Wear on the coils..

With the way Lotte is wearing her CI, the BTE's on her shoulders, there's quite some stretching involved when she puts them on herself when they fall off. (Have to make a video of it... here it is)

Here are some pictures of the damage that is done to the coils. Mind you, they last
quite long. What you see is the result of 4 to 6 months.

The first picture shows a torn outer "casing" that protects the wires running inside. The second picture shows twisting due to the constant handling by Lotte. (This actually doesn't happen any more. It was from quite some time ago.)

BTW.. the coils shown still work fine. We only replaced them to make sure Lotte will not "lose sound" because the coil would fail during the day. I think this happened only once or twice in the time Lotte used CI. (3 years almost.)

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..

BTE or Bodyworn...??

This will allways be a question when the child starts with CI, and even more so when the child has bilateral CI.

When Lotte was one of the first to be implanted bilaterally, the Freedom had just been developed and even though she got "Freedom" on the inside, the outside was the old Nucleus. So the only bodyworns available to us (Lotte) were the "big" cases, and two of them would have been massive.

(I believe the one on the right is the bodyworn at the time....)

So, the Ci-team proposed to use the BTE's, but after picking them up 15 times an hour (per ear...), we decided that on the ear would not work. 2 coils and 2 BTE's that can loosen and fall off is too much to handle....

(Also, Lotte allways pulled off the HA's and we were not looking forward to a similar behaviour with the CI's'. In retrospect, she has never taken off the CI's. We have been fortunate with that..)

Being the engineer in the family, I clipped off the fingers of an old wollen glove, put the BTE's in the fingers, a safetypin through it and pinned them on the shoulders of Lotte...

That worked fine, without too much falling off of the coils. Plus, no need to hang the BTE on the ear.... That is allways secured (and can allways be found..)

We tried a couple of time times to put it behind the ear, but the combination of earsize and BTE-size is not compatible. Doublesided tape etc. could work, but Lotte really disliked that solution. After all, she is used to the ears on the shoulder, so why bother?

To give an impression of the difference, here are two pictures. One with the bodyworn, one with the BTE's on the shoulder..

....... vs .......

Coil+Earhanger+Bodyworn ....... vs ....... Coil+BTE (click to enlarge)

So, for the last 2-1/2 years she has worn them on her shoulders and without any problems. This includes playing outside in the sand 50% of the time when she's at the kindergarten, and the BTE never failed and was never lost. Also, the staff there can just put the coil on when Lotte for some reason cannot do it herself or simply forgets (in the beginning she would just not bother. Nowaday, she immediately puts them on..). There's no hastle with tape, glue, ear-hangers that go in the ear or caps.

As mentioned, the only thing that can fall off is the coil-piece, but soon she figured out how to put that back. Actually, that is a small disadvantage. By putting them back herself, she is putting some tension on the coil-cable, but the are pretty strong.

Remember, there's nothing on her ear, nothing in the ear, nothing on the head, except for the coil. The BTE's are safe on her shoulders.

We were worried about the BTE's under the coat for example (scratching sounds), but she has no problems with hearing when they are under the coat. Guess the coat id holding the BTE's steady so there is no scratching.)

Advantages:

* You will never loose the BTE. It's secured,

* Only the coil can fall off. The child can put it back her/him-self,

* Much lighter than the bodyworn,

* Still accessable (sp?) for the parent to change programs,

* BTE's are spaced out wider than the ears, so (I think) perception where sound comes from is better,

* We use a safetypin to attach it to the clothes so it can easily be changed from one piece to another,

* No need to buy/make special pockets in clothing, just 2 little bags with safetypins,

* When raining the BTE's will be under the clothes. (and as said, she'll still hear without problems), when there's much wind, it will also be protected from that, not causing weird sounds,

* ...... I'll think of some more - to be added later
* ...... You'll think of some more - Put it in a comment, and I'll add it.

Disadvantages:

* Possibly: Sound has to be picked up from the shoulders, (but that does not seem to affect her hearing capability. She hears a pin drop on the table... literally!),

* Possibly: Scratching sound when a coat is worn over the BTE's but we have not seen any problems,

* Cannot use rechargable batteries,

WRONG! - got info (See comments) that they are available.... only in Canada and USA??? Not here, but we will be working on it !!

* There's strain on the coil-wire when the child puts it back her/him-self, (but in the last 2-1/2 year only 1 failed.),

* There will be holes in the clothes when the fabric is thin, (but how long do these cloths last anyway..),

* ...... I'll think of some more - to be added later* Possibly: Localising sound after hearing it, initially cannot be done by turning head. The shoulders would need to turn. But like with us, we allready know where it comes from when we turn our head...

* ...... You'll think of some more - Put it in a comment, and I'll add it.

Do want to mention, that recently we started to use the BTE on the ear.

We have a feeling, call it a hunch, that Lotte wouldn't like to have the BTE's pinned on her bare skin, so at bedtime, straight out of the bath-tub or from the shower, we put the coils with the short wires on the BTE and hang them on the ears. She's OK with that but still prefers to wear them on the shoulders. But she needs to get used to it anyway.

Communication

Soo many beautiful pictures....
Came across this one, and just had to put it here....

August 2006

She's grown....

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2005-01 ----------- 2006-12

What does Lotte feel, what does she hear...??

One problem for parents with young children that have CI is to grasp what the actual experience of CI is like. Obviously, these children have no previous experience of sound, so there is nothing to compare it with. Their experience is as it is. For them it's normal.

In a previous post, there was focus on how we as parents of young children with CI go through the same experiences and how this makes an invisible bond.
But also the older people that actually have CI in the messageboards are close to us. This because they can give us an insight in our childrens world.

One example, discussed before, is the feeling of the CI or coil being put on or taken off.

I have copied part of the posts (that I copied into the comments) below, but a couple of experiences I have put down here. It's a wonderful insight about how it might be for Lotte; even thought every experience might be different. (As said, more info in the comments...)

AllDeaf, september 2006

Its more like a whine - its the complete *absence* of sound -like severe tinitus that lasts about 30 seconds. I think its the auditory nerve getting used to going from a state of high stimulation to nothing.

whoosh or whine, well stand in the room where your tv is with sound on. blow a whistle to yourself then suddenly stop, notice it is quiet for a second the sound start hitting your ear eh.

AllDeaf, november 2006

When I attach the coil I hear whatever is in the vincinity - be it voices, music, whatever- there's no "waiting period" or needing to get used to it - [...] However, when I take the coil OFF, I get what is like a high pitched "whine" sound - [...]

I always get that weird sensation when I take my coil off, it lasts about 2 seconds. [...] As for putting on the CI, I get like loud beeps [...] for 3-4 seconds...not too loud, but is noticable.

Cough Medicine

Yesterday evening,
Lotte was caughing a lot while asleep. When we went to bed we decided to give her some cough-medicine in order have her sleep more comfortably.
Normally, when her CI is off, we would use sign in order to talk to her, but now she was somewhat asleep, with her eyes closed. It seemed a pitty to wake her up so much that she would notice us....

So we put on the CI and talked to her. She was sleepy, but she got the message. She could keep her eyes closed as we gave her the medicine and let her on the toilet...
It was so good for her, since when she hit the sheets again, she was sleeping allready.....

Bags for the BTE

How to practically carry the BTE or bodyworn processor and coil ??

Our experience with the HA's was not good. She accepted having them behind the ear in the deaf pre-school, but as soon as she was leaving there, the HA's would come off. Which is no fun, driving the car, having your 2-year-old pulling the HA off, whistling everywhere, and the HA's in several pieces.......

So, with the CI, we decided to find another solution...
The BTE's of Cochlear are a bit thick. They fall off easily and we didn't like attatching it with wires around the ear, plugs in the ear, double-sided tape, etc. Especially when there are two that can fall off.



We very quickly chose to put them on her shoulders. At first I cut of fingers of a glove and attatched them with a safetypin. The providers of the Cochlear system - Medisan - quickly made sturdy bags, with a little flap that closed with velcro.


Another advantage of having the BTE's on the shoulder is that the BTE's don't show with the hair done up as shown here.... (Often we put the coil under the hair to make it harder to fall off.)













A couple of months ago, I sewed the safetypin on the bag. On the picture the flap of the bag goes through it. (Flap secures with velcro.) The microphone is sticking out.
As can be seen below, there is quite some wear on the bags, but for something used every day, 10-14 hours a day, they last quite long.

Some detail pictures of "our" system.... (Like with all pictures, just click to enlarge.)

(Here's some more info and comments in the blog regarding the BTE-bags.)

"The ear isn't working"

Today one of those huge moments.
In the beginning of Lotte's CI journey, Lotte never noticed that the CI was not working or if the coil had dropped off. She probably just went on with what she was doing, not being bothered by the lack of sound.
About 1 to 2 months ago, she started indicating that her CI was off. That is, she would come to us when she couldn't put it on herself.

Today however was the first time that the told us that the CI didn't work.
Lotte said to her mom "The ear doesn't work"
whereupon my wife said: "Can you go upstairs and get new batteries?"
Lotte answers "OK" and got the batteries..

WOW, it is so thrilling to see these kind of "breakthroughs...." !!
(AllDeaf)

Restroom conversation..

Today the kids and I went to the cinema.

Lotte and I went to the bathroom before the film started. She went into the one next to me. Doors closed (both booths entirely closed as well), and we had a conversation!
Even though the acoustics were lousy, sound from far away and no eye-contact, she understood perfectly well what I was saying and would answer all my questions!

Mous

Reacties & Feedback

Velen hebben nu een link naar deze Blog gekregen..... dus ik dacht dat het passend zou zij om hier ook een reactie te geven.

Gewoon op ".. comments" klikken, en vertel maar wat je er van vind.
Persoonlijke ervaringen wat betreft Lotte zou ook gaaf zijn!

Bedankt

---

Many people have been given a link to this Blog.... so I thought that this post might be appropriate to give comment on it here.
Just click in the ".. comments" area below and give me some feedback.
Personal anecdotes regarding Lotte would be great as well!!!

Thanks

Siblings and attention

Having a brother and sister really helps Lotte in her development. All the (waking) time she will have children around her that are a rolemodel for speech.
But still, with a child that needs additional attention - due to a communication gap - the attention towards the other children is unintentionally reduced.
They are at an age that they understand how Lotte does need some priority and they handle it really well. So well, that it is not noticed....

That is, until it's obvious.
Yesterday, Lotte had one of her stubborn moods. Refusing to put on cloths that were chose by her mom. Discipline didn't help and with a mother that needs to address two other children that need breakfast and need to go to school, frustration grows rapidly (I was offshore, so I was no help...)
The atmosphere at the start of such a day is far from good, but as I said, the other two are handling it really well.

But they need more attention. Attention without Lotte around. Attention just to them.
So, we hire a babysitter for saturday that will take care of Lotte (they know each other from the kindergarten) and Jelle and Sanne will be treated to a nice afternoon in the cinema and restaurant.

And these kind of things will have to happen more often, because it is too easy to forget the help one gets from the others.

---

It would be interesting to find out how the development of a child depends upon it's place in the family. A only-child with CI will have a different development compared to a child that has siblings. And even with brothers and sisters, the development of a deaf child will depend if the child is the oldest or youngest (or in the middle).
Would Lotte have developed if she had had a younger sibling... probably... because this sibling might have been at the same stage of speech development.

Anyway, we feel blessed with how it turned out; Lotte as the youngest with an older brother and sister....
She has no idea (yet) of how lucky she is!

Mapping - 2-year evaluation

Her 2-year evaluation was this month.

This is done in Oslo (all the mapping, as well as the operation) and took just 1 day.
One of the teachers of the kindergarten joined us, since it's good for them as well to see what it means to have CI.

Two sessions were scheduled. The first one is primairaly checking the equipment, and then some hearing tests. To see where the limits are. Limits regarding frequency but also regarding amplitude... She was great and surprised the technician with some of the sounds she could hear.

The second session is normally a short session. Testing the understanding of speech.
Sometime this can be tricky, since this is all done in Norwegian whereas she hears Dutch at home and Norwegian in the kindergarten.

This time it took more time. Partly because it is a 2-year check, but also because Lotte was responding so well that the audiologist wanted to do some extra tests. (Doing well as in being patient and not getting bored, tired etc.... Guess the loves the attention - being a Leo)
So instead of the anticipated 30-45 minutes, it took a whopping 3 hours.
In between we stopped in order to get Lotte an icecream.
However, she noticed the pineapple on the paper wrap and decided there and then that she would not like it.... (Anything green, looking like fruit or vegetable she will refuse.) So, it ended up with NO icecream.

But our little girl is doing great. In the kindergarten the speech therapist did a test with her to find out what "speech"-age she is, and came up with 2½. That's great for a child that heared for the first time less than 2 years ago!!
(AllDeaf messageboard)

How to judge improvement...

We ourselves don't realise the improvements we (or in our case - our daughter) makes. We sometimes notice on the spot that her pronounciation is correct after repeating words, but sometimes we have to stop and realise that the word she just said is correct... where a week ago she would not be able to pronounce it....

A couple of days ago, I put on a tape of Lotte from 1½ year ago and my wife and me could not believe the difference.!!!
At that time she had the CI for 7 months and she was doing well, but compared to now... it's just amazing. There she would make sounds. Lots of them, but often not recognisable. Now, she is great at repeating words...

It's good to have your own tests.. Like we have her sing a little song now and then, and catch it on videotape, and compare it with the last time we did it.... and the first time.
This gives a good idea of the progres, and the progres is really there.... it's just difficult to capture it.. Video is GREAT!!

Communication

Little update..

Yesterday we were at a museum with an excellent playground.
Lotte wanted to go straight in, so that was fine. She quickly picked up a little friend who she guided through the maze. They had great fun. It was one of the first times we would see her spontanious interact with children that do not use sign. Being in the hearing pre-school/kindergarten, she is more used to making contact with these kids. It's great to see.

When the girl had to leave, Lotte even had a conversation with the mother of the child. It was great to see the selfconfidence of Lotte.
The exposure to hearing-only environment is showing now.
Decisions we make regarding her upbringing are allways made with the correct "gut"-feeling but even so it's allways good to see the effects.
It's sometimes difficult because like with all major changes in children, it gets a bit worse before it turns around and almost explodes into good..

Yes !!!!!

Little update..

Yesterday we were at a museum with an excellent playground.
Lotte wanted to go straight in, so that was fine. She quickly picked up a little friend who she guided through the maze. They had great fun. It was one of the first times we would see her spontanious interact with children that do not use sign. Being in the hearing pre-school/kindergarten, she is more used to making contact with these kids. It's great to see.

When the girl had to leave, Lotte even had a conversation with the mother of the child. It was great to see the selfconfidence of Lotte.
The exposure to hearing-only environment is showing now.
Decisions we make regarding her upbringing are allways made with the correct "gut"-feeling but even so it's allways good to see the effects.
It's sometimes difficult because like with all major changes in children, it gets a bit worse before it turns around and almost explodes into good..

Yes !!!!!
Copied from messageboard Alldeaf.. 

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)

New kindergarten / Preschool

As mentionned before, Lotte "grew" a lot during the holidays. A lot can be contributed to being in an all-dutch environment with little to no signs.

2 Weeks ago she went to an all-hearing kindergarten for 3 days in the week. This went very well. No problems adjusting. She's enjoying it tremendously.

It was funny that on the second day, one of the teachers said that Lotte used sign which - off course - they don't understand. There was no frustration from Lottes side that se was not understood.
I asked them what she signed, and it was "home". Then I turned to Lotte, and asked her... what is "this" - making the sign for home, and she immediately replied - for the teacher to hear - "home"... This showed that she was just tired and didn't want to speak. And it showed in a nutshell that she's at the right place. In the other kindergarten people would have understood her. Here, Lotte will have to speak in order to be understood.

In two weeks we can see the improvement in her speech. It's difficult to determine if it's due to more hearing-environment, but the progress is there.
(AllDeaf)

Vacation in the Netherlands

Time for an update..

Vacation time, so we took the boat from Norway to Denmark and drove to Holland (actually The Netherlands). I flew back (some people have to work) and left wife and 3 kids in Holland.
This was about 2 weeks ago and with Lotte the effects are clearly visible.
Especially now when my wife is visiting good friens (also with 3 kids) where Lotte is playing with the youngest; 3 years old. In speach he's a bit ahead of Lotte (4 years) but the have no problem communicating.
They play with each other, which for a child of 3 is unusual (normally they play besides other kids) but it goes like clockwork.

Lotte's speech has improved over the last two weeks. The cause seems to be that she is using Dutch only there. (There is absolutely no Norwegian being spoken.) Sign is still used occaisionally, but also far less that in Norway where she can use it a lot in the kindergarden.

Clear sentenses are appearing now. Like "Mom, can you give me knive". It's great to watch the development and it's going faster and faster.
She gives better indication when she doesn't want to use it any more. This is in the afternoon when she's probably tire of playing all day and hearing all deay. We have the deal that she has to goto bed when the CI is taken off, but perhaps, with 5 other children chatting in her ears all day, it might be an idea to have it taken off when she requests it. (I'm sure this falls in the category "Forcing to wear CI" for some people.) Without CI she will still talk normally. No low or hard voice, she just continues as if she hears..

The vacations in Holland have allways lead to leaps in her development. The focus on 1 language seems to make the process accelerate. When coming back to Norway (2 languages) there is no problem adjusting. The progress made is straighforward applied to Norwegian. It's a cognitive process that is stimulated..

Sign is still important. It is now mainly used when she can't hear like in the shower, the pool. Sometimes she uses it when she wants to say something and we don't get it. She'll start with speech, but will add sign if needed. When she's exited and wants to tell stories she also uses sign, but less than before.
Sometimes this is a problem, because with sign, we understood what she was talking about... now we have to guess sometimes...

But.. it's wonderfull to see her grow up like this.

Actually - this is Norway! (june 2006)

(From AllDeaf messageboard.)

Reading

With the subject of reading being so important brought up, I thought of posting some pictures of Lotte and her big brother. (9 years)

She doesn't even realise how lucky she is with her brother and sister.

Those two are tight. All three of them, but Lotte and her brother have a special bond.
When she's angry, annoyed, upset, or just doesn't want to calm down, he will not be able to watch it and will comfort her...
And it will work. He's got so much patience that he'll be able to get her out of any dip.
Fortunately, it doesn't happen too often....

You should see them kissing each other (the 3 of them) good night. It's part of the ritual for going to bed.
Lotte will give the other two a kiss, then me and then her mother will go in with her and the'll sing a couple of songs.
The same songs that a year ago we would do with sign only!.....
It all goes so fast!!

Communicating

From Left to right: Lotte, her sister and a friend.... COMMUNICATING, HAVING FUN