Testing: 1, 2, 3....

From the University of Maryland School of Medicine website

This picture is similar to the hearing testing room I was in, except that to me, the rooms were very dim..

Well, I had my one-year mapping last Friday, Oct. 30. Actually, it was postponed two months because my audiologist was on maternity leave. So now all my appointments will be two months behind. For the not-so-cochlear-implant (CI)-savvy, a mapping is basically an adjustment to the programming of a CI. What we, the CI useres, hear changes-sounds may become too soft so the maxed volume of 9 on a Cochlear Freedom can be adjusted to a normal volume at 6 and I can increase or decrease the volume when I need to. There are also certain sounds that are too sharp or too soft and the trained audiologist can set the programming so that sound and speech is comfortable to me, the CI user.

Tests Galore

I was put into a sound-proof area. It’s very dim in there and I had to sit in a chair facing a large speaker. The room is larger than most sound-proof areas. There was a big window where I could barely see the audiologist in the other room.

I was given a series of tests to see if my hearing remained stable or improved. Since I am bimodular (wearing one CI in one ear and one hearing aid-HA- in the other ear), I was told to take out my HA. The first hearing test was to see where my range of hearing was with certain tones. I believe they remained in the 20 decibel range. Then I was given various word and sentence recognition tests.

I’ve always hated the one-word tests the most. There were no other words to support what I heard. Is it duck or buck? Is it worm or warm? I did the best I could with those and when the recorded male voice (in optimum circumstances-no interference). The recorded voice said the word “ready” before each word I had to repeat. It went like this: Ready….duck….ready…wall…ready…bark. and so on. There was a pause between each “ready” so I could repeat the word I thought I heard.

Then I had the sentence tests. I was warned that some of them didn’t make sense or was too vague. Every time I listened to a sentence, I repeated what I thought the sentence was. I would get sentences like these: Mother shut the window. They watched the train go by. The mailman shut the gate.

I had two kinds of HINT (hearing in noise tests). One was staticky and the other was like listening in a crowded restaurant or bar or something like that-with a lot of conversations going on at the same time. I had tricky, vague sentences or ones that didn’t make sense, such as: They discussed the frog. She made the bed with cream cheese. She considered the (insert word). That test, I only had to repeat the last word of the sentence. Most of the time, I’d hear the rest of the sentence and then…huh?...what’s that word? They considered the what? I didn’t have anything to help me predict the sentence. That was the plan, of course.:)

Some of the tests, I was told to put my HA back in my other ear to see how much I could hear with both the CI and the HA.

After the tests were done, she said I pretty much remained stable with little improvement from the previous appointment in May. Most of my test scores were in the 90% range.

The single word tests? It was 60%. A big jump from my pre-CI test. I scored 0% in the pre-implanted ear and in my HA ear it was 32%, I believe. So that’s a big improvement in a year.:)

The Mapping

She had new software in her computer because of the newest FDA-approved model (Nucleus t)that Cochlear Americas came out with in the last month or so. So she had to feed the new information into my speech processors. I still have the Cochlear Freedom model. I’m happy with it and only had it a year. It would cost too much to upgrade to the Nucleus 5 anyway. It’s not too different except for the slimmer size and the remote. Who knows what new model(s) they'll come out with in the next 5-10 years? It'd be silly to upgrade every time a new model comes out. That's like buying a new car every two years or so. Why do that if it runs great?

After that was done, she did some changes to the programs. The Freedom has four programs. She put the volume 9-it has 1-9 volume control- to a 6 in program one (P1) and had increased volume in P2 and P3 was the focused listening program for zooming in on the person in front of me and cutting out background noise, and P4 remained my music program with a little bit of more volume.

So now, I have an 18-month visit (really 20-month), then the 2-year one and then once a year after that. I can’t help but relate my mapping appointments to well-baby routine checks. You get a lot of baby check ups in the first year and then they start to space out so it’s about once a year. In a lot of ways, my “new” ear is a baby. It is only a year and three months old.

It’s been worth it and if I had to do it again, I would.

What is an FM System? How Does It Work?

Off and on I talk about my FM system, a Phonak Zoomlink. It has the microphone and settings (surround sound or omni-sound, partial focus, and very focused (directly aimed at the speaker’s voice or object I want to listen to). This new receiver is custom-made for the Cochlear Freedom. It really puts the sound of the speaker, who may be thirty feet away, directly in my ear, as though as if I am standing right next to him/her. It is an assistive listening device (ALD).

Because I use an FM system, I know how it works and forget that some people don’t have a clue to what I am talking about, even those who have hearing loss and never used it.

Let’s get “clueful,” shall we?

(Source:http://www.phonak.com/consumer/products/fm/applications/whatisfmsystem.htm )

An FM system is a wireless system that transmits sound directly from source to ear. It consists of an FM microphone and one or two FM receivers. (This just means some people just use one receiver for one or two-one for each hearing aid/cochlear implant processor.)

The FM microphone is actually a microphone connected to, or inside, a radio transmitter. The microphone picks up the desired signal, which is often the voice of a person that you want to listen to. The transmitter then sends it via radio waves directly to the FM receiver. The FM receiver, in turn, is connected to the hearing instrument. The sound is delivered to the hearing instrument, the hearing instrument applies the right amplification and the voice can be heard as if the talker was speaking from a very short distance.

There are also Phonak FM receivers for cochlear implants and bone-anchored hearing aids. However, the basic principle remains the same.

In a previous post (Squeezed In), I talked about how I now have a new receiver for my FM transmitter(Phonak Zoomlink) because I only had one receiver for the hearind aid ear; I didn't have one for the new processor for the cochlear implant.

Here are some older posts I made about the receiver for my hearing aids:

My, What Big Ears You Have

The Boot

I hope this post gives you a much clearer understanding of how FM systems work.

Squeezed In

I finally got a new Mircolink receiver for the cochlear implant (CI). I mentioned to the vocational rehab counselor that I would need to have a new receiver because the old one with the HA (hearing aid) would not be made to fit the CI. Every receiver is made for a certain HA or CI. This receiver will be used for my wireless Phonak Zoomlink (pictured below). This is my FM system.

At the last appointment I had (the 3-month mapping) the audi said that the receiver still had to be cleared through the system. In other words, paperwork was slow and some compliance guidelines had to be followed.

She emailed me lastweek and said that the receiver was ready and that I could wait till the 6-month mapping (in February) or I could come in earlier. I said that I wouldn’t mind waiting for the February appointment.

Then she emailed back. DVR had budget cuts and rules about purchasing devices and having them (the devices, such as HAs, FM systems, and any other item that would help a DVR client in the workplace or at home) be sent to the client. In my case, I had to come in and have the receiver be fitted to my CI by the end of the year. I might miss my chance of having the receiver or wait until I am approved for one all over again. So, I was given a list of appointment times that were open for the month of December.

I was able to select the time and day of the appointment without any problem, hence the title for this blog post, Squeezed In.

Since I had a problem with the music program when using the personal audio cable (for use with MP3 players, CD players, etc), I thought I would get that looked at, too.

As I mentioned in a previous post, I had no problem with the TV/HIFI cable. I was getting sound through the cable. It had a built-in volume switch on the cable. I was able to get sound at volume 3. It had volume control switch numbered from 1-5. I wondered if I had a bad cable for the MP3 player and had that replaced. Still nothing. The audi thought maybe the volume wasn’t loud enough on the music program. She adjusted it significantly and I still wasn’t getting any sound. Then she pressed the button on my CI to the “EA” (external assessory). Whaddaya know? That worked. Hubby was playing around with the volume on the MP3 player which was still connected to my CI. Whoa!! It was loud!! I jerked up in surprise. LOL. Good. Now it works.

Then the FM receiver. I saw that it can only be connected to the disposable battery cage. I can only use disposable batteries with the FM. I cannot use the rechargeables. Funny thing: That was my biggest deciding factor to getting the Cochlear Freedom vs. Advanced Bionics or MedEl. (I am not knocking AB or MedEl; I know there are very many happy AB and MedEl customers.) Why is that “funny”? Because once I came home with the CI after activation and once I had the rechargeable batteries recharged, I didn’t use the disposable batteries again. I liked using the rechargeables. But the dischargeable batteries will come in handy as a back-up (for short trips and stuff so I wouldn’t have to bring along the recharger).

Anyway, once the receiver was set, the audi wanted to test it. She told me to turn off my HA in the other ear. She was going to step into the hallway and ask me two questions.

I heard her very clearly. “What color is the shirt you are wearing?” and “What did you eat for breakfast?”

When she walked in, I was already digging through my jacket and zipper-front sweatshirt to see what color my shirt was (LOL, I forgot what I was wearing!!) and told her it was white and that I had two pieces of toast.

She was impressed and glad that the FM system was working so well for me. Heck, even I was surprised. LOL. It was a lot better than with just one working ear with the hearing aid. I guess it was the degree of hearing loss I had, too. Instead of working with just half an ear, I am working with one and a half ears.

I still think of myself as deaf, though. I don't think I'll ever really have "normal" hearing. It's as close to "normal" as I can get. I'm happy with that.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

CI moments? Hmmm.

When I was in the bathroom, I could hear Onyx whining through the closed door.

When Hubby comes in the house, I could hear the jingle of his keys as he plops them on the kitchen counter when I am in the living room, my back to the kitchen.

Someone brought up shopping carts. Last weekend, I had a sort of a marathon Christmas shopping spree. I was at Wal-Mart and I had a noisy cart. It felt like something was broken and I kept looking at the wheels. It was disturbing and not at all pleasant-sounding.

Last night, Angel needed to memorize her memory work. (For the last few weeks, it consisted of all the recitations and songs that she will say and sing with her group for the Christmas service.) She panicked when she saw how big the paragraph she had to memorize. She whined that she "can't do it" and I told her to just work on one sentence at a time (just like she had to do with all her other memory work.) We got through the whole paragraph in 15 minutes. By that time, even I memorized it so that I could correct her if she missed a phrase or something. Then I told her to sleep on it and this morning I recited the paragraph to myself and thought that she shouldn't have any problems, either. She recited it with a beaming smile because she remembered it. :)

And, how was YOUR week?

HUGS

Rather Annoying Noises...Surprising CI Moments

Glitter Grapics

There are some sounds I knew were there. I’ve heard them before, but I had no IDEA that they were as annoying or as loud as they were.

The other night, Angel wanted me to blowdry her hair. I complied. I didn’t want to have her go to bed with wet hair and wake up with “bed head” or worse.

Who knows what it might look like in the morning?

glitter-graphics.com

The moment I turned on the hairdryer, I was surprised that it was LOUD. And. So. Annoying.

Granted, I don’t wear my CI or HA when my hair is wet, especially not when blowdrying my hair.

Wow. Is that thing LOUD!!

I knew it made noise. I still had some residual hearing in my left ear which has always been my better ear. It was just a motorized hum, a kind of a white noise. Just a bunch of hot air blowing around.

Well, the blowdryer doesn’t just have a hum, it has a LOUD, annoying hum. Talk about VOLUMIZERS on hairdryers!!)

How can hearing people stand it? Whoa. I think I could never think of it as “white noise” because I rarely blowdry Angel’s hair anymore. Sure, I use it a lot, but, again, I don't wear the HA or CI when I use it.

``````````````````````````


Now the next surprising “noise” I am going to share with you isn’t new. I knew it was there, but really had no idea it was THAT loud.

Hubby fell asleep on the couch watching TV. He started snoring. LOUDLY.

I look at Angel and say, “Does Daddy always snore that LOUD?”

Angel: Mommy, I can hear him from my room!!”

Me: Really?

Flare: Mom, I can hear him snoring downstairs while I’m in my room.

Me: Really?

What bliss!! I can sleep through his snoring. I don’t sleep with my HA or CI.

(Sorry Hubs….yes, I know...I snore, too….I bet you snore louder…winks)

Even Topaz snores. LOUDLY. (Whoa.) Even though Onyx snores sometimes, but not that LOUD and not always. She more or less just barks what I call “bubble barks”. She just gets air out of her closed mouth and then she just has this “puff of air” bark. (Sweet dreams...chasing that obnoxious squirrel, are you?)

```````````````` ```````````

The benefits far ouweigh the negatives about getting the CI, even annoying noises. At least I'm not exposed to them ALL day. :)

Music: I still use the TV/HIFI cable to listen to music on the computer. It works just fine. I need the volume switch on 3 in order to pick up sound. (It has a volume switch numbered from 1-5.)

I’ve tried the personal audio cable on Hubby’s MP3 player. Nothing. I don’t hear anything. I put the music program on my CI on full blast. Nothing. I tried it on Flare’s iPod. Still nothing.

I emailed the audi. I told her I didn’t know if the cable was a dud. This cable didn’t come with a volume switch.

She ordered me a new one. I would have to exchange it with the one I have and return it.

I tried it again. Nothing.

The audi thinks that I just need the map on my music program to be set at a louder volume. I’ll wait till the six month visit to get it looked at.

It still works with the TV/HIFI cable, so I’m happy with that…for now.

I still surprise myself, though. I can hear sounds through closed doors. It’s not clear, but it’s there.

That's it for now. :)

HUGS.

Long Time No See

Hello, everyone. It’s been a while so I thought I’d post something so you know I’m still around. :) I hope everyone (in the US) had a great Thanksgiving.

Last week I had my 3-month mapping (the personalized adjustments made to the CI-cochlear implant-that helps me to hear in all kinds of situations).

The first thing the audi (audiologist) did was put me in jail, that is, the sound booth. I am familiar with the layout of the room now after three visits. It is dark in there and for us Usher folk, it takes time to adjust to the darkness. I have to take a step into the room and walk over to the chair. The first time I went in there, I found the arm of the chair but almost found myslf on the floor because I thought the chair was turned to me when it was turned at a 90 degree angle, not 45 degreej angle. Once I sat down, I faced a huge speaker and to the right of me, is a window to another darkened room where the audi does the testing. I can see her outline in the tinted window.

She told me to turn off my HA. So I just took it out and cradled it in my right hand.

One word tests were awful. I may say words that rhyme with them, the beginning, middle, or ending sounds of the word, like shoe for shoot or bake for make. I scored 36%, up from 26% at the 1-month testing.

Sentence test: I scored 87%, up from 79%. And with my HA and CI, I got 93%.

Then the audi made it challenging. I had to be tested with noise in the background, like voices in a crowded restaurant. I scored 40 something percent. I was also tested with sentences with me telling her what the last word of a sentence was. That can be hard because most of the sentences started with “They discussed the ….,” “They were talking about the …..,” and “She was considering the …..” Augh. Those were hard because with sentences, I could fill in the blanks with the context of the sentence. When it’s vague like that, there’s no context.

Here are the test scores of my speech perception and what some of the abbreviations mean.

HINT=hearing in noise test
CNC=consonant-vowel nucleus-consonant words (one word tests)
SPIN=speech in noise (various tests with static or people talking in background).



(You can click the grapic to bigify if you want.)

The CI gives me more hearing, environmental sounds and conversational, but I still do best one-on-one for optimal results. I am still deaf. I still struggle in crowds. I am still shy and awkward. I still worry about saying something stupid. It doesn’t change my personality (i.e. life of the party) or anythinhg. I am still me, new and improved hearing-wise, but still me.

glitter-graphics.com

The other day, Flare and I talked about her choir class. She’s a soprano (she can get to the high notes without cracking her voice). She’s a really good singer. We were looking a hymnal and she was telling me about the rows of musical notes. I am musically illiterate; I cannot read music. There may be three different notes for the same syllable/word of the song. I had no idea what they meant. I was never taught about those notes to that degree. I told her about how I was placed with the altos for Christmas services in high school. The music teacher never heard my voice. He just placed me with the altos. Flare just shook her head at me because her teacher separates the altos and sopranos and whatnot for each student by their singing voice. My music teacher never heard me sing. I never did. I just lip-synced it. I had no musical talent and I grew self-conscious about it when I got a lot of stares and people turning to look at me because I sang terribly. When I attended high school, it was on a volunteer basis to be a part of the Christmas service. It meant a great deal to my mom for me to be in it and I only joined to make her happy. I was not an asset to the services at all. Today, some twenty years later, that same high school changed some things. It was now a requirement to be in the Christmas service in your freshman year. It was part of the curriculum. In other words, it was part of Flare’s grade in choir class.

Last Wednesday, Flare left to spend the Thanksgiving weekend with her dad. That night we, Angel and I, needed to get to church. The taxi came on time to pick us up. Angel was part of a choir that included 3rd-8th grade volunteers. They were sometimes accompanied by the adult choir. I was not able to hand my Zoomlink (FM system) to the pastor, which I only use on the HA until I can get the necessary parts for the CI (the receiver). Because this service was special for the holiday, it was not the same as the regular services. I got confused at times, sitting in church by myself without Flare’s help, since Angel was sitting with her group.

After the service, the pastor wanted to make sure I was doing okay. I told him I was. He said he saw me come in, but I didn’t see him. (Sometimes I get there late and he is in another room, getting his robe on before the service. He wanted to make sure I was understanding the service since I didn't give him my Zoomlink. I told him I was fine.

Then Angel and I waited. And waited. And. Waited...for the taxi to pick us up. After about 25 minutes, I called the taxi (after asking-well, really, Angel did the asking-someone where the phone was). The dispatcher on the phone said, “The taxi should be there soon. Sorry about that,” after I inquired if there was a taxi coming because it was almost a half hour late and if there was a mix-up. I realize that the taxi has a lot of other people to pick up, but still, I requested taxi services hours earlier. It should have been on record.

One of the many drawbacks to giving up driving (for my safety as well as everyone else’s) is the WAITING. I can’t get in the car and go whenever I want to. I gotta WAIT.

Some church members who saw us waiting offered us a ride home. There must have been four or five different offers. I felt so humbled. I said that a taxi was supposed to be on its way, that it was late, and I didn’t know if the taxi would charge me anyway if the driver came to pick us up and we weren't there. I was tempted, though, to take up the offer.

Finally, after being 40 minutes late, the taxi came. Angel was antsy. She wasn’t happy that I turned down the offers. She was whining about wanting to be home. That really made me frustrated even more, that I couldn't fix that.

When I got home, I felt so frustrated and shed angry tears. I let myself have a little pity party, frustrated that I had to DEPEND on others for transportation, then I had to square my shoulders and move on. Some argue that it’s not about losing “independence”, but about “inconvenience.” I can’t help but feel that it’s both of these. Getting around still a major part of life.

To snap out of it, I had to count my blessings and look at the things I DO have and be thankful for them. One of them, obviously, is the CI.

Now that I have a bionic ear, it’s given me some of my life back. I am hearing things I never knew made a sound; it brought back sounds I no longer could hear; I can hear sounds from a farther distance.

Now, how about a bionic eye? :)

Cochlear Implant 101

Just thought I would talk about the components of the CI (cochlear implant) and how it works.

After I ran into two people who thought that once I had the internal implant in, I was going to automatically start hearing "normally." It's not like a pair of prescription glasses-presto-your vision is corrected. The internal implant alone does not work by itself. It needs the external components of the CI, too-the processor and the magnet in order to work. And I still needed to be activated and get a map at the time. (A map is a personal, individualized programming of the CI. Like fingerprints and snowflakes, no two are the same, even for bilateral implantees. Everyone has their own comfort level of what they can hear and it is adjusted to fit that threshold.)

I copied this from the Cochlear Freedom literature I got from the audiologist.

Each caption in the above graphic talks about the implant: MRI safe, up to 1.5 Tesla with the magnet removed, built with titanium and platium (tested by the US Military), has 22 electrodes, and a soft tip to minimize force during surgery thus it could preserve residual hearing.

The picture below gives you an idea of the internal implant's size.

Internal implant

The picture below is what the Advanced Bionics processor looks like:

This is the Advanced Bionics internal implant:

This is what the magnet, coil, and processor look like. (This is the Cochlear Freedom, the one I have.) The second picture gives you an idea of what it looks like when someone is wearing it.

Off the ear

Cochlear Freedom (external components on the ear)

In the above picture, numbers 1 and 2 are described:
1) BTE (behind the ear) speech processor

2) cable and coil

Cochlear Freedom

1) Sound Processor - external component that converts sounds into digital signals
2) Digital signals are sent to the internal implant
3) Electrode array - internal implant converts digital signals into electrical energy, sending it to an elctrode array inside the cochlea
4) Hearing nerve - Electrodes stimulate hearing nerve, bypassing damaged hair cells, and the brain perceives signals as sound.

(You can click the above link "Cochlear Freedom" for a diagram of how normal hearing works.)
Other links that describe "How a CI Works":

Advanced Bionics, LLC-How a CI Works

How a CI Works

(I borrowed the two links above from fellow blogger, with permission. She saved me some research. Winks.)

Here is a good link that describes all three brands of cochlear implants (Cochlear, Advanced Bionics, and Med El).

Hope this helps. :)

HUGS

(Some pictures above are copied from Google Images and if you click on the pictures, you will find the source of the graphic.)

Roses, Puppies, and Food...oh, my!!!

Hubby peeked through his eyes at me as I popped into our room to do something (obviously not quietly enough, LOL) and then he pointed at the dresser saying, “Didn’t you see that yet?” I follow the direction of his finger and look at the dresser. On top of it was a card and a small package of M&Ms.

Oh, it was Sweetest’s Day. (I forgot. He’d have gotten away with it…LOL)

After reading the card, he says, pointing at the dresser again, “Didn’t you see it?”

I frown at him. What? I look at the dresser again. A good foot from the spot where the card and M&Ms were, off to a back corner against the wall, were a dozen long stemmed roses in a vase. Of course, I didn’t see it. All I saw was the card and candy. The vase was a good foot away, in a dark corner. My mouth opened in shock. I hadn’t gotten roses in a long time. It was always a bouquet of irises or something. Of course, Hubby recently acquired a large vase on one of his successful Household Sales shopping finds. We have a thin vase and that cannot hold a bunch of roses.

I took them downstairs and set them on the counter. (A few days later, Angel informed me that there were 18 roses, not 12.) I just assumed that there were a dozen. I didn’t think about counting them.

(Everybody now….AWWWW). Thanks, Hubs.

Hubby went pheasant hunting early that afternoon with a friend and came home empty-handed. He said that his friend heard about a German shorthair that needed a new home.

Five months old.

Housebroken.

Good hunting potential.

The people who own the dog needed to give him up because the house they were living in changed ownership and the new landlord says: No dogs allowed or they’d have to move.

So Hubby went to check out the German shorthair. And brought him home. The moment I looked into his topaz (a warm golden tan color) eyes, I just melted. He’s so cute. He has a roan coat with white “freckles” all across his body, like a fawn, only that the white "freckles" are just littered all over his body. He has a short, stubby tail that when he wags it; it just makes his whole backside wiggle. Onyx and “Topaz” seem to get along well. They wrestle and play together. Even Onyx, who’s very laid-back and content to just lie around, got more active and somewhat competitive. Can you see the resemblence in this photo? Heads tilted, ears perked...

(Everybody now...AWWWWW.)

Things are livelier around here, that’s for sure.:)

Hubby got more dog food and started mixing two different dog foods. Onyx always seemed “messy” (bits of dog food would be all over her food dish); though I suspect she was just being picky and eating her favorite flavors. Topaz is our “sidecleaner” and cleans up the mess Onyx leaves behind. Saves me the work of cleaning up her mess. LOL. Good boy.

And we were very low on essential foods in the house. Bread. Milk.

Hubby went to a local bread shop and got discounted bread. And then he took us all to the store to get more food to stock up the refrigerator and pantry. Only thing was, it just doesn’t seem like I got a lot. Isn’t that awful? You can get so many bags of food and there’s more money spent than there are food. Arrgh.

I’m going to have to try out a new grocery store and see how that works out. Would I get more for my money? We shall see. For me, I just hate having to familiarize myself with new stores. (Of course, some of the stores I frequent like to move things around every so often and I'd have to re-familiarize myself with where certain items are.)

So, it’s been a pretty big week here.

I don’t have new news to report about any CI (cochlear implant) moments. One blogger mentioned using the phone with her CI and hearing almost everything the speaker said. So I told Hubby to use his cell and call me. LOL. He used random words with one to three syllables so it was harder for me to determine what he was saying. He would say things like “watermelon” and I guessed “walking?” Next time I’ll have to have him say sentences. They’re easier. You get to fill in the blanks if you can’t get everything.

I know, I know. I’ve said it before. I’m becoming a weekly blogger. Sorry.

Dogs...

Kids....

What can I say?

My oldest daughter uses the computer more now to do homework and download songs on her iPod via iTunes. We have a slow dial-up connection, so it's a looonnnggg process.

So I don’t have as much computer time as I used to, either. (With me being done with school, thus no homework to do on the computer, really cuts down on my own computer use, too.) Obviously, there is LIFE out there...

I am still here. I’ll try to stop by and visit your blogs when I can.

HUGS

Close Encounters of the Magnetic Kind

glitter-graphics.com

The other day, when I got out of the shower, I decided to let my hair air-dry. That meant no CI (cochlear implant). It’s water-resistant, but that doesn’t mean you can take a shower or go swimming with it or anything, and that includes hair that is wet. I even took it off and put it in my pocket when I got caught in the rain. I'm not taking chances. (I even go sans CI and HA-hearing aid-when I work out. I drip sweat behind my ear and the back of my neck. No way do I want a drop of sweat to fall into the HA or CI processor’s microphone. Zap City. Sure, I could drop it in the Dry and Store (a dehumidifier thingy for the CI, though I now throw in the HA, too). I am guilty of sometimes using the HA during my workout sessions-shhh, don't tell my audie. Lately, though, I stay in the house and work out, so I don't really have to worry about listening for traffic and the HA stays off.

So, with my hair combed back, I reach outside the bathroom door for my HA, which is placed on a shelf on the wall just outside of the bathroom. The shelf is used mainly for gloves and hats. I reserved a spot to place my HA and CI. The steam from the shower is not really good for them (more moisture), so I place it on the shelf just outside of the bathroom door. Easy reaching distance.

I pick up my HA and see that the battery door is open. No battery. I could mentally scan my route from the bedroom to the bathroom. Sigh. But 99.9 percent of the time, the battery would be found on the last place I put it or the last place I picked it up from. So odds are, it’s on that shelf or on my night stand (or in the general area of the shelf and/or night stand.) I pick up the CI on the shelf and feel around for the battery. Nope.

I go into my purse to grab another battery.

I go on all fours, my hands feeling all over the floor under the shelf. I look at the shoes under the shelf and shake the shoes lined up thrown helter sketter against the wall under the shelf. I (bravely) stick my hand into the shoes to see if I could feel a half a dime-sized battery. Nope. Sigh. I didn’t want to rummage around the night stand, because Hubby was still sleeping. The stairs were a no-go, too. They were too creaky. I sweep the floors in the dining room. If I can’t find it, the broom will. (I do this a lot because I have a hard time finding things I drop. Out comes the handy broom, my life saver.) With my vision problems, stuff like pens and coins are the quickest for me to find ths way. (You gotta do what you gotta do.) :)

Nope. No battery.

After about an hour or so, my hair (I have thick hair) is dry enough for the CI. I go to the shelf and grab it.

I start laughing.

Clinging to the magnet was the run-away battery!! LOL.

(It must have opened the HA battery door somehow and the rest is history. )

And the day before that, I was cleaning our dog, Onyx’s (our shedding machine), bed-crate. She’s a slob. Her dog food would be all over the area of her dish, around the floor…ugh. Messy eater she is. (But we love her anyway. Mess, dog hair, and all.) I took out the water b0wl, which had about three stray kibbles of dog food that grew three times its size, saturated with water. I fish it out and throw it in the garbage. I rinse out her water bowl, add fresh water to it, and fill up her food bowl, too. I get a rag and clean out the crate. While my head is inside the crate, I suddenly go deaf. I had no stimuli. What the? The magnet decided to cling to the steel crate. I laugh and put it back on my skull behind my ear.

I find myself in more “sticky situations” nowadays.

(This gives a whole new meaning to "CI Moments.")

Remember When...?

Remember when I mentioned my pre-implant audiogram that verified my candidacy for a CI (cochlear implant)?

The ones marked with the Xs is my left ear, the implanted ear. Note how some of the areas of hearing loss was off the charts (120+ dB). No one likes the feeling of failure, failing tests, even if you really couldn't help it and couldn't really "study" for it.

Look at the audiogram below, one month post-activation. (Not post-op, but after getting the initial mapping for the CI).

What a difference!! The "C" means "with cochlear implant".

Here is a detailed work-up of my hearing tests, both with sentences and single words. I didn't have any testing done with "noise interference" to make it more challenging. I bet that will come with the 3-month post-activation testing. (Click chart to bigify, if needed.) It tells you about my pre-implant testing results back in January and the most recent testing last week. The right ear is the one I still wear a hearing aid in and was the only ear I could hear out of pre-implant.


On the home front, there isn't much to report. I am recovering from a nasty bug and now Flare's down with it. Hopefully it will stop there and no one else will come down with a cold.

Last week, the start of autumn was like a false alarm. We had warm, sunny days. This week, however, autumn is showing its "true colors". More leaves, mostly the yellow ones, are dropping off the tree branches.

Talk to you all later.

HUGS.

If It Quacks Like a Duck...

glitter-graphics.com

Today was the day of my third map. Already!! So much progress, so much time. I am holding on just fine and dandy.

Dreading the word comprehension testing as I always do, I knew I just had to do what I could. (Really, no one likes to fail a test!!) First the audie put me in the sound booth (a short jail term of maybe 1/2 an hour. I can handle that...) to hear tones. High ones. Low ones. Weird ones. I had to raise my hand every time I heard a sound, no matter how soft. The soft ones are tricky for me. Do I hear it? Is that what I’m hearing or is that an echo? After that was done, I was tested on single words with a male voice recording. The man always said, “Ready” before the word. (Ready…word, ready…word.) Then, with the male voice again, I was tested on sentences.

Before the CI (cochlear implant) I had a CNT (could not test-no speech could be heard) in the implanted ear (before it was implanted), but the right ear (the hearing aid-HA-ear) test results for the word test was a paltry 6%!! After a month of activation, I got a 26%. The audie/cheerleader said that it was good for a one-month post-activation test. Patting myself on the back. From 0 to 26 in one month. Zoooming off. Whoo-hoo.

With the sentence test, before the CI, the ear had a CNT rating, but the HA ear got 46% in Sept. 06 and 32% in January 08. Now, with the implanted ear I got 79%. (0 to 79? What kind of engine is in that CI anyway? Winks.) Not bad. I was SOoooo surprised to do as well as I did. The voices are still robotic, but I’m getting more sense of it every day and with today’s new map, the robotic sounds are really tapering down. Yep, a little less “ducky.” You know that saying “if it quacks like a duck and looks like a duck, then it MUST be a duck? Well, obviously, not every person I talk to are ducks. LOL

She also balanced out the electrodes. She had two electrodes go off with a beep sequentially (one after the other) and I had to tell her if they sounded the same or whether one was louder or softer. They all had to be equal-sounding. Sometimes it was hard to tell, but I did get the more obvious “higher” or “lower” beeps. I could almost picture the electrodes as a xylophone and hitting the same thingy twice. Ting, Ting. Or Ting, Tong. Nope, didn’t match.

BTW, you guys know I call the CI “Pete” or “Petey”, but Hubby says it should be “Mr. Roboto” after a song from Styx. LOL. Okay, so that can be Petey's nickname.

Instead of all the programs with ADRO with increased volume, I have:

P1-ADRO
P2-ADRO with more volume
P3-Focused Listening (Beam)
P4-Music with autosensitivity

I kind of slapped Hubby on the knee and obviously hinted around with “MP3 player for Christmas” LOL Great for listening to music. Winks. I was advised to listen to familiar songs (Hubby piped up with Christmas carols and I am thinking of my favorite songs that I know-mostly those that were popular in the 80s and some country songs, too.)

My next map is supposed to be for the 3 month mark. That is in November. The audie did say that I may call or email her with any problems and if I needed a tweak or fine-tuning, then I could come in before the 3-month appt. Let's see how much Petey and I work together by then and get a 90 0r better? Sentences are easier because they do fill in the blanks somehow and I can get them in context. Single word tests are hard for most of us. There's nothing else to work with. I might get the ending (rhyme) or the beginning of the word ("sh") or even the middle of the word (vowel) or something.

On the home front:

glitter-graphics.com

Angel got to race with her peers in a Fun Run thing that a local organization set up for grade school kids. (Last week it was canceled because of the rain.) They get a free tee shirt (who cares that it had the original run date on it?) for participating in the run. Angel ran with the other 3rd grade girls. Only one girl was a classmate and one was a girl from our neighborhood that we knew. They only gave out first thru sixth places. Angel made it to the sixth place!! Yay. You go, girl!! I treated her to a shake for her accomplishment. She liked that. It was a ½ mile run, too. She said she got tired and walked a bit, but I’m still proud of her. Next year, fourth grade boys and girls race together (not separately). She’s kind of freaking out about that. Boys are fast!! Well, if she wanted to, she could work at it and be faster. I’m not going to push her, though.

The end of the week is the mid-quarter time for Flare. I have teacher conferences next Monday. (I never knew that there were conferences in high school unless there was a serious problem. I had to ask my mom about that. She said that they went to the conferences. I guess that because my parents were active in several organizations like Lion's Club, investment clubs, and stamp clubs, that I never really questioned their comings and goings.) Anyway, I am not really complaining too much about her grades so far (I check her grades online. Isn't that something? Information Age has really come so far.) :)

Angel is too young to have mid-quarter progress reports. I think they start at 5th grade at her school, but there will be a parent-teacher conference at the end of the first quarter. The graded paperwork that she brings home every week are really good, so I am not too worried about her academically. She does have some issues behavior-wise. She's very hyper and cannot sit still.

The weather here has been GREAT. Lots of SUN and cool breezes. Yesterday marked the first day of autumn. It still feels like summer. Yeah, I know. When school starts, you feel like summer is over, but technically we still have a few weeks left of summer when school starts. The calendar doesn’t lie, people. Right? LOL. Just wait till the first snow-I’ll be yelling at Jack Frost because we don’t start winter till Dec. 21. It doesn’t matter if we get Indian Summers in October. No, that doesn’t count….

Dropping a Line

Just wanted to quick drop a line (or two or three...)....

glitter-graphics.com

All Hubby had to do was walk in the house and startle me. I'd jump, I'd scream, I'd gasp and clutch my chest like I wanted to make sure I could catch my heart if it popped out, or all of the above. He would look at me and say that he doesn't mean to sneak up on me. He didn't have to try.

I could be anywhere in the house and I'd hear him. Squeak, creak. (Did I say our house is over a hundred years old? I guess I would squeak and creak, too, if I were a hundred years old.) I'd say, "I hear you." Sometimes I turn to look at him. He'd grin and shake his head and say,"I never meant to scare you before, you know." After a few more times of my turning to look at the source of the creaks, he'd continue to grin at me and say,"Now I will HAVE to sneak up on you!!" Aww, poor baby. I bet he enjoyed his ability to "not" sneak up on me and scare me at will. Now he just has to work at it. (Yeah, that means I hear the kids more, too. I am more aware of when they are coming or going, too. The "mom antenna" is more "tuned up" now....a HA!!)

I was sitting by the open window, reading (usually that will make me so engrossed in the book that I am totally unaware of what's going on around me unless I felt something vibrate, like someone "breaking some wind" on the couch. (Hubby says I wouldn't have to wait till I "felt" it; I would just have to look at the source of the sound and say, "Okay, who farted?" LOL.) I heard some kind of crunching sound outside. I look out the window and see Hubby riding Flare's bike, testing it. Her front tire was flat. She must have ran over some glass or something. The thought crossed her mind that maybe it was sabotaged, but Hubby got a new inner tire for it and said that it didn't look like it was cut or stabbed, so it must have been something she ran over. He also fixed her brakes a bit, too. Flare and I thank him for that. The brakes on her back tire will need to be replaced. Her bike is about four years old and it has had a lot of use over the last two years riding to it to school. (She carried her very heavy bike about five blocks and went to see if a friend could take her home. That was nice. Thanks again, to the friend who put her bike in the trunk and gave her a ride home.) Flare's arm is still sore from her bike-lifiting. The wheels wouldn't, well, wheel, very well being so flat.) She called home and this is what I heard:

Me: Hello?

Flare: Mom? It's Flare.

Me: Flare? Are you still at school? (I looked at my watch. It's about 4:30.)

Flare (what I could hear): ...bike...broke

Me: Your bike broke?

Flare (again, what I could hear): ...D, your interpreter...

Me, confused: Oh, it's D. I thought you were Flare.

Flare: Mom!! It's me, Flare.

Me, really confused: Flare? I thought you said you were D.

Flare: No, I'm at D's house....bike....

Me, the puzzle pieces falling into place: Oh, your bike is broke and you are at D's house. So she's going to give you a ride home?

Flare: Yes.

Me: Okay.

(Whew. Can you see how easily I can be easily confused when I was sure I was talking to one person and then I hear another name and it'd just throw me off? LOL)

I try to turn off my hearing aid at times and just see what I can hear with the CI. Voices are still very nasal-sounding, robotic. It isn't so high-pitched anymore, but it's not clear either. My hearing aid ear takes over for the phone use and speech recognition, though my audiogram says that my hearing aid ear had 32% speech recognition. But I can tell you that, at times, when the HA is blending with the CI, it "overpowers" the hearing aid ear. It picks up voices robotically and other sounds I wouldn't have picked up with the hearing aid alone. I was sitting on the loveseat in the living room and Flare was on the computer, singing. SINGING!! Did she do that all the time? Yes, she did. Whoa. I must have looked like a very calm, tuned-out Mom. LOL.

Onyx is a very noisy walker, too. I never paid attention to how much she drags her feet. I didn't even realize dogs could drag their feet. I can hear her lap up her water.

For the most part, the environmental sounds that I first heard are fading into the background (clock ticking, my breathing, even the "buzziness"). When I was outside, I thought I heard a mosquito buzz. Do they buzz? (I still don't get enough of a warning before getting bit, though. Sigh.

Since Angel's new school is on the outskirts of town now, during recess the kids come across garden snakes (garter snakes), toads, and caterpillars. Angel needed wanted a container to hold a caterpillar so she could keep one. She brought home a fuzzy brown and black caterpillar and named it "Tickles" because it tickles her as it walks across her hand with multiple sticky feet. The school yard is a nature wonderland. I hope there aren't anything dangerous lurking out there.

My next mapping is next Tuesday. Maybe this time I'll get some BEAM and/or autosensitivity programs mixed into the CI settings? These are different settings for the CI. So far all I have had to work with was ADRO with increased volume in each program. Baby steps....


A brief explanation of what these options are:

1. ADRO-for dynamic, changing environments

2. Whisper-soft and distant sounds

3. BEAM-focused listening in crowds

4. Autosensitivity-comfort in noise

Source: http://www.cochlearamericas.com/Products/22.asp

HUGS

Alvinated Moments with the New Map

glitter-graphics.com

Alvin and the Chipmunks

This, I think, is more like what some of the others have said about their activation. I had a lower volume in my first map. I’m glad I did, though. Weaning is good. I honestly don’t know how I would have done if it was so loud right away. I did have traces of heliumized voices during the past two weeks, but with the new map (increased volume) I really notice it.

After I had my CI (cochlear implant) adjusted for the new map, that night as I was doing the dishes, I could hear the water running. It sounded “normal.” I heard the dishes clinking. It sounded ‘NORMAL.” Cool.

When I was outside the other day, I heard the fire trucks going. I quickly turned off my HA to hear the sirens. It was a buzzy siren, but the high pitches were clear. I couldn’t tell you if I would have recognized the sirens if it weren’t for my HA, though.

I heard Onyx bark at me as I was standing at the sink. Her bark isn’t “normal,” but she still has the cutest yip. Sometimes when her water bowl is low or empty, she lets me know in this way. It’s one of the ways she communicates to me about her needs. While we don’t really encourage her to bark, she is a really quiet dog. When the doorbell or phone rings, she doesn’t move or bark. It’s no big deal to her. The only other time she barks (or should I say “yip’ because it’s not a real bark.) is when she wants to be with someone outside. If she’s inside the house, she’ll yip by the door. Or if she’s outside, she’ll yip because she wants to play. Other than that, we don’t usually get a peep out of her.

With the increased volume of the new map, voices are more heliumized than ever. (Where are they getting the balloons from? Just kidding.) I would turn off my HA (hearing aid) and listen. I watched TV. The voices are a bit buzzy and heliumized, but I tried to follow along with the closed captioning. I would make sense of the words as I read them, but I know I wouldn’t have interpreted it on my own. However, the sitcoms I watched always have laughter from a live audience (or is that always fake?). In any case, the laughter sounded “normal” to me!!! More and more sounds are easier to recognize.

The moleskin the audie put under the ear hook did help alleviate the soreness around the tip of my ear, but I worry about it getting dirty and hard to keep clean.

I worked out this morning. I jogged in place for 40 minutes followed by some weightlifting with 3 lb handbells to tone the arms. I really worked up a sweat, so I decided to take the CI off. Using only one ear, the HA ear, I noticed that things sounded “flatter.” What a difference!! It was like the CI actually is starting to blend with the HA ear.

I am really paranoid about washing the CI. I’ve seen the video, but I am still wary about getting too much water into the processor. I don’t want to wreck or hurt its performance.

On the home front, Angel got a free dictionary. It was given to all the third graders. I couldn’t believe that the longest word was this. Can you say that in one breath? Whoa. I bet I'd never pronounce it right. LOL.

The weather’s been on the cool side. Yesterday it poured and today was kind of a cool humid day. I don’t even know a weather term to describe a cool day with cool moisture in the air. It’s not misty, just an overall cool day.

Both girls seem to be keeping up their grades well. I had to email Angel’s teacher. Her teacher mentioned that she got “worked-up” a few times during recess. Angel LOVES recess. What kid doesn’t? I had to ask her what was up. Angel didn’t know. I wasn’t sure if “worked-up” meant hyper or emotional. Angel can be very hyper. Sometimes she gets issues with the neighbor kids-they get into a power struggle of sorts and if Angel got tired of doing things they wanted to do, she moves on and wants to play with someone else. It turns out now that Angel fell on her knees a few times playing tetherball and that was why she was “worked-up” (the emotional kind).

Flare’s high school has a website set up for parents to access the current gradebook. This is pretty common, I know, and I think this is a great way to maintain communication with kids. She’s doing really well. Sometimes I can’t believe this is the same girl who struggled in school a few years ago. I was actually worried that I entered her too early (she just turned 5 in kindergarten and just made the September 1 cutoff.) So I am proud of her accomplishments.

She’s also on the decorating committee for Homecoming. She is artistic, so I am sure she’ll have a few ideas.

Well, that’s all folks.

Family Update and New Mapping

glitter-graphics.com

Sorry, guys. I've been so behind. I'll try to do my blog rounds when I can. It seems lately that I"ve been playing catch up with my emails and not my blogging. I'm here.

I've been getting into a routine with Petey (my cochlear implant) along with some adjustments at home with the girls back in school.

I've also been enjoying the nice autumniod weather we've been having the past week. I'm half expecting the leaves to turn into fiery foilage, the kind that airbrushes the trees in reds, oranges, and yellows. I haven't spotted any squirrels "nesting" the nuts. The squirrels here are pretty nutty. Hubby had to set a trap in the attic. About a year or so ago, we had one living up there, tearing up cardboard boxes (for the glue that holds the boxes together). I guess that glue comes from tree sap or something. Hubby did trap one and let it go miles and miles away from home.

Then earlier this spring, another squirrel is trying to reside in our walls in the attic. We've been trying to keep it away from it. Flare actually got a video from her camera showing how mad that squirrel was at us because we were outside, preventing that squirrel from getting to the roof. Unfortunately, I cannot upload that video to show you that video. I am not sure if that video is just too long or what. I can watch it on the computer, but I can't upload it. Oh, well.

The girls are settled into school. Flare says that high school isn't as bad as she thought it would be. She's outgoing and making new friends. She plans on going to the Homecoming dance with a bunch of girls, just to have fun. Angel likes her new teacher and she has three new kids in her class (bringing the total to 13, with another new kid coming in October yet). With no deadlines, and pressure from my schoolwork anymore, I am much more calmer about helping Angel with her homework and memory work. She's had to memorize various Bible passages and hymn verses three times a week. She loves the new playground for recess.

Flare just had her school pictures taken last Thursday and now Angel gets hers this coming Thursday. It seems that picture day is scheduled earlier and earlier in the school year. I could remember it being in October all the time.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Glitter Graphics

When we got to the facility for the map (Petey is still a baby, getting his second "routine" check...then in another two weeks, he gets his one-month check...growing in sounds), Hubby parked on the second level in the parking garage. A first!! So instead of going to the elevators to get to Level 2 and then entering the hospital, we just had to enter it, because we didn't have to get to Level 2. The last time, we just had to get on another elevator to get to the second floor, and then get to the third floor in a different elevator. But Hubby was just walking along, with me hanging on to his arm. I just figured that he just knew where he was going. Nope. I then told him; don’t we have to get to the third floor? He was like, oh, yeah, the parking ramp screwed him up. LOL. (Really, I am the BLONDE one, not him.)

Finally we get to the front desk and register. We only waited for a few minutes and there my audie was. She asked how things were and started the soft-comfortable-loud tone test. I got it louder, but it’s all on the same ADRO setting. Nothing fancy. She’s still weaning me into it. Every audie and center does things differently. I'd rather do it slowly than to just jump in and get overwhelmed.

I did tell her about how sore the tip of my ear was and she put some moleskin under the ear hook to see if that would be better. So far, so good. If nothing else, I figured I'd get a blister and then it'd toughen up.

She put me into a sound proof room to re-audiogram me. In the CI ear, unaided, I totally failed. I have no residual hearing in it whatsoever. I kind of suspected that because I tried putting my other hearing aid in it just to see if I could still her that “beep” when I first turned it on. Nope. It was gone. I know some still retain some residual hearing after a CI surgery, but not all. I’m okay with it. The CI is my ear. Good old’ Pete. :)

I did tell her I felt kind of lightheaded (more than usual, anyway. Winks. LOL) when she tried to test the CI ear unaided. It kind of pulsed, too. The good news is that in my unaided HA ear; the hearing level is the same. :) She didn’t test me on anything else. No words or sentences.

I told her how it’s hard for me to tell if I’m hearing the high pitches and she said that it would be hard if I never heard them before. I told her about how I used to play on my Gramma’s organ and hit the high notes on the left and that I couldn't hear the high notes on last six keys, but Gramma’s dog would be howling, “OOOOooooOOOOoooooo!!!” (Too bad we didn't have camcorders 30 years ago, that would have been a good "World's Funniest Video" clip to send.)

I kept having fits of laughter on the way home (poor Hubby must have thought his wife lost her mind) with the image of my Gramma's dog howling along with the organ music. (Gramma said his ears hurt, but it sure looked like he wanted to sing; he was just like a wolf howling at the moon.)

It wasn’t a really exciting map, but it’s louder and I will acclimate to that. I told her about how hard it was to tell that the volume was higher with each program, she said some people are more sensitive to volume increases, so she just made the volume increases more noticeable, but not too much. She doesn’t want to overdo it.



Yesterday, I turned off my HA and just tried to listen with the CI. I heard the phone ring!! I actually RECOGNIZED the ringing, though it's not the same sound I hear with the HA, but hey, it's progress!! Usually I hear something and the CI would just go "nuts" and I don't know what it's trying to interpret. It just goes haywire. Ding, ping-aling. What's that? Then when I see what it is, I'll listen more to make the brain recognize it better. But the phone!! It was cool!! Of course, I had to quick turn on the HA and answer the phone. Only it was a wasted effort. (Satellite TV anyone?)

So far, I'm getting clearer hollow sounds than before, not like the haywire sounds of before. :)

So now Petey and I will move on with this adjusted map and see where it takes us for the next two weeks...(I'll keep you posted on Progress Road, journey to sound.)

Updates and Another Mispronounced Word

There's really not much to report with my progress with Pete, my CI (cochlear implant). Everything still sounds robotic/mechanical and hollow. It still has that "heliumization" to the voices.

I've been using program P4 a lot lately. All the programs P1 to P4 have ADRO settings with no sensitivity yet. Each program is the same, with increased volume in each program. Today was the first I've been using the volume control to make things louder.

It's strange, really. When I first got activated (after the tone test was done-too soft, too loud, comfortable, etc), it was LOUD. Now it seems I have adjusted to the "loudness" and things are getting soft. It makes me wonder just how "LOUD" it's going to be before I have adjusted and have the right map.

I am ready for the next map next Tuesday.

To me, it's like well-baby check-ups.

In this area, after birth, babies have a two-week routine check-up, then a one month, three month, six month, nine month, and 12 month check-up. It seems that the CI (at this facility anyway) has maps scheduled like this. After the first year, then the maps should only be "tweaked" once a year.

I know, it takes time and patience. I'll look back on the adjustments and wonder how I got this far. :)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I still GOT it!! I still unknowingly mispronounce words don't seem to look hard to pronounce. Leave it to me, I'm a pro at it. :)

Another example:

Flare and I were talking about school and one of the teacher’s (or was it a student?) uptightness. I said something about how people can be anal about things. She laughs at me.



Me: What?



Flare: Mom, it’s ay-nal.



Me: An-al.



Flare, laughing some more: No. Not an-al. Ay-nal.



Me: Oh, ay-nal. (I’ve never really heard anyone say the word before. I’ve always read it that way.)



Flare nods.



Me: Oh, so that means an-us is really ay-nus?



Flare: I can’t believe I’m having this conversation with my mother!!

LOL. I'm terrible. Well, I had to be sure that it was pronounced right, too....

And Life Goes On...

Glitter Graphics

The past two weeks has been a whirlwind of activities besides the CI activation.

The girls had back-to-school orientations and shopping to do. We covered the supplies they needed. I got extra looseleaf/filler paper because they always use that up during the year and it’s nice to have that on hand rather than to run to the store for more (i.e., plan to get a ride or get Hubby to pick some up).

I made plans to get an interpreter for both orientations. Sometimes it’s nice not to have to work so hard to listen. I didn’t have the CI activated yet. I did feel a little funny, but most of the parents and the teachers all knew I was deaf. Angel was uncomfortable with my talking hands and didn’t want me to sign. I had to talk to her about it later (at home). I didn’t want to create a scene. The next night was Flare’s freshmen orientation and Angel did not bother me when I signed, but kept bugging me about how thirsty she was. Drove me nuts. LOL. The girl would make a great salesperson-very PERSISTENT!!

It was my first time in our new church. All the parents had ot gather in the church to hear the principal talk about the rules of the school. The kids never had lockers before so they had a few rules about that (no stickers or tapes) and only CLEAN gym shoes allowed on the new gym floor. The new church was very spacious and high-ceilinged. It was a tad too dark/shadowy for me, but the lighting was better overall (compared to the old church). Maybe it was just because it was in the evening and the sun was starting to set, too. The ceilings are wood-toned while the old church had white ceilings.

I got to meet Angel’s new teacher. She’s a few years out of college. It seems like all the professionals (dentists, doctors, audies, etc) I meet are getting younger and younger. (Makes me feel old. LOL). We scheduled a time for her to meet us at our house. I had a choice of scheduling it at the school or my house, but it was easier for me to just have the teacher meet at my house so I didn’t have to worry about transportation.

Flare’s orientation was confusing. The freshmen had some kind of a mock school day where they went to each class for ten minutes each. The parents had different 10 minute sessions, such as discussions about athletics, academics, and some kind of parent watch thing where any after school party must be monitored and a list of names can be used to call other parents about parties and such (parent network), discipline, and public relations.. I didn’t see Flare until the end. It was kind of frustrating because they split up the freshmen and the parents. Oh well. I would have been lost at sea if I didn’t have the interpreter there. We did have room numbers to find for each session, but I wanted to meet up with Flare again. Flare's homeroom teacher visited our home, too. He chatted with her before the meeting at the orientation started.

The girls are settled in at school now. I’m sure it’s pretty much a routine thing for them. I get them up in the morning (sometimes three times!!) before school. Hubby takes Angel to school and she gets a ride home from one of the parents. Flare rides her bike to school with two other neighbor boys. When it gets colder out, Hubby will take her to school, too.

As far as updates with the CI (cochlear implant), I don’t have new things to report. I don’t notice much with my hearing aid (HA) on, but when I turn it off once in a while, I’ll try to listen for things. I heard the clock ticking. It was muted and high-pitched, but I knew it was the clock. Voices are becoming quite ducky (Daffy Duck). I try to muddle through the “Heliumite” language, I can see the kids’ mouths move, but it isn’t clear sound yet. For now, they make great "heliumoids." It still buzzes and sounds like my hearing aid whistling. I’ve been using P2 more now. P1 seems too soft. The programs that are set on the CI aren’t draining the battery so much. I can put a recharged battery in at 6 in the morning and take it off at 10:30 at night and there’s still juice in it yet. I did try P3. The volume is very subtle and it’s hard to really notice the difference in volume. If I use P4 long enough, I feel a funny “spark” or electric shock (I am not sure how to describe it). It’s uncomfortable.

Yesterday we took a 30-minute trip out of town to pick up half a pig Hubby ordered. It was a nice drive. (It was hot yesterday!!) Since I always used to take this route to work, I couldn’t believe how many wind turbines have been put up in the last four years. It was weird seeing them scattered all over. It was the first time I’ve seen so many of them in one area, but they were unusually immobile. The big thee-bladed propellers didn't move at all.

Then, this morning, Hubby dropped us off at church. It was a little weird for me. It’s new. I am so used to having two rows of pews and now it’s four rows (or is it five?). The pews are arranged in a kind of an arc. Different. If you turn around and look at the top wall, you can see the huge organ pipes. They still haven’t gotten all the stained glass from the old church yet so there are a few clear panes of glass in the windows waiting to be replaced.

It still has a “new” smell in the walls and carpeting.

There are no curbs to the church. I kept looking for one so I can make a step, but it was all ramped-like. That’s good for me because then I don’t have to look for the curb. :)

Have a great Labor weekend, all!!

HUGS.

Oh, before I forget, Flare has been showing me her potential for poetic "flair." She's shown me about four poems that she wrote. Hmm. wonder where she gets that from?.....;)

Updates and CI Moments

All day Monday was really no change from that whistling, motorized whine I got from the CI (Pete).

Tuesday I tried to turn off my hearing aid for a while just to see if I could sort out anything.

CI Moment: I took a sip from my cup and set it down. I heard a mechanical “clunk” as I set it down. And later on, towards the evening, I tried it again. I clapped my hand. I could hear the sound from the clap, but it was not clear. Then I could hear a sort of a difference in the underwater buzzing drill when the kids started talking. I couldn’t hear what they said, but the buzzing whine was different. And I thought I could almost detect some "heliumization" in their voices. (Did I make it to Toon Town yet? LOL)

Last night I plugged in the battery recharger (pictures below). I have two batteries with the starter kit, though I could separately purchase more on my own and maybe insurance might cover cochlear implant items under durable medical equipment. I hope they do. The rechargeable batteries cost just under $200 apiece. (Yes, it’s expensive being deaf.) My recharger can hold four batteries at one time. They last about 10-12 hours. I do have disposable batteries and they can last about three days. But the length of time really depends on how much power my map (the program that the audie sets my CI on) uses. Some maps use more power so it drains the battery faster. Right now my map is set at a low setting, so it shouldn't be draining so fast.

I also set up the Dry and Store (pictures below). This has a special brick inside of it that helps take the moisture out of the CI. The audie said that I could also put my hearing aid in it. I have to take the batteries out, though. It’s really like a dehumidifier for the hearing devices.

Today: I looked at the calendar for some reason and noticed that I had an appointment today. Good thing I looked. I forgot all about it. I guess the CI and the kids’ school routine takes precedence here.

I turned the CI on and felt around for the gravitational pull from my head. (Dare I consider my head like a planet. I wonder if I can cause the tide to come in and out? Just kidding.) Once I heard that familiar motorized noise, I knew the magnet found the internal magnet in my head. Two things I want to say: One, I don’t miss the constant slimy wetness from the earmold from the hearing aid (HA). When the earmold is in the ear all day, it gets damp/sweaty; it is just something we have to deal with when we wear HAs.. I still have that with my other ear, so I guess I’ll have to deal with it. Two, the processor is a lot bigger than my hearing aid and though it feels lighter, by the end of the day I feel the weight and the tips of my ears get sore.

I noticed that if I put my hair up, the magnet holds better. If I have my hair down (I have THICK hair) it doesn’t stay on very well. I have to dig around, moving hair out of the magnetic area. When I lay down, the magnet slips. So this is something I’ll bring up at the next mapping appointment. A magnet that is too strong could irritate the skin, though.

Just now, I find that I have another CI moment. It’s not clear, but I can hear the clacking of the keys as I type. It sounds high-pitched, kind of echo-y. If you have ever heard the TTY (teletypewriter for the deaf), that’s what the sound is similar to, but still distorted. It is still different than what I hear with my hearing aid.

So sounds are starting to sort out. Again, I still get that buzzing motor sound, but it’s getting better. :)

Most of the time, it’s a shrill whistling sound, then I get a lower buzzing sound that changes as a sound is made. I can’t make sense of that sound unless I knew where it came from and what it was. It doesn’t; sound the same as the sound I hear with my HA in the other ear, though.

I forgot to mention this: I did not get a word recognition test when I was getting activated. The audie could just tell that I would not hear anything.


Below I added some pixtures of the items so you can get a visual idea of what I was talking about.

This is the Dry and Store (closed)

This is the Dry and Store (opened, with a Dry Brik inside)

This is the Freedom processor with the cable and coil and magnet.

The internal implant and electrodes are shown here, too, but this just shows how the magnet connects to the coil/cable and processor.

Click diagram above to bigify.

This is the batteries that can be put into the battery holder below.

Battery Holder (Can be used instead of rechargeables)

Snaps into the bottom of the processor. Three batteries are used at a time.

Battery Charger (plug not shown)



Rechargeable batteries

(Snaps into the bottom of the processor or in the slots for the charger)

Have a great day. HUGs.

Sources of pictures: Cochlear Americas and other distributers. If pictures are clicked, the web address should show where they come from.

The First Day We Met

Glitter Graphics

From the moment we met, I felt this instant attraction to Pete. I was drawn to his magnetic personality. We butted heads almost immediately. We aren’t on the same level yet. He sounds funny right now, but, you know, every relationship takes time...

Meet Pete, my Cochlear Implant. That’s his name. Why? I was thinking about rabbit ears and thought about Peter Cottontail. Why not name the CI Pete?

Maybe some day, Petey will have a brother if I ever get a second implant…and his name will be….Repeat.

This morning was hectic to say the least. The girls had to get ready for their first day of school. I was shook awake by my Sonic Boom alarm clock at 5 a.m. I knew that it was the best time for me to jump into the shower. The girls might take up too much time later.

We still made it on time. In fact, we waited 10 minutes past the appointment time.

The audie asked if I had questions and how the recovery from the surgery went.

The behind the ear (BTE) processor was surprisingly lighter than it looked. I had no idea how the magnet would feel. I hardly felt it.

The first thing she said when the audie looked at her computer was “The internal implant looks good.” I should have asked to see what that looked like.

Soon the audie was clicking buttons (I swear that computer is really a piano. Each key must have a certain sound.) I was asked if they were soft, comfortable, loud, too loud, etc. It was a lot like the tone test (beeps that had varying degrees of pitches).

Then she said she was gong to turn on Pete. (This must be the "live" moment.) I heard this high-pitched noise that sounded like a hearing aid constantly whistling n my ear. (Aww, Petey was whispering sweet nothings in my ear…) Only it was awful. Annoying even. I need to get the brain adjusted to Pete’s voice. Right now it still sounds high-pitched, but more like there’s a fan or air conditioner going (only we aren’t running the fan or air conditioner).

The first thing I said was, “It sounds AWFUL.” I chuckled, only mildly disappointed. I kept my expectations low. I knew everyone’s activation experience is going to be different. I didn’t get any heliumized voices that sound like Minnie Mouse. (And I was planning on titling this post “Operation Alvination” in honor of Alvin the Chipmunk. LOL. Oh, well. It's okay. Then I said, “It almost sounds like a female Darth Vader.” (I think I got a chuckle from Hubby for that comment.)

The audie kept the programs set to a softer sound. All the programs are set on ADRO (which means every day sounds) and each program (P 1 through P 4) are just louder at each level. So when the sounds become softer and I think I can handle it being louder, then I’ll switch. She says it was better than having me get discouraged and not wear it. (I do have a volume control on it, too, so I can turn it up that way.)

I’m going to give the brain time. (And I can wear it with my hearing aid in my other ear.) Thank goodness for that because I wouldn’t recognize any sounds at this point. Karen mentioned a “chain saw” noise and I think I know what she’s talking about. It is a grating noise. That’s all I am getting right now. A constant motor sound. Soon, when the brain adjusts, those motorized sounds should morph into recognizable sounds. (We'll get there, Karen.) :)

Then, INFORMATION OVERLOAD!!...in a different context.

I was shown all my loot, the goodies. All the accessories and components that came with the Cochlear Freedom kit. Two processors. Battery recharger. Batteries. (Both disposable and rechargeable. Dry and Store kit to keep the processor dehumidifed overnight. It’s mind boggling. I want to watch the DVD that came with it. It’s closed captioned, though I am not surprised. After all, it is something a deaf person would be watching, right? I need to familiarize myself with everything.

The whole activation took about one and a half hours.

Again, baby steps. I didn’t expect to understand speech right away. The auditory nerve is waking up again after about 10-15 years. A wrinkle in time...hey, Rip Van Winkle, no that was 20 years...okay, back to our regularly scheduled programing...(my thoughts always trail off like that...had to show a part of my personality here that you would see in person, because I could always edit my thoughts when I write...)

Angel will have some reading assignments for homework to do so I’ll have plenty of listening practice. I'll look into children's books and audio tapes I can follow along. And I will devote some private time with Petey (ooh la la-eyebrows raising up and down) without my HA for additional practice.

Patience is key. I have plenty of that. Tomorrow’s another day….

Thanks to all for your encouragement and support. If it weren’t for all of us sharing our experiences, I don’t even know if I would be where I am right now if I didn’t compare and share our CI journeys. . . thank you. :) HUGS.

BTW, we didn't take pictures or get a video of it. But I will get a pix of all my Freedom components and one of me wearing Petey. :)

Pre-Activation Jitters

glitter-graphics.com

In the back of my mind where I keep a drawer full of anxieties and “what if”s,” I try to stuff some of my fears back into it.

I don’t know what to expect for the re-birth of my ear. Many questions flit through my mind.

Will I hear beeps?

Will it be aggravating?

Will voices sound “heliumized”? Will I feel like I am walking around in Toon Town? Hi, Daffy. Hi, Alvin. Hi, Minnie Mouse.

Will it be intolerable?

Will it work?

How long will it take to adjust to sounds and recognize them?

Am I going to be able to wear my hearing aid (HA) in my other ear or will the audie recommend that I don’t?

Which is best? With the HA in the other ear or without?

Every audie is different, too. Some audies think if you don’t wear the HA or even the first CI in the other ear, the new implantee will force the brain to learn to hear in the reborn ear. Some think that it would blend together somehow.

Only time will answer my questions.

Every CIer who gets turned on, hooked up, booted, or activated has a different or similar experience.

Monday is coming up fast. August 25 at 9:00 a.m. is the day of the Rebirth of my left ear.

I am so-so about it right now. I just won’t dwell on it so much and get myself worked up about the what if's. I have moments of panic, dread, nervousness, and, yes, cautious excitement. I say CAUTIOUS because I want to keep my expectations low. My ear has been deaf for 10-15 years. I can’t expect the brain to adjust to the sounds overnight. It will take time.

Legally Deaf

Badge

When I was growing up, I used to always say that I am hard-of-hearing (HOH) or just said I didn’t hear that well or had a hearing problem. I didn’t think of myself as “deaf.” I had classmates who were deaf and I knew I could hear better than they could. To me, “deaf” meant not being able to hear a thing. Nada, zip, zilch.

I had a really good friend who was Deaf (capital D-means part of the Deaf Culture). She did ASL and the whole bit. She spoke pretty well, I thought. She did have some hearing and called herself HOH, too, but couldn't talk on the phone that well. We lost touch when she got divorced and moved. We even worked together for a few years until her divorce.

Lately, though not consistently, I just cut to the chase and say, “I’m deaf.” I can’t really hear anything in my implanted ear. And before it was implanted, I didn’t get any use out of it. I heard very few loud sounds if they were low enough, but if you talked into my pre-implanted ear, with or without my hearing aid (HA) in it, I would not hear you.

By the same token, I know that I will still be deaf in my implanted ear when I take the CI off.

With the HA in my better ear, I can hear, but I do not have good hearing with it. I am “deaf” without my HA. I wouldn’t hear you talk into my ear, but with my HA on, I would hear you and maybe get a few words, but I won’t get everything. I even amaze myself if I can get through a conversation without getting a repeat more than three times.

So, out of habit, I seem to go back and forth with “I am deaf” to “I am HOH” or “severely HOH.” I feel like I am lying if I say, “I’m deaf” even though without my HA on in my better ear, I can’t hear.anything but loud noises. It's hard to label myself as "deaf" at times.


I am going to confuse myself once my brain gets trained to hear with the CI. Am I deaf or HOH?

When I talk about my vision loss, I tell people I am legally blind or that I don't see that well or even "I have tunnel vision."

I have less than 20 degrees vision. There's a term for it: Legally blind. Seems simple enough.


So, is there a definition for “legally deaf”? It would be so much easier to explain that instead of trying to explain “severely HOH" in one ear and deaf in the other.