Tuesday, 25 August 2009

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..
.... .....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. .........
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..


Laurie said...

A wonderful and informative post! CI users, parents, & professionals would appreciate this information. That is why I was happy and honored to help you! I love seeing Lotte's pictures! She looks like a very happy, well-adjusted child! And she speaks more than one language! Wow!

Hopefully you & I will get some more responses from other CI users about wearing the CI's. As far as I am concerned, there is really no "right" or "wrong" way to wear it as long as we can hear, right?

Hugs and blessings to you and your precious family!

Anonymous said...

I do wear my own BTE on top of my shoulder and it is better that way.But I always wanted to use the babyworn setup to see if that would be better.For the summer when I'm mainly in a swimsuit had to wear it on ear , lol.nowhere to pin the pouch.Weight is definitely an issue , and I don't see any difference into hearing except localization and rustling of clothes sometimes drives me nuts.I'm learning to wear only soft cotton clothes that aren't crisply ironed so that would n't rustle.

I do have the earlobe thing though and I'm curious to try that setup , but that for me provides to spend money, money I don't have , my insurance doesn't cover anything.it's 150€ for babyworn cord , plus an 30 for the Accu's retention pack and another 50 for the snugfit , and they do not let me to even try them to decide on a proper size.And I don't have the money , lol.

I am just thankful for Kylies generosity , although I've already lost one pouch and I need more.she definitely helped me.


tammy said...

I found your blog through Laurie's and loved this experiment! Our son Aiden was bilaterally implanted with Cochlear in February 2009. We had to pin the whole device to his shirt as well as he would not wear anything on his ears (I think he liked the break from hearing aids and was like, "no way am I putting something BACK on my ears!"). We did slowly transition to the babyworn set up and I HATE all the cords, which he just uses to rip the whole thing off time and time again. We're thinking of going back to wearing it on his shoulder, but are going to try the BTE set up first. That's just a lot of weight on a 17 mths old ears!

And BTW ... I don't have any earlobes either, neither does my daughter, and Aiden has small ones. My husband and oldest son make up for us not having any ... which they often remind us about in a very jokingly manner! LOL! It is a genetic thing.

Also, I wanted to mention my great grandparents came to the US from Norway. My grandma was 100% Norwegian. I hope to get the opportunity to travel there one day. I'd love to meet the people and see the beautiful country!

Mom to Toes said...

Fascinating about Lotte's lobes! Genetics amazes me. All the little quirks we don't notice until they are repeated on our kids!

Your post is so timely! At the insistence of Erin's ENT, I have been preparing a blog post detailing exactly how she wears her BTEs pinned to her shirt. He wants to direct patients of young children to the blog for instruction. He gave me all the credit, but I really have Lotte to thank! So I'm including a link to Lotte's site (and Kylie's) when I post it.

But, as confounding as kids can be, Erin has recently begun to request wearing Mini-BTEs on her ears on weekends and evenings when not in school. We had new earmolds made and secure them that way, but do not use any of the babyworn gadgets.

Today she asked to wear her BTEs on her ears to school for the first time. I was terrified to send a 4 year old to school (in the middle of a transition week where she will be in both her old and new classrooms throughout the day). But she did really well.

I've been watching to see how she is adjusting. If anything, it seems she is not hearing as well as she did. But that it likely because she became accustomed to turning her body a certain way to get the best sound. She always wore the BTEs higher up on her shoulders than Lotte, but it is still a bit of an adjustment for her.

If she continues to request the on the ear set up, I guess I need to get used to a whole new list of worries. I am thankful for Cochlear's One Time Loss Protection.

Great Post!

Cloggy said...

Yes, in the end it's up to Lotte to decide... but up to a certain level.
Lotte never gave the CI another thought until the last year or so. Before that losing the coil from her head (still attached to the BTE on the shoulders) would be of no importance. She would play on with 1 ear... With a BTE on the ear, this can mean losing the BTE. Then the task of finding it starts.. Sandbox, woods, grass.... etc.... Millions of possibilities...

Nowadays, Lotte understands the importance of the CI to her, and is "owning" it more and more. We feel that from now on, it can be her decision to have it on the ear. And still.... she's still a child. Within a day, she dropped it, or it fell of the ear, and it broke. Fortunately in Norway, it is replaced without problems, but this might not be the case elsewhere..

Li-Li's Mom said...

I'm a long time lurker and love your approach to finding the right spot for those processors. Li-Li has no earlobe "hook" as well and we've been on a similar journey! I, very unscientifically, think she's a bit of an advanced being, so these little evolutionary quirks don't surprise me :) .

I had long ago discarded the snugfit because of this earlobe anomaly, but a few months ago found a wonderful solution: we use a short coil, and attach her two processors via snugfit to her pony tails/ braids, even atop one pony on top of her head, depending upon the hairstyle of the moment. This is perfect for us: no weighty, floppy BTE drooping or dropping off the ear(they are wrapped securely around her hair), mics are pointed in the forward direction, so not a problem when on whisper or 'chaos' settings, and her hair isn't brushing up around or against her mic. And we get lots of compliments on her colorful, funky hairbands.

When she doesn't want her hair up, we slip the snugfit back on her ear and use a few barrettes to keep the coil in place even if the BTE flops ans swings loose. Or sometimes we just attach the BTE without snugfit to the side of her head with a couple of barrettes.

I don't know that I can get a good read on best sound from Li-Li, so Laurie's experiment was GREAT to read. I've tried using my monitoring earbuds to see if there's a difference in sound from place to place on her head, shoulders, etc. but can't really detect any change myself.=

Lily's Mom said...

There was research done on this subject two years ago and presented at a Wisconsin conference. Our hearing resource teacher told us they did not recommend the shoulder set up because of the significant difference in hearing. Can track it down if you are interested.

Cloggy said...

VERY interested..

So far, no-one could give us any reason that made sense or could be backed up.
So, that kind of information would be very valuable.


Vivie said...

Well I'm back a few months later..I did got the babyworn cord ( no snugfit though ) and the accu holder..

I want to share my thoughts on it..first of anything..you are right! Accu holder is TOO bulky.Wore it three days.then I put it into the Cochlear bag and I get it only when I travel.

what I did ? I still use the babyworn and I used one of Kylie's pouches.it was WONDERFUL.worked like a charm , and I can have all three options.with baby bte as I call it I feel like I can use anything and I hide the pouch inside my clothes.I rarely use the full setup now.I have a small box with the long coil , a spare short , and space for spare battery and I'm set.

I also tried toupee tape , Aiden's mom sent me some , but it didn't fit for one reason - my implant was set too low so I don't have anyplace to stick the BTE comfortably ( now I know why I used to feel sore sometimes ) so the baby bte - shoulderworn works better for me , and no more falling of CI.

I don't see much hearing difference between the getups but that might be b/c brain is adaptive.

As for the article I'm interested too, could you email it to me?..I also am interested in some getup I saw recently.Headbands with the full bte on it pinned somehow.and I like wearing headbands when I have long hair.Maybe Lotte could try these too! if you're interested I'll give you the link.

Cloggy said...

Thanks Vivie,
Always good to get some feedback from the adults...

Had forgotton about that article, but just contacted Lily's mum....
Will send the good dtuff to you and the rest..

(Some) Milestones

  • 2013-08: Grade 6
  • 2012-08: Grade 5
  • 2011-08: Grade 4
  • 2011-03: BTE's on the ear
  • 2010-08: Grade 3
  • 2009-08: Grade 2
  • 2008-08: Mainstream School (6y. old)
  • 2006-10: All-hearing Kindergarten (4y. old)
  • 2004-11-22: CI activated (27 m. old)
  • 2004-10-04: Bi-lateral CI (26 m. old)
  • 2003-08: Deaf/HOH/CI Pre-school/"DEAF" Kindergarten (12m. old)
  • 2003-07: HA's fitted (11 m. old)
  • 2003-06: Diagnosed deaf. Start sign-language (10m. old)
  • 2002-11: Suspicion loss of hearing (4 m. old)
  • 2002-08: Born - A fierce LION
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