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Unread 04-29-2006, 04:27 AM   #1
Cloggy
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Experiences with my daughter.

In order to prevent putting this information in a topic and thereby getting off-topic... I thought I would share some information here.

Our daughter was born in august 2002 and was found to be profound deaf in june 2003. She wore HA's - to no effect - until she had bi-lateral CI. These were activated in november 2004.

For the interested: here are some pictures of her, most from just after the operation and some 2 weeks after that , when the wound had healed.

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...

The first posts are from some time ago. I just wanted to share these as well. The last one happened today, this morning.
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Unread 04-29-2006, 04:27 AM   #2
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Just wanted to give an update on our little angel, 2-3/4 years old and using her Ci (bi-lateral) now for 6 months.

It's going great. She's talking away to herself and her dolls, to us. Not that we got to a point that we want to shut her up, but then again, I don't think that time will come.

Today we went to a concert where our son, 8 years, would be singing. Lotte got her own chair and enjoyed it.
In the beginning a piece of Astero Piazzolla, beautifull South American music. (I can recommend this) and she was totally concentrated. Indicating that there was a man playing, and a women. Not sure if she indicated who made the sound, I don't think so.
But these are the special moments, when you sit there with your deaf child and see her concentrated on listning. It's magic.
Other beautiful moments is when she hears music and dances. She has a sister a rolemodel, so copying that goes well. But now she starts by herself. Hearing alarms, recognising the telephone and so on. She tries hard to repeat sounds and manages well at times. She has a great speech therapists who - I think - has her as sort of a private project. (First girl in Norway operated on both sides at the same time, plus she will have to learn Norwegian AND dutch AND continue with sign..

She enjoy's the CI. Put's it back when they fall off. At least when she notices. She's not at a stage where she misses sound. She can go on with both CI's loose.
FYI, instead of a microphones behind the ears in combination with two bodyworn processor, we opted for 2 BTE's that she carries on her shoulders. It's working really well.
Next mapping she will get the latest BTE's of Cochlear. She's allready got the latest electrode implanted but used the old type BTE.
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Unread 04-29-2006, 04:29 AM   #3
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Hi all,

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, 50minutes plane, 30minutes train, 15 minutes taxi, quite a long time for a three-year old.)
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Unread 04-29-2006, 04:29 AM   #4
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Hi guys and girls,

Another update on our CI-borg.
In july my wife went with the kids to The Netherlands, I joined a week later - someone had to work - and we spend two weeks with good friends in a house in the south of Holland. (OK, not Holland, The Netherlands...)

For Lotte this meant 3 to 4 weeks with only Dutch language around her. Most people don't know sign, so she was submerged in language.
She did great. Learning to say all the names and much more.
I think she made a mental change as well. I really clicked now. She sees the connection between words and actions, objects etc. It's great to watch.

One thing to mention.. she whispers. It's so great that when we start whispering to her, she lowers her voice as well. And of course, being the sceptic engineer I put my hand in front of my mouth just to make sure she wouldn't read my lips, but no problem, she understood it all. It's such a "miracle" and we're with her on the stage witnessing it. WOW.

A couple of days ago, I thought that whispering might be something unknow to deaf people. How is that. Obviously, when becoming deaf at later age, whispering is known, but how is that for HOH or deaf people? Whispering to someone with a HA seems pointless to me.
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Unread 04-29-2006, 04:32 AM   #5
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This morning, my 2 daughters were playing on the floor above. (1 deaf, 1 hearing). When my wife had finishe making the table for breakfast, she told to them "Breakfast is ready!". Then she heared Lotte say to her sisten.... "come.. breakfast ready".

Isn't that great, the deaf child passing on the message to the hearing one!
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Unread 04-29-2006, 01:19 PM   #6
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Aww your daughter is such a cutie, and looking at the pictures are such a heart warming feelings, I'm impressed she is doing so well with the use of her implant and glad to see your wife is working with her by signing :smiling:
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Unread 04-29-2006, 01:51 PM   #7
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Quote:
Originally Posted by Cloggy
This morning, my 2 daughters were playing on the floor above. (1 deaf, 1 hearing). When my wife had finishe making the table for breakfast, she told to them "Breakfast is ready!". Then she heared Lotte say to her sisten.... "come.. breakfast ready".

Isn't that great, the deaf child passing on the message to the hearing one!
I got SHIVERS when I read that!!!! That is just so amazing! I hope you keep sharing your experiences here. I'm so happy for Lotte! Does she have a favorite type of music or a favorite singer?
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Unread 04-29-2006, 03:09 PM   #8
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Cloggy, Are you force her to wear CI at all time?
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Unread 04-29-2006, 03:17 PM   #9
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Quote:
Originally Posted by TrippLA
Cloggy, Are you force her to wear CI at all time?
Yeah, are you, Cloggy???
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Unread 04-29-2006, 03:21 PM   #10
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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).
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Unread 04-29-2006, 03:26 PM   #11
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Quote:
Originally Posted by TrippLA
Cloggy, Are you force her to wear CI at all time?
This is not the time or place for ignorance or attacks. Grow up! Stick to the topic for crying out loud
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Unread 04-29-2006, 03:48 PM   #12
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Cloggy wrote very clearly:

Quote:
She enjoy's the CI. Put's it back when they fall off.
That means- when his daughter realizes her CI has fallen off, SHE put it BACK herself.

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Unread 04-29-2006, 04:14 PM   #13
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TrippLA and gnulinuxman,

It's Cloggy's choose to do with his own daughter because it's not your kid also. But he said that his daughter enjoy to having the CI so be happy for his daugther and his family and him too. So, shush abt it next time, he didn't force his own daughter that's all.
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Unread 04-29-2006, 05:03 PM   #14
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Cloggy,

Your daughter is adorable! While I have mixed feelings regarding implanting children, it seems as though you and you wife made a wise decision in your situation. I'm think it's great that she's getting so much benefit from the CIs, but that you're using sign as well.
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Unread 04-29-2006, 06:55 PM   #15
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Thanks for sharing your story Cloggy, I appreciate that it must have taken guts to do this considering that there are a few here who have very strong feelings about children being implanted. You daughter is absolutely adorable and there is no question that she looks happy, secure and loved in the photos.

By the way it is interesting reading the Dutch words - it looks like it has many words in common with English and German to me. So your daughter will end up knowing 3 languages then by the time she grows up? Maybe 4 if she learns English as well! That's fantastic.
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Unread 04-29-2006, 07:41 PM   #16
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Quote:
Originally Posted by neecy
This is not the time or place for ignorance or attacks. Grow up! Stick to the topic for crying out loud
What? I'm not argue against CI and I just want intresting about new experience for parent with children that who has CI. I know that some of kids are just enjoy it but I just have some questions to Cloggy about his personal with her daughter, that all.

Sweetheart, read above and I don't know what are you talking about Cloggy.

btw, Cloggy... your daughter is cute.
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Unread 04-29-2006, 09:12 PM   #17
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Cloggy,
Thank you for sharing your story about your daughter with us. It shall be fascinating to see how her language development flourish. She is quite fortunate to be growing up in a multilingual environment. Two languages (and counting) are better than one, and even one is better than none. I wish you and your family the best of luck!
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Unread 04-29-2006, 09:38 PM   #18
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Quote:
If tired of fall down then just put tape on it
But the girls tend to have long hair- won't it hurt to pull the tape off? Other than that it's pretty good idea!
maybe there is something better - maybe... elastic headband to keep it in place??


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Unread 04-29-2006, 09:46 PM   #19
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Quote:
Originally Posted by Audiofuzzy
But the girls tend to have long hair- won't it hurt to pull the tape off? Other than that it's pretty good idea!
maybe there is something better - maybe... elastic headband to keep it in place??


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I was thinking a stretchy sweatband might work to hold the transmitter coils
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Unread 04-30-2006, 12:20 AM   #20
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Quote:
Originally Posted by neecy
I got SHIVERS when I read that!!!! That is just so amazing! I hope you keep sharing your experiences here. I'm so happy for Lotte! Does she have a favorite type of music or a favorite singer?
Only her mother when she goes to bed.
There's about 5 songs she has to go through, and Lotte will sing along. Then, with the last sone she'll take off the CI and give it to my wife /or me), asks for a kiss and turns around to goto sleep.

We haven't experimented with music a lot, but she is listning to it when we sit down with her and play classical music..
My wife is a professional flute-player, so there's plenty of music in the house.
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Unread 04-30-2006, 12:23 AM   #21
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Quote:
Originally Posted by TrippLA
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.
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Unread 04-30-2006, 12:25 AM   #22
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Quote:
Originally Posted by Heart2Sign
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.
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Unread 04-30-2006, 12:29 AM   #23
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Quote:
Originally Posted by Cloggy
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.
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Unread 04-30-2006, 09:46 PM   #24
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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?
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Unread 05-01-2006, 01:20 AM   #25
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Quote:
Originally Posted by 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?
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 1 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
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Unread 05-01-2006, 01:28 AM   #26
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Quote:
Originally Posted by Cloggy
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.
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Unread 05-01-2006, 01:53 AM   #27
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Quote:
Originally Posted by Cheri
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.
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Unread 05-01-2006, 01:57 AM   #28
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That's interesting, I'm learning something new, And when you take it off, what's on her head after that?
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Unread 05-01-2006, 01:58 AM   #29
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Quote:
Originally Posted by Cheri
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*
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Unread 05-01-2006, 02:01 AM   #30
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Quote:
Originally Posted by Cheri
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.
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