Thursday, 15 June 2006


Update regarding Lotte,

Yesterday we - my wife and me - went to Oslo to get a new mapping for Lotte. The new processors were not yet available so that was postponed. Too high demand and not enough new processors. So we'll continue with the "old" ones.

I asked then to go up on the power. Actually, Lotte never has felt any discomfort so I told them to feel free to "turn up the volume".
Went quite a bit higher than before and one of the programmes was set for listning to music. That went fine. No discomfort at all. (I decided no to push them to go higher...)
Only when she had both CI's activated simultaniously she reacted strongly. More surprise than discomfort but the technician wanted to go just a little lower.

After the first mapping, which took 1-1/2 hours, we went out and it seemed that she talked more clearly, repeated words more accurately. Kind of strange after such a short time, so we regarded it as luck. But there were some other words that were more clearly. It's amazing.
On a test they did, copied from German - English tests she allready scored 32 out of 35. Not sure if it is MAIS or ACS-R or simular. (Does anyone have those tests available so I can try them?)

The second mapping went fine as well. No big changes. The "music" program was set as "loud" as the "speech" program. (It was set a bit lower initially)

She was great to travel with. Quite a change from 3 months ago when she had trouble sitting still. (Who can blame her, 50 minutes plane, 30 minutes train, 15 minutes taxi, quite a long time for a three-year old.)


Here some where she's signing with my wife. Note the BTE's in little bags on the back. She has them on both sides.

Here's another view of the bags with BTE's on her schoulders...



R2D2 (AllDeaf) said...

You mean a little bag? Is the bag enclosed? Wouldn't it jump around a bit when doing some vigourous activity? Now there's an idea. I like to sew so maybe I could make a funky one? Is it possible by any chance that you could post a photo of Lotte's bodyworn bag so that I can get an idea of what it looks like?

I'll have to test it all out. It sounds like some people don't like wearing the bodyworn. I'm getting two cables of different lengths so that I can wear the shorter one if I want to without wires flapping everywhere.

The other thing is that if I buy batteries from the US I can get them half price compared to Australia. There are some companies that are happy to ship to Australia for quite a low postage cost $US 5.50.

Cloggy said...

Jump around vigurously... How many times does that happen?
Here are some: detail.jpg detail 2.jpg detail 3.jpg

Have a look. They attatch with a safety-pin. The flap is secured with ?felcrow? (Not sure what it is called in english)

Cloggy said...
This comment has been removed by the author.
R2D2 (AllDeaf) said...

Thanks for that! It looks like it would be easy to make and the denim one particularly looks cool.

And yes it's velcro.

Cheri (AllDeaf) said...

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?

Cheri (AllDeaf) said...

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 (AllDeaf) said...

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?

Cloggy said...

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.

Neecy (AllDaef) said...

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 said...

Answer to 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.

R2D2 (AllDeaf) said...

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

Cloggy said...

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!

Cheri (AllDeaf) said...

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?

Cheri /AllDeaf) said...

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...

Greema said...

cloggy -- from your reference to Lotte's signing to her mom when her mom didn't understand her voicing -- amazing! God obviously sent Lotte to the best set of parents -- He knows you two will make all the right decisions for that little girl!

Cloggy said...

Actually, I believe she's a very old spirit, allowed to come back one more time to this world. She picked us, we're honoured.

But regarding the signing (the sign used is "cake") she didn't use her voice at that time. She just started using CI. But you're right; when we don't understand each other we add sign. Then when she understands, we say it again.

(Some) Milestones

  • 2013-08: Grade 6
  • 2012-08: Grade 5
  • 2011-08: Grade 4
  • 2011-03: BTE's on the ear
  • 2010-08: Grade 3
  • 2009-08: Grade 2
  • 2008-08: Mainstream School (6y. old)
  • 2006-10: All-hearing Kindergarten (4y. old)
  • 2004-11-22: CI activated (27 m. old)
  • 2004-10-04: Bi-lateral CI (26 m. old)
  • 2003-08: Deaf/HOH/CI Pre-school/"DEAF" Kindergarten (12m. old)
  • 2003-07: HA's fitted (11 m. old)
  • 2003-06: Diagnosed deaf. Start sign-language (10m. old)
  • 2002-11: Suspicion loss of hearing (4 m. old)
  • 2002-08: Born - A fierce LION
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