Ear-plugs for Lotte - Fair enough...

Yesterday- Sunday started with Lotte with the BTE's on the ears, the batteries on the back... All went well until she came in after playing outside.. Guess she felt the contraption on the back. so she demanded to have all of the BTE on the ear.
Fair enough..... We're experimenting here...

Then when we were talking with her about using it at school we came to the part where she has swimming on Monday and gymnastics on Tuesday.... She stopped us and explained:
"You know.. this is how we do it. I will have it on the back (the old way) on Monday and Tuesday, and Wednesday, Thursday and Friday I will have it on the ear." Excellent... she's taking control of her CI...
we think the change to wearing it on the ears is enough... She doesn't want to add to it the exposure of explaining to the teachers how the earpieces have to go back, how the tube goes into the earpiece etc... Too much to handle for her in one day.... So she wants to take it slowly....
Fair enough..... We're experimenting here..

So... at the moment all's back at"normal" with the BTE's safely secured on her back....

Only thing to do is check if/when she will be upgraded to the nucleus 5, and if the earpieces she got are the right ones... (Thanks Dan for pointing it out..)

Ear-plugs for Lotte ... today's solution... worked..

This morning we adjusted the "tubes" to the correct length... and even though the BTE's are hanging OK... it's still a big thing on her ears.. Over to plan B... the battery/controller separated from the microphone/sender....

Lotte was happy to try the extensioncords.... and loved them. Comfortable at the ears, and she didn't mind the battery-packs/controller on her back.. 

So this is how she wore them the rest of the day..  I think it's still a novelty... Something "cool" for her.. We'll see how it goes in the next few days.

But it makes it easier for her to use the phone (no more grabbing the BTE from the shoulder, impossible to put back) and perhaps some better hearing outside... 

   

She still has to learn to put them in herself..... Not an easy task... 

Perhaps this will become a bottle-neck in the future.... She will be very frustrated when she can't get the mold in it's place...  We'll go to school with her and explain it to the teachers.... They need to know how to help her.. 

Ear-plugs for Lotte - The story continues....

Today - Friday -  Lotte got her ear-molds.... The ones we had made earlier..
Transparent with glitter in it... Great stuff... We didn't order it this way, but it was a great idea of the person that ordered it...

It took some time to fit the ear-molds & flex tube to the BTE.. but we managed.. The problem seems to be that the soft-plastic tube comes out from the side, and then has to go up to the BTE...

For us... it is not as secure as on the shoulder, so we are a bit sceptic still, but on the other hand... most kids wear it like this.... Guess we need to get used to it..
So does Lotte... She will need to learn to insert the earpiece, and then hang the BTE on the ear... Practice makes perfect... so that's what we will do tomorrow...

As can be seen below, the BTE is too big for her ears.

But there is the option to use cables to hang the battery-compartments on the shoulder with the processor and microphone on the ears.... Another experiment for tomorrow.....

Just wondering if Lotte is OK with having something on the ears AND on the shoulders.....

Ear-plugs for Lotte

Yep.... the first step toward carrying the BTE's on the ear instead of on the shoulders has been made.... Well, again a first step. The previous "step" ended in a broken BTE....

We planned to get a mold made for the plugs that are going to keep the BTE's in place,.... behind the ear that is...

Lotte's ears are not designed to have a BTE hanging there.... Some people have a little earlobe on the bottom which can be used to clamp on a BTE, but Lotte doesn't have that... The plug will do it for her.

We already prepared Lotte the week before. After that there was no way we were going to forget this appointment. Lotte was counting the days... Guess this is her way of having grip on the whole situation...
We would have done it last time in Oslo, but there was not enough time.. planes to catch ... So, we would do it at home...

Today was the day. I picked Lotte up from school went to the hospital..
After a good ear-cleaning.. (after all... it hasn't been used at all during the last 8 years. Was in pretty clean state.. :-) ) we went to the "making ear-molds" specialist...
Blue paste + White paste + rolling it between the hands, and then.... "injected in the ear followed by a 3 minute wait..... Lotte was fine with it all.... and demanded some pictures..

We'll see how it will go. I have the feeling that the novelty is driving Lotte at the moment. The real test will be her going to school with the BTE's on the ear.

It would be an improvement for her in the sense that she will have more control over the BTE.

At the moment she can remove the BTE from the pouches on the shoulder and change the settings but she can't put it back in the pouch. With the earpiece she will be able to just take it off from the ear and put it back again..

Now, it's waiting for the mail to arrive with the 2 plugs. Then we have to assemble the BTE to the plug, but should not be a problem..
We will keep you informed..
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Usefull links: Sports and CI - Earpiece Guide - Molds
(Thanks Dan..)

Pouches.. and the microphones

BEAM (See here) is Cochlears way to provide help in noisy environment. It uses two microphones.

Here it is shown that neither of them are covered when the BTE is in the pouch.

Still, with the pouches on the back, BEAM will be at a 90º angle compared to wearing it on the ear..

BUT.. with Lotte BEAM is not "on".. It's switched off in the software of the BTE.... so the second microphone is not in use...

Wish I could play around with these settings.. but then again, I would probably mess it all up in 10 minutes.. LOL

Stress and wear due to the cable of the coil.

The indention can be seen on the picture above

On the first picture, part of the seam is removed. On the second and third, a piece is cut away to prevent any stress.

However, the flap will close wrong. A modification would be needed for that

Adapting the pouch for a audiocabele.

Adapting the pouch for a audiocabele.

Showing the wear patterns on the pouches. Notice the indention on the new pouch from the coil-cable

Cables or headphones....

With the Freedom package there are the complimentary (for us at least) cables to connect to a audio-socket on a CD-player or other appliances..
It works.. but it takes time to put it on... Plus, the BTE needs to go outof the pouch (in Lotte's case) and hang on her ear. Not the favorite location in Lottes world.. And.. it will be connected to only 1 BTE. OK... with a splitter, you can get it to both, but you can forget about any stereo-effect..

So, we bought wireless headphones.... They will cover the BTE's when on the ear... Stereo sound... Yes..!!
Still, we have to get the BTE's on the ears, but then... Lotte loves it..
Next station.... make her listen to storybooks on CD's instead of watching TV....

But... back on the shoulders when she's done.....
'

New pouches..!!!

Came home yesterday from a visit to Holland. Party with grandma, with a good friend, visiting good friends, etc.
Great time, especially for the kids, reconnecting with the friends there, and discovering new friends.. and relatives.

BUT..
when at home Lotte went straight to our downstairs neighbours to say "hi" and got the mail of the last 6 days...
With... a package from Australia..!!

Her pouches had worn out. Had there been a cochlear logo on it, I would be sure it would have been visible through the fabric... at least at the places where is wasn't too dirty..
So, we ordered new ones with Kylie. Lotte got to choose them.. and the "Dora" definitely needed to be there...
In addition we chose two other sets... A yellow one.. (Easted is just around the corner..) and a black one mad of beautiful fabric..

Thanks Kylie for those. Great job making them..
For those readers that also enjoy the pouches on the shoulders (or their kids, or themselves)... order some with Kylie.. http://ci-pouches.blogspot.com/

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..

New way..

With the pouches on the shoulders, it can be awkward when the straps are thin.

The red elastic band with two clips on the end is actually used to clip winter-gloves on the manchettes of coats... But this is much more practical.

Here I used the safety-pin to put it on the elastic band and the straps... but since then I sewed pouches all the way at the end.. no more safetypins..

Trampoline time..

Well... we finally have one.... and the effect is there.... From 0 to 1 kids in the garden it grew to 9 in the first days.. slowing down to 2-3... Our own...But the appeal is there.. Even straight out of bed, before they got dressed they went out... That was reason for one of the many rules... Not before 11:00...

For Lotte it is wonderful, not just for her physically, like all kids, but because her classmates now come to Lotte's trampoline.. Visiting Lotte. A great experience..

For those that are wondering about the pouches on the shoulder, I attatched a video of Lotte on it. (.. well, pouches, these are "bags" really... These are pouches..)
Just wanted to show how Lotte is not thinking about being careful with her CI... They hang on the shoulder, and will be fine while playing. The coils stay on the head.. OK, helped by the hair keeping it there... but even without the hair they will stay on, or Lotte will have them on there in no time..
The wire will sometimes get around the ear-hook. Thought about just removing the complete hook, but putting the wire through the safetypin works as well..

BTE irritating you, falling of... Using the BTE on the shoulder..??

Have a look here, on Kyley's blog 

It's still a rough setup, but have a read through the blog on why the BTE's for her daughter are now on the shoulder..

btw.... "pouches" is a much better name than bags....
Then again... the ones we use looked like "bags" compared to these beautiful "pouches"...

Have to start using "pouches" instead of "bags".! :-)

End of the bags....??? Not yet..

Typical !
I'm explaining to people about Lotte's CI-bags, how she doesn't want them any other way, and then it happens..

She comes to me and says "Daddy, can the CI on the ears? I want to have a fat tummy."
She means - "a naked tummy" - no shirt. It's warm outside, and her sister goes without shirt, so obviously, Lotte wants to go like that as well.
However, she realizes the BTE's cannot be on her shoulders. But, being shirtless is an OK excuse to allow the BTE's on the ears.

So, to prevent changing the long for short cables, I made a pony-tail and put the cables through the elastic band as well... This way, they will not just fall off...

We'll see how Lotte likes it. Seems to be OK... Putting them back herself is not working for her. She has to ask someone else. No surprise there, she's never had them on the ears for more than 5 minutes, if that much at all.

And now no hassle with calling anymore on the phone. With the BTE's on the shoulder, when she wanted to use the telephone, we would transfer the BTE to her ear - with her permission of course.

Update:
She wore them continuously in the house, until we had to go out to the store. Then, she wanted to get a shirt on and hence, BTE's on the shoulder..

Oh boy..... what to do with little girls that know what they want ??

Lotte's CI-bags - A dissection !

Many people who see the bag Lotte has on her shoulders, and obviously like the idea, ask where to get them.

Well, we used to get them for free from our supplier... that is, until Lotte had been using CI for 3 years. Batteries and the bags were no longer free. So we changed to accu's (and loving it) and made plans to make our own CI-bags, since the asking price from the supplier is ridiculous.

So, I have dissected one of the old bags, and here they are for you all to copy them.

As can been seen, there is one piece of Denim, which folded together makes the bag. Another piece is attached to make the "lid". (Must be a nice way to make this 1 piece instead of two... ) Velcro is on the lid and the bag in order to keep it closed.

We then sew a safety-pin on the top of the bag, and "voila".. no more lost or fallen BTE's..

Have fun...

BTE's - behind the ear?

As most readers of Lotte's blog know, Lotte has nothing hanging on the ear.
Her processors - the BTE's, we never used the body-worn) are on her shoulders in two little bags, and they go straight to the coil on the head.

It has never been a problem for Lotte, or us. There's no problems in windy environment. The processor will be below the jacket. Free of wind and rain, and she will still be able to hear us. Probably better then when they would be on the ear.... wind will make a lot of noise.

The only time when she has it behind the ears is just before she goes to bed, or straight from the shower or bathtub, when she's naked.
And she's fine with that. BUT.... not when she is dressed.
She'll happily "allow" the BTE to be hanged on the ear when reading a book in bed (she slept with only her undy during the summer) but if there's any clothing on her, as in T-shirt, PJ's etc, she will refuse.

She's so comfortable with (and used to) the BTE's on the shoulders, that I sometimes wonder when she will want them on the ears.
I guess when she goes to school, becomes more aware of other children... who knows. Perhaps she will continue like this...

For the moment, we just continue with this system. Lotte wants to, and we like it as well.
No CI's falling on the ground. No CI's that need to be dug up from the sand-pit, from a pool, etc.... no processor getting wet, no harness, no lumps on her back,....
It's great!