Experiences with my daughter.

[Cloggy]

Cloggy, Are you force her to wear CI at all time?

I don't have to. It's the first things she asks for when she wakes up.
She wakes up early and can play for hours without her CI on. But when she's amongst us and the kids, she wants it on.
Even when she was angry she wants to have it on. I remember that she got angry and started crying on the floor. When the CI fell off, she put it back on.

 

[Cloggy]

Very moving.
My girls both have HA. They are very fluent in ASL as well.
Too bad we didn't live closer. I'd love for them to get together.
How old is your daughter? Mine are 8, 6 and 3 1/2 (4 in Aug).

Yeh, it's great to see her interact with deaf children in the daycare/kindergarten. I love seeing children sign.

 

[Foxrac]

I don't have to. It's the first things she asks for when she wakes up.
She wakes up early and can play for hours without her CI on. But when she's amongst us and the kids, she wants it on.
Even when she was angry she wants to have it on. I remember that she got angry and started crying on the floor. When the CI fell off, she put it back on.

wow, she has alot of responsible, unlike little American kids.

 

[Cheri]

Cloggy,

Cute daughter by the way, I have some questions, How come she wears two? instead of one? Those shown on her head, does she remove those if showering or what? When you stated that she puts it back on when it falls off, She enjoyed her CI, that doesn't mean she enjoys it, Hearing aids does the same as well. How long of period of time before you consider giving her cochlear Implants, when you first noticed that hearing aids weren't benefiting her during the year of 2003 to 2004?

 

[Cloggy]

Cloggy,

Cute daughter by the way, I have some questions, How come she wears two? instead of one? Those shown on her head, does she remove those if showering or what? When you stated that she puts it back on when it falls off, She enjoyed her CI, that doesn't mean she enjoys it, Hearing aids does the same as well. How long of period of time before you consider giving her cochlear Implants, when you first noticed that hearing aids weren't benefiting her during the year of 2003 to 2004?

She wears two because she has them on both sides. Two CI's are giving her better understanding in noisy environment and will give her sense of where the sound comes from. This we found out lately when one of her BTE's was broken. She had trouble in noisy environment and her sense of direction was based on experience, knowing where the sound should come from
In addition it was great that she had two, because now she could still hear. Had she had only 1, then she would have been deaf for 1 to 2 weeks.

In the shower she takes them off and she's deaf, so we use sign. But she also reads lips. She almost fooled us when we were testing if the CI was working. USing standard words to test it, she repeated the words perfectly.... until we covered our mouth!

Regarding considering CI: We applied for it while we tried HA's HAd she benefitted from HA's we just would have stopped the request for CI.
BUt she never reacted to sounds in the 1½ years she used them. And she only wanted to wear them in the deaf-kindergarten. Not at home.

Not really sure by what you mean with "When you stated that she puts it back on when it falls off, She enjoyed her CI, that doesn't mean she enjoys it, Hearing aids does the same as well. "
My main indication that she enjoys the CI is that she wants it after she wakes up. Plus, she wants it back on when it falls off.
I'm not sure how HA's come into this picture. The HA's were probably more uncomfortable because of the molds in her ear. Small ears, growing etc didn't make the situation easier. She went through 3 molds I thinks... and lost a few due to her disassembling them in the car....

So I can really say she likes CI, she likes to hear. She couldn't hear with HA's

 

[Cheri]

In the shower she takes them off and she's deaf, so we use sign. But she also reads lips. She almost fooled us when we were testing if the CI was working. USing standard words to test it, she repeated the words perfectly.... until we covered our mouth!

I'm aware that she is deaf, when Ci is taken off, but does it hurt her when you take it off her head? Can you be able to describe how exactly you take it off? Do you have to turn it to come off, Or just snapped it off?


Thanks for answering the rest of the questions.

 

[Cloggy]

I'm aware that she is deaf, when Ci is taken off, but does it hurt her when you take it off her head? Can you be able to describe how exactly you take it off? Do you have to turn it to come off, Or just snapped it off?


Thanks for answering the rest of the questions.

No, it's attatched with a magnet, so it just snaps on. Less powerfull than you probably use to stick notes on your fridge. (There are different strengths for these magnets)
So to take it off, you just pull or drag it. When the magnet is not strong enough, it falls off easily - like with the fridge when the magnets are not powerfull enough.

It's actually funny to see her put it on. She hardly realises it. It's just - no sound, putting the piece back.
But sometimes she's in her own world and just forgets to put it back - or doesn't realise it because she can still hear with the other one.
Other times she comes to us in distress because she can't reach it (when they are on her back) and really wants them on. In that case she has her brother and sister and use to help her.

Glad you asked about it.

 

[Cheri]

That's interesting, I'm learning something new, And when you take it off, what's on her head after that?

 

[neecy]

I'm aware that she is deaf, when Ci is taken off, but does it hurt her when you take it off her head? Can you be able to describe how exactly you take it off? Do you have to turn it to come off, Or just snapped it off?


Thanks for answering the rest of the questions.

I'd like to add my experience here - it doesn't hurt at all but its a bit disorienting when my processor falls off, or I remove it. Even in the quietest room there's sound - my breathing, maybe the computer fan running, etc or outside there's always some sound...when it fall off it goes to *NOTHING* and that's really noticable now. When it happens I hear what is akin to a high-pitched whine (like from a teakettle) for about 30 seconds then it goes away - probably from the auditory nerve going from high-stimulation to nothing, and saying "HEY BRING THAT BACK!!!" *grin*

 

[Cloggy]

That's interesting, I'm learning something new, And when you take it off, what's on her head after that?

Nothing. Just skin. Have a look at the pitctures in the start of the topic. There's a picture a couple of weeks after the operation. (here) You only see the scar of the incision. That is even gone now.
You can feel the implant, but you cannot see it.

 

[R2D2]

What sort of circumstances make the processor fall off? Brushing against a wall?

 

[R2D2]

Nothing. Just skin. Have a look at the pitctures in the start of the topic. There's a picture a couple of weeks after the operation. (here) You only see the scar of the incision. That is even gone now.
You can feel the implant, but you cannot see it.

So can most people feel the implant under the skin even after the incision has healed up? I was just wondering that the other day!

 

[Cheri]

Nothing. Just skin. Have a look at the pitctures in the start of the topic. There's a picture a couple of weeks after the operation. (here) You only see the scar of the incision. That is even gone now.
You can feel the implant, but you cannot see it.

So it is right by the scar? You say they can feel the implant not seeing it, Does she sleeps allright? Does it bother her when she lay down on her pillow?

 

[Cloggy]

What sort of circumstances make the processor fall off? Brushing against a wall?

Playing in general. She's not thinking about them when she plays.
Most children will have them hanging at the ear, but with these small ears, and the BTE being quite thick (for a child) they don't hangs as well. We tried but then we have to put the BTE - not the coil - back every 5 minutes.
So she wears them on the shoulders and that goes well. Even when she wears a coat and the BTE's are covered, she hears well.
So, this way there's nothing hanging at her ear...

She hears from her shoulder Actually, the additional distance between the BTE's at teh shoulder vs at the ears helps with locating the sound...

Neecy... you should try that!

 

[neecy]

So can most people feel the implant under the skin even after the incision has healed up? I was just wondering that the other day!

if I rub my fingers over the implant area, I can feel a slight "bump" but that's all. My hair has completely regrown over the incision spot.

There's no discomfort - if I lie down on a pillow or even a hard surface like a floor I can't tell its there.

To better illustrate this - I just turned my webcam on and snapped these 4 pictures - while the incision for the implantation itself was directly behind the ear, the processor itself was pushed higher up on the skull (where you see my transmitter coil attached).

You can see just a little bit of the wire loop from the BTE leading to the transmiter coil here - I had my hair cut last week - it was getting too thick and the coil was popping off - it was much longer in the back and you couldn't see it before.

pulling my hair back a bit you can see the BTE...

 

[Cloggy]

So it is right by the scar? You say they can feel the implant not seeing it, Does she sleeps allright? Does it bother her when she lay down on her pillow?

It's at the top of the scar. Under there there's a magnet (where the magnet of the coil can be attatched) and an antenna. The information is transferred through the skin. Goto this page and have a look at the second picture...

 

[Cheri]

It's at the top of the scar. Under there there's a magnet (where the magnet of the coil can be attatched) and an antenna. The information is transferred through the skin. Goto this page and have a look at the second picture...

Ahh I see it, It's under the skin, So you'll feel a bump? You didn't answered the rest of my question yet about sleeping situation.

 

[neecy]

.

She hears from her shoulder Actually, the additional distance between the BTE's at teh shoulder vs at the ears helps with locating the sound...

Neecy... you should try that!

I will have to get a longer wire to try that - mine's too short for my BTE to reach my shoulders (as you can see in the pictures I put in my post above). It sounds interesting though!

 

[Angel]

Nothing. Just skin. Have a look at the pitctures in the start of the topic. There's a picture a couple of weeks after the operation. (here) You only see the scar of the incision. That is even gone now.
You can feel the implant, but you cannot see it.

Please don't get me wrong here but when I look at her scar, and seeing how little she is, it just breaks my heart even I know she won't realized it there

 

[neecy]

Cloggy - I hope you don't mind me having added pictures of my CI - didn't mean to hijack your thread - I just hoped it would clarify exaclty what it "looks like" when the processor is attached. (and where).