have cancellation they will let me know.

Getting Nervous about the hearing test on Friday

2009-01-12T06:14:00.001-08:00

I had hearing test so many times and now I am hearing that you should not guess what they are saying. Half of time I hear them but do not understand what they are saying and I ended guessing what the word are and sometimes I do not say anything. Now what should I do guess or not say anything.

I noticed lately that people saying they are candidate for CI but then turn around after the hearing test and saying you are not a candidate for CI because you can hear with the hearing aid.
For me I can not hear anything without my aids, I have the most powerful aids for now and cannot upgrade because there is nothing out there for now. I am beginning to get nervous now about passing the hearing test instead of failing the test. If I remember correctly the last hearing test it said that I only hear 12% at 60db aided and 0% at 95db without the aids.

Should I be concern or what? And also I have psychological evaluation on Wed and the questions they have is really stupid so I answered the best of my knowledge.

Changed of Plan

2009-01-08T03:29:00.000-08:00

Hi Everyone!

The beginning of the New Year really had a bang with it. My daughter and my father got really sick with a virus and there was not much you can do and let the virus runs it course. I was suppose to have my Psychological evaluation this past Tue and I had to cancel it because of the sick child and the ice storm in the Baltimore area. So I was able to reschedule my appt for next week on the 14th of Jan and also was able to keep the appt. on the 16th of Jan for the hearing test.

I will hit some bumps along down the road while trying to get the C.I. but it takes patience and hard work to get where I want to be.

Will update next week how the appts went.

Merry Christmas and Happy New Year!

2008-12-27T16:34:00.000-08:00

Hope everyone had a nice Christmas, I know for sure that we did at our house and my mother-in-law's house. We always get together on Christmas Eve with my husband's relatives.

Before the new year, my husband is traveling to India back to MJC where he does some computer work for them.

I will have my two appts next month then I will find out when my surgery will be in Feb.

The verdict is in!!

2008-11-25T03:28:00.000-08:00

I had my appt yesterday at John Hopkins and saw Dr. Niparko, very nice man. The verdict is that I am a candidate for C.I. so I will have my surgery in Feb 2009. I still have some more test to do before the surgery.

My husband is really excited about this journey. He also said that I would be a good representative for the AB because what I am going through. We do not have a support group here on the Eastern Shore mostly of them are located on the Western Shore which is Baltimore/D.C. area. I might think about starting a support group here but have to figure how to do it.

You all have a nice Thanksgiving and count your blessing.

Finally got an appt with JHH

2008-11-07T05:43:00.000-08:00

I will be seeing them on Nov 24th for the consulation and also see the surgeon. It will be a long day at JHH. It getting closer to the reality if I get the CI. The question is will the insurance pay for all of it. I am afraid to ask how much.

Very Slow Process with John Hopkins

2008-10-17T13:45:00.000-07:00

Hi,

Sorry about not posting sooner. I still have not heard anything from John Hopkins yet. Someone told me that they move very very slow. So that mean I need to be patient and wait. My cat scan was good and finally found out what the cause of my hearing loss.

Will keep update when I hear from them.

CT Scan done!

2008-10-01T09:54:00.000-07:00

Hi,

I got my ct scan done this past Monday now I have to wait to hear from John Hopkins for an consultation appt. Hopefully this appt won't be long to wait. Usually the appt is schedule in a month or two.

I just finished clowning at the hospital where I volunteer during the week. I am nurse Tenderheart. I clown around with the other two clowns. We walked around the hospital to make people feel happy not sad especially what going on in this world. It makes feel happy to see the person's smile on their face.

I will let everyone know when the appt will be.

CT scan schedule for Mon 9/29

2008-09-23T14:53:00.000-07:00

Hi Everyone,

Here is an update from my ENT appt last week. I will be getting a ct scan done next Monday and then when the office receive the report, they will fax the audiogram and the ct scan report to them. All I need to do is to finish my part to fill out the forms and then hopefully we will find out if I am a candidate for the implant.

Hearing Test Result

2008-09-17T03:33:00.000-07:00

Hi!

Well the test was ok, apparently my hearing has gotten worse. I have 0% speech discrimination with the aids and 12% speech discrimination with the aids. My mother said that does not sound right. I told her that I recognize your voice for most of my life so I can understand you. I can hear people but do not catch what they are saying at the first time and also when their mouth is covered forget it. I lipread very well, she started saying the words and I told her that I lipread so she covered her mouth.

My audiologist will contact John Hopkins to see what other test that needs to be done. Hopefully we will send in the paperwork soon.

Hearing Test Today

2008-09-16T03:43:00.000-07:00

Good Morning everyone! I am getting my hearing test done today finally after one month wait on the appt. After the test then I will my ENT doctor to look at my ears. And probably will ask about getting the CAT scan or MRI for the inner ear and also the balance situation (vertigo). I am anixous to see what the result would be.