Lotte is doing GREAT..!!

... she's growing and growing.. both physically and mentally. It's a joy to observe this little girl taking more and more control over her life.
Doing sports (handball), playing with friends in the street and at school. She's claiming her own life more and more.

Same with CI.. It's no longer something for her that's just there without hardly noticing it, it's becoming more and more a tool that she is getting to know..
Not just thinking about where to put it, but also controlling the software is becoming part of her. (Changing to another program when sounds are loud..)


The BTE's are now on the ear almost all the time. She even played handball with the BTE's on the ear last Monday, showing that she is confident that they do not fall off AND more importantly that she knows she has someone to put it back.
She still can't do it herself. With her hair in the way, she hasn't figured out how to do it.. (Even though I think the main reason is... She doesn't have the patience to try & learn.... There's someone else around that can do it for her..)

Some days ago she came in and announced that her friend helped her to put the CI on the ear... the plug in the ear... meaning that Lotte is secure with the knowledge that someone at school can help her..
(We still have to show the teachers how it's done... )





  
 

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/

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!

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.

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.

Listning in before bedtime..

Bedtime again,

Lotte got orders to get upstairs and put on her pyjama's. We remove the little BTE-bags from her shoulders so that she can take her sweater etc. off, and up she goes.
Up she goes, and - after a while - down she comes down stark-naked. Talking on the stairs to us about reading. (remember, she cannot hear anything now)
We tell her to go back upstairs and get dressed... of course she comes down and comes to us... what parent can resist their little (naked) angel.... we can't..

So, we explain again what she should do. She tries to read our lips but realises she's missing too much.
Then, she picks up the CI (BTE in the bag and the coil) that we left on the table after we took it off, and puts it on. Now she can hear again.. !!
Imagine this... this little angel with the coil on her head, and the BTE dangling from it on a 6" wire. It was great and she enjoyed it as well. Picked up the second one and there she was, with a big smile...

It is the first time she has done this. Normally, in the morning, she cannot reach the BTE's and even if she does, someone has to pin them on her colothes.
Now, she just took them and "put them on"....

Pressing the little button and Yes .... Sound !!

Over the last two years, since the activation of Lotte's CI, Lotte has gradually realised that her working ears are on her shoulder... or at least, they need to be attatched above her ear.
This realisation has slowly grown.
In the beginning she would be happy to run around with her coils loose on her back . A BTE that stopped functioning (e.g. low batteries) would not be a problem. A soundless environment has never bothered her, and it still doesn't.
Later on, especially the last half year, the lack of sound, or perhaps better said, communication with her surroundings, does bother her, and we never see her with 2 loose coils. Sometimes one falls off and she won't notice, but normally she puts them on herself quickly.

IN the last month, in the morning (Lotte being awake before us... ), she will pluck them from the medicine-cabinet (which is steel, so the CI's stick on it due to the magnets in the coils) and comes to us to have them put on.
The way to do this was to switch them on, check the program, then the "volume" and then pin them on her shoulders (don't worry, by that time she wears some sort of clothing. :-) and finally attach the coil on her head. Only then sound would come in.

This weekend I changed that routine, and actually showed her for the first time that her CI gave her sound.
I first attatched the coil, and she realised that that did not help.... no sound.
Then I showed her how I pushed the button to turn the BTE on... and her face lit up..

YES !!! sound !

Only then I put the BTE in the bag on her shoulder, after checking the program and volume.

The other BTE, I had her turn it on herself, and again it was great to see her face light up with excitement. The realisation that it was her, by pushing that little button, that gave her sound...

In a way this is a new era, where Lotte realises that sound is something that comes through a thing that needs to be turned on.

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.)

Mapping

Update regarding Lotte,

Yesterday we - my wife and me - went to Oslo to get a new mapping for Lotte. The new processors were not yet available so that was postponed. Too high demand and not enough new processors. So we'll continue with the "old" ones.

I asked then to go up on the power. Actually, Lotte never has felt any discomfort so I told them to feel free to "turn up the volume".
Went quite a bit higher than before and one of the programmes was set for listning to music. That went fine. No discomfort at all. (I decided no to push them to go higher...)
Only when she had both CI's activated simultaniously she reacted strongly. More surprise than discomfort but the technician wanted to go just a little lower.

After the first mapping, which took 1-1/2 hours, we went out and it seemed that she talked more clearly, repeated words more accurately. Kind of strange after such a short time, so we regarded it as luck. But there were some other words that were more clearly. It's amazing.
On a test they did, copied from German - English tests she allready scored 32 out of 35. Not sure if it is MAIS or ACS-R or simular. (Does anyone have those tests available so I can try them?)

The second mapping went fine as well. No big changes. The "music" program was set as "loud" as the "speech" program. (It was set a bit lower initially)

She was great to travel with. Quite a change from 3 months ago when she had trouble sitting still. (Who can blame her, 50 minutes plane, 30 minutes train, 15 minutes taxi, quite a long time for a three-year old.)

________________________________________________

Here some where she's signing with my wife. Note the BTE's in little bags on the back. She has them on both sides.








Here's another view of the bags with BTE's on her schoulders...

(AllDeaf)

Lite "mellom"rapport om Lotte Sofie

Godt nyttår!

Her har det skjedd mye. Nå er det halvannen måned siden Lotte fikk satt på lyd. Hun er kjempefornøyd! Det første hun spør om morgenen når vi kler på henne er å få satt på CI. Lotte har begynt å snu seg etter navnet sitt, spesielt når mor eller storesøster roper (ikke så mye når far roper). Etter to uker begynte hun å vise tegnet for "hør" når hun ble oppmerksom på bestemte lyder. Det kunne være klirring av bestikk, tallerkner, alarmklokke på komfyren, lekepiano, lego, brikker av puslespill. Ganske snart også når hun ikke så hvor lyden kom fra.

Når hun blir oppmerksom på en lyd lyser hele ansiktet av glede, det er helt fantastisk for oss foreldre å være vitne til. Hun har begynt å herme ordet "mamma", og gjør hver gang tegnet for mamma på nesen (enten hennes eller min) så snart hun hører ordet, også når hun ikke ser at jeg sier det. I barnehagen i samspill med spesialpedagog hermet hun etter "ssssssssssss", og i dag så sa jeg "meg", og hun gjentok "ei".

Hun kommer ofte  til oss når magneten har løsnet, og har CI-en på absolutt hele dagen, å ta på og av er det første og siste vi gjør hver dag.

Det er lagt ved noen bilder som viser hvordan taleprosessorene er festet med de nye posene som vi fikk tilsendt av medisan. Vi er veldig fornøyd med resultatet, de sitter godt og stødig, og er praktisk og lett å feste/ fjerne.

Vi opplever at begge prosessorene - men mest høyre side - ikke er helt til å stole på. Etter at de har vært slått av og man slår de på igjen, så er det ingen selvfølge at de virker. Som oftest er det mest høyre siden som ikke virker, men hvis vi enten tar ut batt. og setter de på igjen eller slår av og på raskt etter hverandre et par ganger, så funker det igjen. Det får oss til å lure på hvor pålitelige prosessorene er utover dagen?

Det er først og fremst gleden hun opplever når hun hører en lyd, som er det mest fantastiske for oss å se. Det er tydelig at dette gjør noe med henne, noe som er veldig positivt. Hun har alltid vært en strålende liten jente, men hun har fått en ekstra glød!

Med vennlig hilsen,

Mor til Lotte

---

Pre-pouches contraption... 2004-11... Hookup...

Here an example on how we experimented with attaching the BTE. This pen-holer did it's job.. but not as good as the pouches we made..
Later, I cut off the fingers of a glove, put the BTE's in each of them, and attached them on the shoulders.... and it's still like that..

 

She's using the Nucleus here.. but the Freedom is implanted.. The Freedom just came out, and the hospital didn't have them any more... She got the Freedom 6 months later .. if I recall correctly..

Isn't she cute.. :-)