Hearing... with the shoulders, and the ears...

Lotte is doing great.
As previously, a vacation with 1 language is doing her good. Not that there are problems with her speaking Norwegian and Dutch when at school and home (besides... she loves to speak English as well..) but having people around her - especially children - that only speak Dutch helps her by focusing on 1 language.
The vacation went well. She understands much more, which gives her more security regarding upcoming events. Life makes sense when it's 7 days and then the plane, 10 days and then to Italy, 8 days and then a birthday.
The pictures here show Lotte in "Openluchtmuseum Arnhem", the outdoor museum in Arnhem. Lots of historical Dutch houses, trams, cars etc. A peek view into the past. One of the exhibitions was about the history of Holland and the "Molukken" in the second part of the 20th century. (1950's sounds closer by :-) ... btw... A sad, badly handled piece of Dutch history.)

Lotte wanted to listen to some information, and as you can see, she hears with the shoulders.
It was nice to see that for her it was an automatic, natural way to do it. With the phone we tend to put the BTE on the ear, and she can speak freely. Here, she went her own way, and put the speaker straight at the shoulders...

Even though we can see that Lotte is doing well with the BTE's on the shoulders, on her back, we were wondering what the real difference is between the that position and on the ears.
The Norwegian support group has alway been pushing for it, like anywhere else in the world, and supplied us with baby-worn stuff.

Clips to keep the BTE on the clothes. Worthless in our opinion. Far too bulky. Not an option to start using that. The pouches we are using now, with their different ways of attaching (clips or safety-pin) is working far too well.

In order to put the BTE on the ear, a clip (snugfit) is provided that holds the processor, and of which the end can be bent around the bottom of the ear. Since we have no desire to start using earplugs to secure the BTE, this seemed like a good thing.......

The batteries can be on the back due to a special cable... So, the weight of the battery is removed from the ears... but there is still a cable down the back... or front, wherever preferred.... (armpit.. Hmm..) .

We were still not convinced, or motivated.... so we thought about finding someone to experiment for us... To see how much difference there was..
The idea was that we would send long coils (We understand they are very expensive..) and two little bags to a Bi-lateral Freedom CI -user that would be willing to try it out and give us feedback about the difference between the BTE on the ears and on the shoulders...
Via some people from messageboards we came across Laurie Pullins. (See her blog entry here..) She was very willing to give it a try, so we send her Lottes old "bags" (we have plenty of them thanks to Kylie) and some used coils that we keep as spare.

This was before the holidays, and the result was in when we came back..


Laurie indicated that there was a difference. Here's part of her experience..

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.... .....I did notice that when I put my CI's on my shoulders with the little pouches you gave me, that my voice sounded distant and "nasal" like I was in a swimming pool. This did not change after a few days. But, the brain is amazing and would probably have adjusted just fine over time if I kept them that way.

When I was Lotte's age, I wore a body aid and my microphones were on my chest. I never knew anything different until I went to the BTE's (Behind the Ear) in my 20's. And I adjusted.
Also, I am an adult and the distance from my ears to my shoulders and the pouches between my shoulders is probably greater than a child like Lotte. Her CI's are probably closer to her ears from her shoulders than mine were.
Because I use the phone and have to change my batteries regularly, it was not easy having my CI's on my shoulders. I had to hang the CI on my ear so I could use the phone and take them off (out of the pouches) to change the batteries. You probably do all that for your daughter.
As for "surround sound" with the bilaterals, no difference.

That is all I can think of. If I think of anything else, I will let you know. .........

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Needless to say, this was great information, and we decided that we would start testing the BTE on the ear.
Our main worry is if the BTE stays on. We never needed to worry about losing it.
So, last weekend we did the test.

Converted the BTE+AccuLong Coil to Earhook+BTE+Short Coil+Accu. Required the magnets to be moved between the coils.. but OK...
Then for putting it on the ears.
We realised.... Lotte doesn't have an indentation on the bottom of the ear. No earlobe.... Whatever it's called, the hook has nothing to hook around. (Take a peek..)
Lotte's mom doesn't have it either. I do, and Lotte's brother and sister both do... without ever using it.. :-)

Still.... it was "hanging in there"... and Lotte didn't mind the change.
It was pretty obvious that having the Accu's on the back is no real improvement compared to the BTE's on the back.
So..... the complete BTE on the ear. Again, same problem, but the weight actually helps pinning it down. So.... forward with that contraption..
It was great to see her use it immediately... Picking up a phone at will (without us needing to adjust the BTE from the back to the ear), and when asked if the sound was different, she acknowledged that. However.... I'm not sure if she understood the question.... I think it's one of the moments that she guesses the right answer....
All well, until the next morning.... She came to us, crying, upset, because her "ear" was broken.
Turned out it dropped from her ear, and the connection between the Battery/Accu-holder and the processor was damaged. (A bayonet-type connection where three lips hook into the other side. 2 lips were broken off)
Some tape keeping the two pieces together fixed the problem until the new processor arrives...

So.... we went back to the BTE on the shoulder... We do keep it up much higher, and closer to the neck instead of low on the back. This is a bit more awkward when carrying the schoolbag, but who knows, perhaps it makes a difference.

What we did find out is that (if) any reduction in sound Lotte is perceiving does not weigh up to the ease of using the BTE on the shoulders. Not worrying about losing it, getting sand in it etc.
We also found out that for Lotte it makes no difference.
Another thing is - which we realised when we put the BTE's on the front instead on the back, is that when people see Lotte, they see her first, and then they will see a BTE or a coil. Not the other way around.
With girls, a BTE is easily covered by long hair, but with boys, a BTE on the ears is very obvious... Not a reason to remove it from the ears, but when we were experimenting, this was one of the realisations..

So, we're requesting a new processor, and continue with the BTE's on the shoulders. A bit more conscious about where on the shoulders, but still.... on the shoulders..

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.

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.)

Hair Do!

With Lotte, the coils of the CI can be "integrated" in her hair. We let it grow long for this purpose. (And because it looks good on her..)
We never hide the coils, and most of the time the CI is on top of her hair.

 

But sometimes - when the patience is there - it is possible to hide the coils below the hair.
Once, we actually put the coil-wire in there but this was not a succes. The coil-wire will entangle in her hair and will hurt her.

HERE'S TROUBLE -- BEAUTIFUL, WONDERFUL TROUBLE

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.)