Video - Nucleus 6 - daily life.

Thanks Dan for the heads-up.
Great article in your blog..
Nucleus 6 CI Processor Uses GN ReSound Unite Hearing Aid wireless accessories

Glem det!

Glem det! - En film om å være hørselshemmet i videregående skole

HLF Briskeby Kompetansesenter

It will be a while before Lotte will be there, but 6 years passes by quickly..
Even so, It's also relevant at school right now.!
so.. posting this for her, her teachers, her friends and for those that are interested..

btw..
Audiogram with simulation of loss of different frequencies 08:05

CI from 13:30
FM equipment from 14:40
Teacher explains.. 22:40

"I am deaf when I am asleep"..

Each morning the children watch the "childrens news" from Holland.. (Jeugdjournaal)

Lotte's sister had sent in a picture regarding the weather, and it was shown in the broadcast in the evening..

So.. Lotte wants to send something to the Dutch television as well... OK.. Why don't you make a video.. Write down what you want to say, and we will tape it...

Good idea... 

Lotte starts writing, saying it out loud....... We’re listning to what she’s going to tell the Dutch viewers....

Hello.

My name is Lotte.

I am 9 years old.

I am deaf when I sleep.

I have CI so I can hear...

WOW... so that's how she sees it.. how she experiences it... 

We’ll leave it at this... no depth interview about how she feels etc.. we’ll just take this little pearl of wisdom and enjoy it..

(Video below (Dutch and Norwegian) Subtitles added.... direct link here)

Animations..

Spending too much time every time I'm searching for animations when I need to show people how a CI works... Or show Lotte..
So.. here is a collection..

This first one from the FDA is nice to show. No nonsense.... and good explanation on the website..

Here an animation on normal hearing, no hearing and CI..

Here an animation showing the distribution of the frequencies in the cochlea. With deeper incision of the electrode a larger range of frequencies can be experienced.. Normal insertion is enough to cover the frequency-range for speech.

Here a longer description of how the cochlea works... Very informative..

Lotte presenting her classmates....

Lotte was allowed to present / introduce her classmates....

Waiting to start

This video quite long, shaky and nothing happens. It's while waiting fo all the kids to enter the stage and sit down. Lotte is comfortably waiting to start..

 First introduction 
Clipped away a bit of waiting at the beginning... 

 Second introduction  

 Third Introduction

Tips: Pre- & post- operation

A nice comment in the previous post.
From parents whose child will have bilateral CI (the standard in Norway)  in February. In the comment, the request for more tips "pre- and post- operation..
Brings back memories... but with memories the problem is.... It fades...

So, first advice would be to start recording on paper, computer, video what happens NOW. Don't wait with it. Any progress after the CI has been implanted and activated is relative to the current situation..With "hearing" being the change, I would advice to make lots of video recordings of your child with how she is behaving now. the way she communicates now. Do you and your child use signs? Catch them on video. In the near future you might no longer be using them.
Lotte used to make loud, high pitch noises when being happy. Really annoying for people around (we were once asked in a restaurant to do something about that, but we couldn't..). I don't recall having a video of it, so the sound is lost forever. Wish I would have started a blog at that time, capturing that period, but I started this blog after he had the CI. earlier posts were from things we wrote down before the blog...


With that, you have the second advice. Don't just write it down, but organize it. In a website, a blog, a folder... So that you have access to it. Nowadays it's made so easy with all the blogging sides around.. Any picture and video can be uploaded and be part of your journey with your daughter. And not just for you. Also for your family and for other people that are in the same situation.
Like this blog. Essentially it's for us now and for Lotte later in life but the more people enjoy it the better... The good thing about the blog is that especially video is actually accessible. Many videos are on tapes, and we haven't seen them in years. Stored in some dark corner of the house after the video player broke down. Had they been on a blog, we would have had more possibilities to look back.


Third advice is regarding the time after activation. We didn't take the advice to stop using signs with Lotte. We refused to stop communicating with signs but used then together with sounds/words. We used the skills she had to teach her to hear and listen. It takes a while for the brain to realize the new input. Using sounds is of course essential, but we always accompanied them with the signs where possible. It didn't take long before Lotte herself would drop signs and use sounds only... Of course there has to be progress. When you keep using sign consistently there's less incentive for the brain to start learning to hear, listen.. The main reason one chooses CI is to give the ability to use speech as a way of communication.. That needs to be the overall goal..


Fourth advice would be to get in touch with other parents in the same situation. Easiest is via the internet. The yahoo group "CIcircle" for example (Now website www.cicircle.org) is great for that. Lots of people sharing their thoughts and giving advice. A great place to start. But there are many other message boards that do the same thing. a search on the www will reveal them.Of course there are many other blogs like this one, with children in different periods of their CI journey. There are many listed in Lotte's link on the side, and any blog will have links to other previously unknown blogs..


Fifth advice would be to talk a lot and read (aloud)a lot to your child. Lotte had never heard so every sound was new. Like with all new input.. one needs to experience is before one can use it. Learning a new language one would listen to it before starting to use it. I don't recall the numbers but a words needs to be heard 100's of times before a child will start using it.. So... Speak a lot. Just babble along. It all needs to go into the brain before anything comes out...


Six... Lotte was the second baby to have bilateral CI in 1 operation (the first with Cochlear Freedom). Carrying 2 bodywork processors would be ridiculous for a toddler, so instead the BTE's were used. They were too big to be carried on the little ears so they were put in little bags on her shoulders. This worked out so well for Lotte and for us that we have use this solution for a long time. It gave freedom to Lotte, since she would never be bothered by the heavy BTE's behind the ears (with other children sometimes hold in place with wig tape, or earplugs) and we never had to worry about losing them. (Lotte would not notice sometimes that the coil would fall off... Especially when caught up in playing..)
I'm not saying that one needs to use this system. I'm just saying that we used what worked for us. We were pushed to put the BTE's on Lotte's ears, but when we asked them "why?" there was never a clear answer. Most parents had the BTE's on the ears of their child, and it worked... We were the exception..


Seven.. Pre-operation... Lotte came out of the operation without problems. Not living in Oslo we had to stay in the hospital for some days. Very exhausting with a child that feels fine and wants to play.. Make sure there's enough to do. For the child and especially for you. (writing a blog perhaps...)
There must be more, and actually, I recall that on the messageboards there are better answers that this one..I will add some links when I find them... and I hope other people will comment with their advise so I can copy them into this post..
AH,, just remember something:


Eight: ... difficult as it is.. try to become experts. Those annoying parents that ask too much information to the doctors... Read & Ask.. In time you will become experts on CI for your child.. You WILL know better than the medical staff helping you. And you will notice that some people have no clue... and that's OK. The medical staff doesn't have a child at home with CI. You don't have the medical training for the details... In the end, you can tell THEM a lot about children with CI..We did this with the way we had Lotte's BTE's in the pouches.. We knew it worked. She had no problem hearing and learning to speak, and the medical staff couldn't explain why they needed to be on the ears... so... they stayed on the shoulder because WE knew it worked for Lote and for us..

A peek in the past and future..

5% the cochlear implant...5% the follow up....and 90% parental involvement.

2 Video's...

Thanks to: http://buzzsjourney.blogspot.com/2011/07/great-video.html

How it works....

==================================


==================================


==================================

Golf ... I L Y

Golf is Lotte's new activity... She loves to go to the course... well, driving range and putting- & pitching- green and whack some balls... And she manages well. Enjoying every ball that is launched....

  

....

Here's  video 1 and video 2 (Turn your head to the left for a more realistic view...)

Very nice little film....

Hardly anything to do with Lotte, but wanted to share it with you all.... :-)

Water-rat with wings..!!

Nope.. she's not afraid any more to jump into the water..

took a while for her to get this free, but then she went for it 100%

As long as she remembers to put on the little wings... she should be fine..

Enjoy her show...!

Lotte playing with Lego... (before X-mas)

Found it... The rhymes...

It's all about "10 little indians" and catching fish.. 

School is GREAT !!!

Before we couldn't shut her up....

Now, our little girl can't stop talking, but how was it in the "early years"...
Here two videos, both on the way to kindergarten....
Saying nothing in the first one... vocalising in the second...





It's good to have these video's because one forgets the phases - and when the child went through it... So, make regular videos.
And take the same "subject".. we video'd Lotte a couple of times singing a childrens' song. This way we could see the progress...

So, for those that just started the journey... be patience.. it WILL happen..

One for the record....

Lotte explaining golf to her mom...
I know.... in a way nothing special about this.. a 6-year old telling mommy how to play golf.
......... and that's exactly what makes it special!

Lotte puts on her CI

Some time ago, actually, below this post, I posted about how Lotte is wearing out the coil-thread due to the stretching when she put's it back herself.
I finally put it on video....

Oeps...

This one below is when she puts on one CI...

This one is looking from the back, putting on both CI's..

It was funny, because I told her to take them off, and turn to the door, so I could film her.
She understood fine... except that, with both coils loose, she couldn't hear me saying that she could put them on. Patiently waiting....


It's great to see how she hears so well with CI, but just as important, how she is fine without any sound.

Films - over the years...

Lotte got Bi-lateral CI in October 2004, and was hooked up November 2004...
We have taken loads of film, but until now, I haven't put any of it on the blog.... The filesize is too big to transfer it.

Today, that changed. I have uploaded some "snippers" to Google-video.
Even though the films will be in their appropriate (chronological) place, I'll put links to them here.....

They will still be quite large, so have a look at the size before you start looking at them....

December 2005,
These clips are after 13 months with CI...
2005-12-20 - "Positioneren - Sanne komt thuis"

Following are children songs. We chose some in order to compare it later on...
2005-12-20 - "Poesje mauw" (18 MB)

2005-12-20 - "Ik zag twee beren"

February 2006,
These clips are after 1 year, 3 months with CI (1 month after the previous ones..)... and the result of 1 month CI is astonishing....

Some of the same songs, 2 months later.....
2006-02-16 - "Poesje_mauw"

2006-02-16 - "Ik zag twee beren"

And a short video showing Lotte using only speech. 13 months after "hookup". Lots of talk without eye-contact with me. The a teacher apears. She greets her teacher and tells her the sweater is new...
2006-02-16 - "Hei Torhill"

Been a while, and some links don't work..
I'll try to fix that.. In the mean while... this is 2006 - I think..

Learning to speak again - Video

Interesting video with Michael Chorost.....

Look & listen here

CI - in the morning... is it working ??

(btw.. Lotte doesn't have this at all. No blinking whatsoever. Just "plug and play"...)

A nice tip on CiCircle - the Yahoo group..

OK, I just watched this short film that I think might be the best film about cochlear implants ever.
It is very funny and it will explain why some kids don't like to put their processors on in the morning. Or maybe I just have a strange sense of humor.
(It's also a great demo on how to fix an Advanced Bionics T-mic.)
Warning: the lyricsof the background music are probably not child-appropriate.
http://www.medhumanities.org/2007/03/equilibrium_sho.html

L

It is a great movie and the powerful "hookup" will possibly be valid for some CI-users.
Lotte is not affected like this when she puts her CI's on in the morning. Not a blink!!

But I like the way deafness is shown; just the heartbeat is "felt", no other sounds. How the hearing is turned on, and the tap that was not heard before can now be heard.
How only part of the song is understood with only 1 CI, and when the other one comes on, there's definitely something wrong.
Love how the repair is visualized, and how in the end, the guy can hear those beautiful words... "I love you!"

Have a look, and enjoy !!

(YouTube version below.)