Daughter's N6 Activation.

[Angel1989]

Will she be on summer vacation soon? Hopefully then she can spend a lot more time wearing her CI. For me, keeping a written journal helped so much. Each day I would write down the new sounds I heard. I would log how many hours I wore my CI, what problems I had etc. When I went to my Audiologist I could tell her exactly how things were going.

 

[sonocativo]

Condor, Its been awhile since I picked up the guitar BUT, I had another mapping recently on both CI and today I dug it out and strummed a few tunes... it is actually starting to sound normal again now. Some pitches sound the same, but nothing like before where it all sounded the same. I can actually hear the full chords now.

 

[Condor1970]

It's good to know you are doing better with the guitar.

I've noticed recently, my daughter has very thick hair, and the coil seems to fall her head quite easily. She has a number 3 magnet on there, and I'm wondering if I can get a higher one. Can they be purchased, or do need to have the Audie get one for her?

 

[soutthpaw]

Cochlear goes up to #6 magnet, but requires a, Dr authorization for higher power magnet or at least for a #6, I have 5's

 

[Angel1989]

It's good to know you are doing better with the guitar.

I've noticed recently, my daughter has very thick hair, and the coil seems to fall her head quite easily. She has a number 3 magnet on there, and I'm wondering if I can get a higher one. Can they be purchased, or do need to have the Audie get one for her?

Hi Condor, you probably know this but just in case, you can twist the magnet to make it closer to the scalp. I have long thick hair also but don't really have a problem with the magnet falling off and I just noticed that my magnet is only #2. Another option is to shave the underneath hair a little bit like they did for surgery which can be covered up with the rest of the hair.

I'm sure your Audi can just switch magnets for you. They just want to be careful that a stronger magnet won't cause skin irritation. Good luck.

 

[Ri Sol]

I've noticed recently, my daughter has very thick hair, and the coil seems to fall her head quite easily. She has a number 3 magnet on there, and I'm wondering if I can get a higher one. Can they be purchased, or do need to have the Audie get one for her?

same issue here, my magnet is #4, but it is the strongest magnet available at Med-El.

Shaving hair is not the solution for me, so I'm trying different options to stick it to the head(pins).

 

[sonocativo]

I have #3 and #4, I wear the 3 normally with short hair, as my hair grows out I use the #4

 

[Condor1970]

Update:

Ok, my daughter had her next mapping done today, after almost 2 months. This I believe is her 4th session.

Three good things have happened, and also one that had me feeling like a mean parent, but turned out for the better.

1. He remapped the whole thing. Virtually all of the settings needed to be changed because her nerve is getting used to it being there. He also turned up the volume again.
The result is a noticeable increase in clarity for her. Not perfect, but much better.

2. He also upgraded the magnet. She actually had a #2, and now went to a #3. It sticks much better, but not too tight to cause problems.

3. Her piano playing is really coming along. She can hear almost the entire keyboard now. She still could not hear the high notes, so the Audie activated the last 2 electrodes, and set them at a very low volume to slowly stimulate the high frequency receptors in the nerve. She immediately has noticed a difference in the high notes. This is good.


And finally. I felt like a mean parent, but for the last month she just hasn't ben wearing it nearly as much as the Audie told her she needs to. She only has been wearing it for a few hours a day, and depending mainly on her hearing aid. So, in a last ditch effort, I locked up her HA in my safe, where no 15yo teenager can't get at it. Now, she is forced to use only the CI for the next 2 months while she is on summer vacation. She gets her HA back before school starts in the fall. I thought this may have been a bit harsh, but the ENT and Audie both smiled and agreed with me. No child abuse charges pressed by CPS.

 

[drphil]

Some background to add to his daughter's current situation

 

[Condor1970]

I'll even give you all an idea of why this has perplexed me, and why I haven't made any updates on this thread for months. It's because after only a couple months of use, back in July, all of a sudden her progress seemed to stop. She was hearing "some" sounds, and her piano to a certain degree, but speech recognition just stopped getting better all of a sudden.

In fact, I thought it was because the technology sometimes doesn't always work that well, and some people just never hear very well with CI. I just thought maybe she is one of those kids that just won't get the full benefit of a CI, like most do. After talking with her every few days during the summer, always concerned, and always so happy and gracious that she got her implant, I basically accepted the fact that she may not ever be able to hear our speech to the point of being able to have a quality oral conversation. I asked her repeatedly how well it was coming along, and how long she was wearing it everyday as the doctor told her to for rehabilitation.

Well, she flat out got lazy, and lied about the whole thing. She was wearing it for less than an hour a day all summer, and not at all in school since September.

The doctor made it very clear that the nerves will not be able to read the signals and get stimulated properly with such little use. She simply will not get better, if she does not wear it. Yet, she wants to get better, and has made it clear to me and everyone else.

Then, I find out she wasted her whole summer playing on that stupid computer, and did absolutely no rehabilitation exercises, and hasn't been wearing her CI at all.

Well, now we are back on track. She is not happy I did what I did, but she understands why. She wants to be a doctor when she grows up. Well, she can live without playing on the internet, until she gets her life straightened out, and understands her obligations.

If people on here think that's abusive, then you can go stuff it.

 

[Reba]

I'm glad that you're all back on track now.

No, restricting the internet is not abusive.

Does your daughter live with you full time?

 

[Condor1970]

Reba, she's 15. Seriously? Unlike some abusive parents, this horrible father doesn't throw his children out on the streets to fend for themselves. She may be as stubborn as I am, because like you and I both arguing over this ridiculous situation, she also refuses to give up when she thinks she is right. That's why she needs that structure in her life, because she is just like me, a stubborn engineer.

And don't worry, she will get her precious cell phone back after her next Audie visit. Maybe.

 

[whatdidyousay!]

Reba, she's 15. Seriously? Unlike some abusive parents, this horrible father doesn't throw his children out on the streets to fend for themselves. She may be as stubborn as I am, because like you and I both arguing over this ridiculous situation, she also refuses to give up when she thinks she is right. That's why she needs that structure in her life, because she is just like me, a stubborn engineer.

And don't worry, she will get her precious cell phone back after her next Audie visit. Maybe.

That is not what Reba meant at all! There are kids that have divorce parents and spend times at parents house! There was no need to be so rude!

 

[Reba]

Reba, she's 15. Seriously? Unlike some abusive parents, this horrible father doesn't throw his children out on the streets to fend for themselves.

Calm down. I never said any such thing. Some parents have split custody. I don't know anything about your family make up, so I asked.

The reason I asked was because you stated that you "found out" that she was spending too much time on the internet for months. I thought maybe the reason you didn't notice that was because she was living with her mom during most of that time.

She may be as stubborn as I am, because like you and I both arguing over this ridiculous situation, she also refuses to give up when she thinks she is right. That's why she needs that structure in her life, because she is just like me, a stubborn engineer.

I'm not arguing here.

And don't worry, she will get her precious cell phone back after her next Audie visit. Maybe.

I'm not worried about her phone. I think teens should spend a lot less time on their phones.

 

[Condor1970]

Calm down. I never said any such thing. Some parents have split custody. I don't know anything about your family make up, so I asked.

The reason I asked was because you stated that you "found out" that she was spending too much time on the internet for months. I thought maybe the reason you didn't notice that was because she was living with her mom during most of that time.


I'm not arguing here.


I'm not worried about her phone. I think teens should spend a lot less time on their phones.

Reba please, I was being sarcastic when I said I was a horrible father.... understand? I was poking at the ones who... ah heck, nevermind. Koala bears. The little wink at the end should have given you some context?.

No we are a married couple, actually all living in a very happy home with 2 children (as indicated by the extreme noise level), and psychopathic cat.

What I meant about finding out she spent too much time on the internet, is because even though I was home a lot during the day (night shifts), she would tell me that she was on websites that would help with her rehab (like AngelSound, or whatever it's called). Only to find out she was lying.

Also I did in fact take the same "give your child leeway and all the love and affection possible" route espoused by the so-called brilliant minds on here, and all it did was lead to disaster. They were all WRONG before they even made their first inflammatory post attacking me. I knew she was on the internet too much, and tried with affection, over and over to get her to be more active, and to try and spend more time with friends and such. Turns out she was addicted to this stupid game website. I gave her space. That turned out to be a BAD IDEA. She constantly lied saying she was working on learning to hear again, yet her Audie finally said she hadn't even been wearing it at all. Basically, she lied all summer to me and everyone else, because she got lazy and gave up on it.

Now I found out today it really didn't have much to do with her being concerned about being different or out of place at school. She actually told my wife this while in the car on the way to the YMCA for swimming. It was more about just pure laziness. She wasn't progressing fast enough in her mind, so she gave up, and stopped wearing it, thinking it was a waste of time. She is a lot like my wife in that regard, she wants everything NOW, NOW, NOW!!!

Sometimes, in life you need work hard for things, and they don't always come easy.

Don't worry. She is wearing it all day now. And she is learning she needs to play ball. She can't win the game by sitting on the bench.

 

[Reba]

Reba please, I was being sarcastic when I said I was a horrible father.... understand? I was poking at the ones who... ah heck, nevermind. Koala bears. The little wink at the end should have given you some context?.

OK.

No we are a married couple, actually all living in a very happy home with 2 children (as indicated by the extreme noise level), and psychopathic cat.

Thank you.

What I meant about finding out she spent too much time on the internet, is because even though I was home a lot during the day (night shifts), she would tell me that she was on websites that would help with her rehab (like AngelSound, or whatever it's called). Only to find out she was lying.

Lying's not good. That's why kids can't be trusted with computers in their bedrooms. It's too much easy temptation.

Also I did in fact take the same "give your child leeway and all the love and affection possible" route espoused by the so-called brilliant minds on here, and all it did was lead to disaster. They were all WRONG before they even made their first inflammatory post attacking me. I knew she was on the internet too much, and tried with affection, over and over to get her to be more active, and to try and spend more time with friends and such. Turns out she was addicted to this stupid game website. I gave her space. That turned out to be a BAD IDEA. She constantly lied saying she was working on learning to hear again, yet her Audie finally said she hadn't even been wearing it at all. Basically, she lied all summer to me and everyone else, because she got lazy and gave up on it.

Since what you mean by trying with affection, and what others mean by that, and what I mean by that, might be all different things, I'm not commenting.

Now I found out today it really didn't have much to do with her being concerned about being different or out of place at school. She actually told my wife this while in the car on the way to the YMCA for swimming. It was more about just pure laziness. She wasn't progressing fast enough in her mind, so she gave up, and stopped wearing it, thinking it was a waste of time. She is a lot like my wife in that regard, she wants everything NOW, NOW, NOW!!!

That almost sounds more like discouragement or impatience due to unrealistic expectations more than laziness.

Sometimes, in life you need work hard for things, and they don't always come easy.

Don't worry. She is wearing it all day now. And she is learning she needs to play ball. She can't win the game by sitting on the bench.

Still, she's a young girl who needs to enjoy her youth. Working hard at something is OK as long as it doesn't become a source of resentment. If she gets benefits from the work she's more likely to keep it up, and not be one of the CI users who sticks it in a drawer once they leave home (it sometimes happens).

 

[Condor1970]

Once again, sitting on a high horse, analyzing a situation I already fully understand, and you do not. It's obvious the people on here have nothing better to do with their lives, which is why I think I most likely won't be spending much more time on this forum. I didn't spend much time on here anyway. I only cam here seeking a bit of online support for info and maybe a few ideas, but this is absolutely terrible. I wouldn't doubt if you're all Pm'ing each other, and insulting my so-called horrible parenting of my children. I'm probably right, aren't I?

The gang mentality of the group of forum members on here (which was my reference of "these people")) that have ganged up and attacked me personally is absolutely atrocious behavior. Yet even the Moderators are blaming me. Like a gaggle of old women sitting around a room gossiping all day long, and sitting on their high horse, waving their finger at everyone they don't agree with.

When I have a whole hospital full of professional doctors, nurses, chaplains and other therapists who all agree with me 100%, and only a few online forum members who obviously have had a lot of personal issues that don't, should really tell you something.

You should all be ashamed of yourselves.

Good Day.

 

[Barbaro]

Ok, after months of petitioning the insurance company to change their policy to include minors suffering from SSHL, the change was made (to my amazement), and my daughter received full coverage for her implant.

She did well, and recovered quickly. She had a few days of normal dizziness, and after 5 weeks, she was activated yesterday.

Now, on her first activation in the office, she did hear all the test beeps the computer did during its initial configuration, and she said it sounded really strange. This is a great sign, which means the nerve is working, and not severely damaged or dead. So, everything is working as expected.

When the Audi finally turned it on, she jumped like crazy with a typical jolt and teenage OMG!!! response.

It was a sensation she has never had in that ear. It almost gave her a headache, which she started getting used to quickly. He turned it up 6 steps during the appointment, and gave a her a few more programmed increases to do on her own at home with her remote.

Now, as far as sound goes.

By that evening (last night) she said she could her rumbling when we speak, but not clearly. She still can't make out any words yet. She also could not make out any pitch when playing the individual keys on her piano. Granted this is only the first day. My hope as the days go on, her speech perception will get better, and eventually will hear the piano better as well.

For today, she did not take it to school. The Audi recommended to leave it home for a few days, because the noise at school may be too much for her. Other than that, nothing else to report.

I think the problem was she watched all those YouTube videos of people hearing really well right away, and went home a bit disappointed. I keep telling her, since she has been deaf in that ear since she was an infant, it will be a long term process, and not happen overnight. Keeping fingers crossed.

You mentioned that she knew YouTube videos are a bad influence. But you have to realize sooner or later she is going to see it again and will put up the wall again. That's something that you need to maintain to discuss it with her.

Don't ever say ..."your hope..." to her. Ever. It would make her feel more discouraged and stressful more than it has to be. You could have said good work or good job instead.

You said she had lots of friends, but you also stated that she was suppose to hang out with her friends and chose to spend a lot on the computer instead. Is that contradicting, isn't it? You still didn't answer my question directly. Is she not interested in hanging out with her friends or is she avoiding them?

 

[shel90]

I got my CI activated a month ago. I went in with very very very low expectations and just want help with lipreading as hearing aids were no longer giving me the sound access I needed to lipread better due to my hearing levels dropping. It has been a month and because I had such low expectations, it has met them. If I had those high expectations and expected to be like those people on the YouTube videos, I would definitely be disappointed big time. No, I dont understand speech at all but I expected that. Some days I hear good and other days, I hear worse than I did with my hearing aids.

Thats why I HATE those YouTube videos....they dont show the real work behind the CIs. Also, some hearing people at my work and in my hubby's family had high expectations and they all think I can hear like a hearing person. When I tell them no, that I dont, they looked at me as if I was lying. No thanks to those DAMN YouTube videos and the other helicopter parents of successful CI users for blogging about their children's success with the implication that their children heard perfectly as soon as their CIs were activated and we all know that's BS on their part. At least you are honest that it takes work. I applaud you for that.

 

[drphil]

I guess it is "ironic" re: the above on some members commenting on Condor1970 orginal discussion re his daughter;s "response to her Cochlear Implant".

Perhaps if someone in the future wants to request members opinion re: Cochlear Implants/Hearing aids reread all the comments- generated here-to date.

Cheers to all