A house full of music..

No words.... (except these five..)

And for those who want to sing along with Lotte on the piano... Here are the lyrics..

(Barn av Regnbuen - Child of the Rainbow)

"Music is what feelings sound like."

Lotte scored a T-shirt today..... She picked this one out of the rack... and we couldn't refuse...

We're sure she doesn't understand the significance of the statement on the shirt.. and that's fine... 

But there's a lot in that little sentence.. "Music is what feelings sound like." 

For us, it's straightforward true. We are moved by music. We get happy, we get sad and many "colour" - better said "notes" - in between these two..

And especially in this last week, with the terrible events in Norway this sentence becomes even more true.. There are many songs, poems & lyrics that "speak" the feelings of a whole nation in grief. A whole nation showing their love for each other in this time of sorrow..

Below are some examples of these songs....

I would like to say... "Enjoy", but that would be misplaced...

I will say "Be Amazed"....

The song below was sang in the Oslo Cathedral... A poem by Norwegian poet and writer Nordahl Grieg, set to music. 

Of course, the song is in Norwegian, but if you're interested read this English information first - there are translations of the lyrics - and then listen to this one from a long time ago... .

... or this one... where a new generation is repeating the words... in a new era...

And there is more... much more.....

Very nice little film....

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

Time for piano- and singing- lessons.!

Thought to show Lotte's musical side coming out.
We asked her if she would like to learn to play the piano.... Of course she does :-) She started practicing immediately...... Any pianoteachers out there..??

Otherwise..... singing is another of her passions.... Any language will do.. This one should sound familiar..

Enjoy.!

..... Words !! ".....Say them, you can hear them."

Didn't we just make a post about words... and how important it is to all of us... ??

Well, The Real Group - a fantastic a-capella group made this song about it...

.... and find more Real Group stuff. It's great music!


(Arranged by Anders Edenroth, Lyrics by Anders Edenroth. (2004))

Words! A letter and a letter on a string. Will hold forever humanity spellbound.
Words! Possession of the beggar and the king. Everybody, everyday. You and I, we all can say...
Words! Regarded as a complicated tool. Created by man, implicated by mankind...
Words! Obsession of the genius and the fool. Everybody, everyday, Everywhere and everyway...
Words! Find them, you can use them. Say them, you can hear them. Write them, you can read them. Love them, fear them.
Words! Transmitted as we're fitted from the start. Received by all and we're sentenced to a life with...
Words! Impression of the stupid and the smart. Everybody, everyday. You and I, we all can say...
Words! Inside your head can come alive as they're said. Softly, loudly, modestly or proudly...
Words! Expression by the living and the dead. Everybody, everyday. Everywhere and everyway..
Words! Find them, you can use them. Say them, you can hear them. Write them, you can read them. Love them, fear them.

Music...

Today two great experiences with Lotte.
It started in the car, driving to the kindergarten. At times, she asks to have the radio (CD) on.
Today however, I had allready put on a classical piano-CD in the player. (Ludovico Einaudi)
Lotte did not seem to like it. She told me she wanted different music. She told me where to find it (in the dash-board) and told me it had to be the woman.....
I found the newest album of Katie Melua, and both of us were happy.

Tonight, she wanted to play the piano. With her mother playing the piano, she has an excellent role-model, and in fact, Lotte uses the same sheet-music as her mother.... the same passion, but with different results.....
Here's the video..... enjoy! (33MB)

Perfect That Way

I posted the lyrics below in a post on a messageboard. The lyrics are very touching, and even though I do not see Lotte in this way, it is good to realise that there are many different people in this world.

On Hands & Voices, I found the link to the actual singer and a story about her. And, almost as a bonus, there's a MP3 there with the song.. all the way on the bottom.... or click here.

(Get your hankies out!)

Perfect That Way She was born a little less than perfect at least in that doctor's eyes he said that she'll be different much more than you ever realized that girl grew up not knowing the sound of her mama's voice God's gift to her was silence in a world so full of noise and she sings with her smile and talks with her hands she listens with her heart so she always understands she believes there's more to life than the sounds that it makes she's perfect that way shes got a sign for the thunder one for the wind and the rain she's the kind that keeps you laughing and the first to see your pain and she sings with her smile and talks with her hands she listens with her heart so she always understands she believes there's more to life than the sounds that it makes she's perfect that way she believes there's more to life than the sounds that it makes she's perfect that way she was born a little less than perfect at least in that doctor's eyes.

A reaction came on my post, saying:

"Cloggy - I am confused.... you brought up this poem which say that a deaf child is perfect that way. (I really related to that poem) Yet, you had your daughter implanted bilaterally."

My reply was:

"Fair question... My daughter is perfect, like everyone else.

And before we knew about CI, we accepted how this child was going to learn us something. A new language, a new way to "travel"

When we heard about CI, we investigated, and found out that this perfect girl would be able to join us in our hearing world. Would that make her more perfect - NO. (How can one improve on perfect?)

It would however give her more connection to her family, friends, people around her.

Would she be less perfect had she not had CI.. NO.. She would still be her.

We made it possible for her to hear. As parents, we made that choice because she was too smal to do it herself. With making the decision for her, we made sure that the possibilities that are there, are used to the maximum..

Again, she was perfect when she was born. She still is..

Perhaps you have to look at it this way... We didn't fix anything. We gave her someting."

The CI stays on!

One of my wifes hobbies is playing the piano, and during our stay in Italy (without the kids - we can recommend that..) we witnessed a concert in Siena, on the Piazza del Duomo / Piazza Jacopo della Quertia, by Ludovico Einaudi. A magical concert, where he played beautiful easy-listning music. One of them was "Le onde". I managed to find the music and downloaded the score.. Ever since, the music has been part of our house. Wonderful..

At least, up to a couple of days ago. My wife started playing, and Lotte said "Mommie, it hurts."
My wife realised that the sounds were coming in too strong, and played softer, but with the same result, actually, Lotte became upset.

Previously when she heared a sound that "hurt" (which happened rarely) she would have taken the CI off and continue with what she was doing; so my wife suggested this.
But this time it was different. No way was she going to take off er CI.

Appearently, there's a wish to have sound around her. When there's activity in the house, she probably wants to hear what's going on. She wants to be part of it, perhaps even be immersed in it.

But anyway, whatever the reason, it is something new. A new step, or phase in her life...

The CI stays on!!

Music...

One of those great moments just happened....

I'm sitting with Lotte at the table playing the "balancing game" and my wife starts a CD (music). As she walks towards us, and the music starts, I ask Lotte. "What's that you're hearing?"

Hoping she get's the question, wishing she answers something like "Music" .....
she answers... ( with a face like "do you really don't know yourself.." )

"Guitar!"

We choke up, and look at each other, in awe!! Sometime we take things for granted, and then sometimes we notice that that we underestimate her...

Note

Last week, in the car, she heared a woman sing, (actually, Katie Melua,) who sang a long, high note
Lotte repeated it. Perfect pitch!

These are "just" little moments.... but they have so much meaning!

Bedtime ballerina

Lotte had gone to bed and was allowed to read a bit before falling asleep.
Suddenly I heard Vivaldi's Four Seasons and wondered where that came from. In her bed, Lotte was lying on her pillow, playing with a little musicbox.

When you open it, a little pink ballerina will do her pirouettes. Lotte was carefully following the ballerina's movements with her index-finger, totally oblivious of the fact that there was music involved.

I went into her room and put one coil of Lottes CI to her head .
You should have seen the sun and the stars that came through! That smile said more than a thousand words, and will probably be one of the most beautiful ones I will ever see.

O, blissfull motherhood........

Mous

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.)

Technology... can we really compare HA's and CI's?...

It's easy to compare cochlear implant (CI) with a hearing aid (HA) and frequently this is done in a single breath. However, not by people that have used a HA before, and now use the CI. They explain that CI goes beyond HA. Not just a little, but a lot. For Lotte we have no comparison other than she did not benefit - in our opinion - from HA's.

But there's another part of the equasion that is quickly forgotton. And that is the CI of 10 years ago, compared to now. I quickly compare to our computer now and 10 years ago. We cannot imagine using a 10-year computer with the programs we use nowaday's. It simply will slow down to a complete halt.

This is how I see CI as well. 10 Years ago, software and hardware were far slower and perhaps this brought the CI's closes to the HA in most respects. After all. With the speeds available at that time, all processing power needed to be used for speech. But nowadays, technology has become so much faster, that with the same capacity a wider frequency-range can be used. And is used.

Manufacturers are moving more and more into virtual electrodes and creating software specialised to enjoying music. The new CI-user is no longer satisfied with "just" speech but wants to go beyond that. More environmental sounds and music.

With Lotte we see her speech development which is going well, but more impressive is the level at which she hears. She is able to hear very soft sounds. She's able to whisper, and understand whispering.
But with music she shows little interest. She uses melody but sings in a monotone way..
Is this due to her development or is this due to mapping being focused on speech?

The technician mapping her is very good at his job. He has done it from the first time CI came around, and in a way made it possible for many children and adults to hear.
But this might be the problem. Focus has allways be on speech for him. THIS was the goal and accomplishment. The achievement was to go from deaf to hearing to understanding speech. There was technically never room to go beyond speech, and perhaps this is still the attitude and expectation. Even though technology has moved one, the idea of hearing more than speech is still foreign.

Obviously I'm lacking knowledge in this area. What are the possibilities with Freedom CI. She has the latest equipment both inside and outside, but I have no idea as to what level it is being used.
What I do know is that Lotte is developing well, speech-wise, and that she has never had a bad experience with CI in the way that she does not want to wear it. She hardly pulls it off due to discomfort and is quick to put it on again.
But, there must be more possibilities. Other companies advertise with their progress (e.g. Advance Bionics, MedEl), showing the possibilities, but little is heared when we do our mapping.

Time to investigate!!
--------------------
Cochlear - Smart Sound - Much information in the Global White Papers (Have to log in)
Advanced Bionics - Hi-Res FDA approval - HiResWFidelity120.pdf (Available for adults only) - Bilateral Study Overview
MedEl - FineHearing

Singing

Lotte never sang in tune. She loves singing and can sing the melody but mostly out of tune...

Yesterday however she started to sing in tune.
She was sitting in the back of the car with her brother - (who's 5 years older) and together they continously sang the same song..

(We said it before.. she is so fortunate with 2 older siblings....!!)

So this is coming into place as well.
Sometimes one feels one cannot ask for more, since the whole technology is allready giving soo much, and then this happens.
Another milestone.

Dinner with friends

Eating just a little bit of sheapards pie, followed by a massive amount of ice-cream!!!

It's so great to see her interact with our friends. Even though they (our friends) went to sign-courses, they would most likely never have had the skills to communicate fluently with her in sign. Children learn so quick and are immersed in it almost their whole waking time. We, as parents, would have been able to keep up, but for friends and relatives, catching up is very hard.
With Lotte's CI, communication is no problem....

You just have to love technology!!
Just a comment:
We have not yet used any additional systems for Lotte to listen to music or TV. We have the wires to plug straight into the BTE, but we have chosen not to use them. She understands fine without them. Help might make her lazy.
We did try to connect a MP3 player with songs and stories that she likes, but there was little reaction...
Will have to try another time..

Playing the flute

Yesterday, her sister, Sanne came home with a recorder and enjoyed playing on it. That was enough motivation for Lotte to find one herself and blow on it as well. In no time the house was filled with random notes... most of them false.
My wife helped Sanne to play a tune. She closed the holes, while Sanne blew. This went fine, and of course, Lotte also wanted to do this. And this went GREAT!! She blew at the correct intervals, excellent timing. She picked it up from her sister and repeated it without problems.

Couldn't resist putting this picture here. She collapsed the day before, being dead-tired and dirty as a pig... This was the result when she came down the next morning....

Good Morning !!!

(AllDeaf)

Experience

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 fully 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.

Showtime....

2005-02 - (May) Update
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..

Noticing Sound
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 uses the old type BTE.
(AllDeaf)