Lotte Sofie - Born august 2002, hearing since november 2004

Another milestone... for us this time.

2012-02-15T12:00:00.002+01:00

As parents of a child with CI, you tend to be the expert on many subjects when talking to people around your child. In Norway, there is lots of support, but in order to get it, one needs to show the different offices what CI actually means. In meetings we have to emphasise on the traps.. how children can fool you.. making you think they understood.. (I often used the example that the correct answer to any question ending with "isn't that correct" is "Yes"...

CI is still a new technology. Just a couple of years ago.. OK, couple of decades, a result where the patient would be able to perceive sound was a success. Still, professionals will not guarantee that a telephone can be used by CI-operated people..
There are some similarities with hearing aids, but many more differences. In technology, ability to hear... but like someone said... "Nowadays, CI is not about hearing. It is about language."

Yesterday, we had a meeting with a new - private - organisation that is going to support Lotte and Lotts's school. We have been unsatisfied with the previous (state-owned) services and requested the new - private - services. Our request was granted..

And here's the milestone: We didn't have to be the experts.!!!

We noticed that the two specialists (2..!! not 1.. ) were the experts regarding children with CI... We could relax and see how they took charge. For the first time... A wonderful feeling. And a realisation how much effort / energy it has taken to do this every time.

The professionalism was wonderful. They made clear that they wanted to observe Lotte for most of the day. (Not just a couple of hours). That they want all the teachers involved with Lotte in the discussion afterwards. (not just 1 or none of them). They want the director of the school to be present, the special education teacher. Anyone directly involved with Lotte.. they want him/her there..

They noticed how all the requirements for good hearing (and reading lips) are in place in the classroom, but how important it is for the teachers to realise that they need to check if Lotte understands. If Lotte hears..

Having an audiologist AND a speech therapist observing Lotte and giving feedback was wonderful. Getting the feedback that "all is in place and Lotte is doing well" (as the conclusion was with the other service) is easy.. but here we get an additional "remember that", and "make sure that", "this is how you can"... etc.
(And in a smaller session, with math problems containing sentences, the teachers got to see a wonderful example how it's the understanding of language that was the problem.. not the hearing..)

Knowing that Lotte is at the same level as other kids in her class is wonderful to hear... but that doesn't mean it cannot be better. If she had been in the top of the class had she been hearing, then we need to make sure that she gets all the support to be able to get there being deaf.. with CI.

With the statistics of children growing up deaf being so bad - (internationally speaking) having a deaf child in mainstream school, and keeping up with others is wonderful to hear. It's what was not guaranteed at the time of implanting, but what was hoped for. Seeing those hopes being exceeded makes one humble.

But these experts showed us that it's OK to expect more, to demand more. And - even more important.. they are the experts that will guide us through that process. Us, the school, the teachers and other people around Lotte.

So, it was wonderful to be Lotte's mom and dad in that meeting. Not having to explain to the teachers and other professionals what to look for, how to handle something...

And how was Lotte doing..??

She's doing great. Socially she's doing well. She is good at standing up for herself. Very independent (but.. very good at hiding her problems as well.)

E.g. The "experts" noticed how there was a discussion in the dressing-room before gym class about 2 tragedies that happened last summer. Lotte didn't participate in that "discussion" as there was too much noise. There was probably no possibility for her to understand what was being said when 10 girls all talk at the same time,... An important observation, showing the limits of what Lotte can understand. And how she is handling the situation.. In this case, she stood somewhere else, not trying to participate. It shows that Lotte has her own strategies for coping with her lack of hearing..

Some discussions are not worth the energy, so she will stay out of it. Sometimes she realises it's important to know what's happening, and she will ask for the teacher to repeat the message. Sometimes people come over to observe Lotte and Lotte will introduce her friends to them.

Lotte is eager to know about things.. fortunately. She is eager to do her homework, and proud to show us the results of her work.

The latest tests in Oslo show that she can hear close to normal hearing in silent surroundings. When noise is added her ability to hear drops.. (See testresults below)

Her ability to understand sentences has grown tremendously, in sync with her grown vocabulary.. Of course.. one needs words in order to understand context. Just like we do not hear every word of a sentence, and fill in the gaps with experience...

And with language so important... we are reconsidering letting her join her sister joining the theatre course..
We know the teacher there, and with the support we got yesterday, we feel confident that this would be a tremendous help for Lotte..

(OMG... 2 actors in the house..)

Milestones, Mountain-ranges and views

2012-02-04T08:52:00.003+01:00

Milestones....
They happen all the time, and like I have said on the blog.. sometimes they fly by, and sometimes they stand up in your face... (well, I said something to that effect..)

Last Thursday was the yearly checkup for Lotte. A great day out since we (actually, this was the first time I couldn't be there..) have to fly to Oslo, then take a train & tram to the hospital where the center for the check-up is located. One of Lotte's teachers joined Lotte and her mum.

This time, for the first time, it was Lotte who was in charge. She has grown so much lately, that my wife had no problem just sitting back and let Lotte do all the talking. And the specialists were excellent at directing everything to Lotte.
It must have been a wonderful day for Lotte because she was 100% focused the hole time. While adjusting the settings on the CI/BTE's, when finding the noises that she doesn't like (flushing the toilet) and trying to do something with that, she got it, and gave excellent feedback.. While doing speech tests in noisy environments and while doing comprehension tests. she did great. Her teacher was very impressed with Lotte..
But it's a great day out. She loves to go there and thrives on the attention, but this time, at the same time she realises the importance of the day.

In all, this day marks a beginning of Lotte taking over the "CI business" from us. She can accurately give feedback about how and what she hears. She understands the tests they are doing. She understands that there are different programs on her BTE she can use, because she was mentally there when they made them.
Of course life goes back to normal for her as soon as she was back at school, and she won't be playing with the different proframs, but she knows they are there.
Also, with one of her teachers being there, there is someone at school that will recognise difficult situations and can tell Lotte to switch to another program.. or, she might identify that Lotte forgot to switch back to the default setting.

Anyway.. It's a huge milestone. It didn't fly by. We didn't bump into it. It was like the mountain range in the distance that we finally reached.. We knew it was there, and were cruising along towards it. Now, having reached it, we can enjoy the view forward, and back...
It's a great view...

(btw.. Lotes mom promised to post an account of the day as well.... so stay tuned..)

HINT (Hearing In Noise test)

2012-02-03T11:45:00.000+01:00

Here's Lotte's test result plotted in an example graph.

Understanding of sentences grows with age as understanding/vocabulary grows, hence the rising line up to 12-13 years of age. Lotte's score 14 months ago is also plotted (Age 7½ - November 2010) and last results (Age 9½ - Feb 2012) The improvement is clear. Also that she is still catching up.. Whether the gap is due to actual hearing, or understanding..r both?? The future will tell....

The official graphs look like this: (Coloured area on the right is Normal hearing adults)

Here one can see on the left how Lotte scores close to perfect without noise. (from 69% 14 months ago) and how (on the right) she improved from her 2010 results in noisy environment

In writing (Norwegian):

Translation:

Lotte was wearing bilateral CI when she was tested with one-syllable words and HINT sentenses.

One-syllable words HIST: 40 of 44 = 88%

HINT sentenses:

I silence: 98%

In noise from the front: STN= 5.7 dB with v=2,0dB and STN= 3.3dB with v= 2,0dB

In noise from right: STN= 2.2 dB with v=1.5dB

In noise from left: STN= -0.2 dB with v=2,2dB

-----------------------------------------

From the www..

What is the HINT test?
The Hearing in Noise Test (HINT) measures a person’s ability to hear speech in quiet and in noise.
During the test, the patient uses both ears together (binaural hearing) to repeat sentences. Binaural hearing ability is essential for communication in noisy settings and for other aspects of functional hearing, such as sound localization and recognition of environmental sounds. In this test, the patient is required to repeat sentences both in a quiet environment and with competing noise being presented from different directions.

What is involved in taking this test?
The HINT battery consists of four test conditions. For each test, speech is located directly in front of the subject at 0° azimuth, and all sound sources are one meter from the center of the subject’s head. For each of the four conditions, the subject is required to listen to a sentence and repeat it. The four test conditions are:
(1) sentences with no competing noise,
(2) sentences with competing noise presented directly in front of the patient,
(3) noise presented at 90° to the right of the patient, and
(4) noise presented at 90° to the left of the patient.

In all conditions, the competing noise is presented at a steady loudness of 65dB(A). The loudness of the sentences presented is varied throughout the test, depending on whether the patient repeats it correctly or not.

How is the HINT test scored?
The tester scores each sentence repeated as either correct or incorrect. All words in the sentence must be repeated correctly. At the end of the test, a signal-to-noise ratio (SNR) is generated for each test condition. A signal-to-noise ratio equals how loud the sentences needed to be turned up above the noise floor so that the patient could repeat them correctly 50% of the time. For example, an SNR of 5dB indicates that the sentences had to be presented at 70dB (or 5dB above the 65dB noise floor) in order to be repeated correctly 50% of the time. The higher the SNR, the more difficulty the patient has hearing in noise. The HINT test is scored as a “pass” or “fail” in each condition and the cut-off criteria are based on the scores from a group of more than 50 subjects with normal hearing. These scores were provided by House Ear Institute who developed the HINT test.HINT test results show three things:
Subject’s signal to noise ratio threshold (e.g. 5dB)
Subject’s threshold as a percentile in reference to the normal distribution of the data (e.g. 95th %ile)
Subject’s maximum percent change in intelligibility. This is the predicted maximum difference in intelligibility in reference to the mean normal performance (e.g. the subject’s predicted intelligibility is 23% poorer than normal hearing intelligibility)

Tips: Pre- & post- operation

2012-01-09T10:05:00.005+01:00

A nice comment in the previous post.
From parents whose child will have bilateral CI (the standard in Norway) in February. In the comment, the request for more tips "pre- and post- operation..
Brings back memories... but with memories the problem is.... It fades...

So, first advice would be to start recording on paper, computer, video what happens NOW. Don't wait with it. Any progress after the CI has been implanted and activated is relative to the current situation..With "hearing" being the change, I would advice to make lots of video recordings of your child with how she is behaving now. the way she communicates now. Do you and your child use signs? Catch them on video. In the near future you might no longer be using them.
Lotte used to make loud, high pitch noises when being happy. Really annoying for people around (we were once asked in a restaurant to do something about that, but we couldn't..). I don't recall having a video of it, so the sound is lost forever. Wish I would have started a blog at that time, capturing that period, but I started this blog after he had the CI. earlier posts were from things we wrote down before the blog...

With that, you have the second advice. Don't just write it down, but organize it. In a website, a blog, a folder... So that you have access to it. Nowadays it's made so easy with all the blogging sides around.. Any picture and video can be uploaded and be part of your journey with your daughter. And not just for you. Also for your family and for other people that are in the same situation.
Like this blog. Essentially it's for us now and for Lotte later in life but the more people enjoy it the better... The good thing about the blog is that especially video is actually accessible. Many videos are on tapes, and we haven't seen them in years. Stored in some dark corner of the house after the video player broke down. Had they been on a blog, we would have had more possibilities to look back.

Third advice is regarding the time after activation. We didn't take the advice to stop using signs with Lotte. We refused to stop communicating with signs but used then together with sounds/words. We used the skills she had to teach her to hear and listen. It takes a while for the brain to realize the new input. Using sounds is of course essential, but we always accompanied them with the signs where possible. It didn't take long before Lotte herself would drop signs and use sounds only... Of course there has to be progress. When you keep using sign consistently there's less incentive for the brain to start learning to hear, listen.. The main reason one chooses CI is to give the ability to use speech as a way of communication.. That needs to be the overall goal..

Fourth advice would be to get in touch with other parents in the same situation. Easiest is via the internet. The yahoo group "CIcircle" for example (Now website www.cicircle.org) is great for that. Lots of people sharing their thoughts and giving advice. A great place to start. But there are many other message boards that do the same thing. a search on the www will reveal them.Of course there are many other blogs like this one, with children in different periods of their CI journey. There are many listed in Lotte's link on the side, and any blog will have links to other previously unknown blogs..

Fifth advice would be to talk a lot and read (aloud)a lot to your child. Lotte had never heard so every sound was new. Like with all new input.. one needs to experience is before one can use it. Learning a new language one would listen to it before starting to use it. I don't recall the numbers but a words needs to be heard 100's of times before a child will start using it.. So... Speak a lot. Just babble along. It all needs to go into the brain before anything comes out...

Six... Lotte was the second baby to have bilateral CI in 1 operation (the first with Cochlear Freedom). Carrying 2 bodywork processors would be ridiculous for a toddler, so instead the BTE's were used. They were too big to be carried on the little ears so they were put in little bags on her shoulders. This worked out so well for Lotte and for us that we have use this solution for a long time. It gave freedom to Lotte, since she would never be bothered by the heavy BTE's behind the ears (with other children sometimes hold in place with wig tape, or earplugs) and we never had to worry about losing them. (Lotte would not notice sometimes that the coil would fall off... Especially when caught up in playing..)
I'm not saying that one needs to use this system. I'm just saying that we used what worked for us. We were pushed to put the BTE's on Lotte's ears, but when we asked them "why?" there was never a clear answer. Most parents had the BTE's on the ears of their child, and it worked... We were the exception..

Seven.. Pre-operation... Lotte came out of the operation without problems. Not living in Oslo we had to stay in the hospital for some days. Very exhausting with a child that feels fine and wants to play.. Make sure there's enough to do. For the child and especially for you. (writing a blog perhaps...)
There must be more, and actually, I recall that on the messageboards there are better answers that this one..I will add some links when I find them... and I hope other people will comment with their advise so I can copy them into this post..
AH,, just remember something:

Eight: ... difficult as it is.. try to become experts. Those annoying parents that ask too much information to the doctors... Read & Ask.. In time you will become experts on CI for your child.. You WILL know better than the medical staff helping you. And you will notice that some people have no clue... and that's OK. The medical staff doesn't have a child at home with CI. You don't have the medical training for the details... In the end, you can tell THEM a lot about children with CI..We did this with the way we had Lotte's BTE's in the pouches.. We knew it worked. She had no problem hearing and learning to speak, and the medical staff couldn't explain why they needed to be on the ears... so... they stayed on the shoulder because WE knew it worked for Lote and for us..

Where to start..

2011-12-19T06:30:00.000+01:00

Lotte has made a jump again... indicated by erratic behaviour, being tired like other times she grew mentally again.
Suddenly she is taking more control of her life. It's wonderful to see.
Her vocabulary is still improving. It's noticeable that with her growing mental capacities she get's jokes quicker. She is anticipating in the conversation.. making small, to the point remarks and replying in ways that were not there 3 months ago..Smart comebacks etc... Wonderful..

Socially she's busy with friends that she invites and/or visits. With any other child that would like to go to a friend and asks to call her friend, we would reply that she can just go there... With Lotte we are happy for her to use the phone. She loves to use it, and has no problems with it.
Appointments are made to meet at different places, invitations are sent, and when she's out, she has her mobile phone with her to call us to ask when she needs to be home... She uses it well..

At school she is keeping up, despite the time she spends playing outside. it's a small dilemma... Homework or social activities... The social part often wins...
But she likes to do homework... probably because of the respect she has for the teacher... The teachers will is law..!.
She seems to have the brain for languages. Like her mother...
A week ago we had a long conversation in English. She now has enough vocabulary to make short sentences and loves to show her capabilities.
Math is a little problematic.. The tables 1-10 go in slowly, and probably by photographic memory.. But she's not the only one in her class... There are many other children that have the same problem... Guess she doesn't have the brain for math... yet... It will come...

Otherwise.. Lotte uses different languages for different activities as we discovered lately..
A good example is when she comes from school. When asked about her day (in Dutch) she will be brief. To the point. When our (Norwegian) neighbour asks, she starts chatting away and keeps on talking... Many stories..Obviously, school experiences need to be discussed in Norwegian...
Stories about the vacation in Holland will be in Dutch... Exciting to watch these kind of developments...

Time for X-mas with her grandmother from Holland staying with us.
Seeing her chat away with her is looking at the everyday wonder that CI provides.. Magic.

A peek in the past and future..

2011-10-31T20:40:00.002+01:00

5% the cochlear implant...5% the follow up....and 90% parental involvement.

A house full of music..

2011-10-29T13:18:00.005+02:00

No words.... (except these five..)

And for those who want to sing along with Lotte on the piano... Here are the lyrics..

(Barn av Regnbuen - Child of the Rainbow)

Wake-up call

2011-10-20T09:04:00.001+02:00

A few days ago, while sitting at the kitchen table after school, Lotte put up a grave face and began to tell, "Mummy, today at school we learned about [......]". We could'nt understand the last word. Asked her to repeat it. "We learned about [.......] in the park behind our house. You have to stay on the path. If the children do not stay on the path and go walking in the woods, they can get killed".

?

Bombs. The [...] word was 'bombs'. This is one of those moments where as a parent you have to think FAST. Luckily, having read the newspaper the day before, we remembered suddenly that there was going to be huge campaign in Norway for land mine victims in Cambodia a few days later. We were able to explain to Lotte that this was in a different country, that there was no need for her to be afraid. At first she didn't believe us, because this was told at school! The ultimate truth...... But after a bit of persuasiveness it seemed like the best option to believe us. We also took contact with the teacher and explained what had happened.

This is a perpect example of how Lotte gives meaning to the parts and pieces of spoken language which she is able to pick up. It is like this giant puzzle with holes in it, where she needs to fill in the gaps in order for her to give meaning to the story. Needless to say, this is not always on par with reality. Even though we know this, we let ourselves get fooled again and again, because Lotte is excellent at hiding that she has not understood. No matter how well Lotte is doing, stories like these are essential to make us understand that we have to stay aware of this, and pay attention.

Imagine what this idea about bombs in our neighborhood could have meant for Lotte, if it had been allowed to develop in her head over time. Ever so glad she is the gabby, talkative type and wears her heart on her sleeve!!

Wait.. I'll turn on the sound...

2011-08-29T09:07:00.004+02:00

With the introduction of the iTouch, Iphone, IPad etc. in our house, the number of applications increased as well. One of the applications we have downloaded is a Norwegian Signlanguage Application..
We used signlanguage - well, signs, when Lotte couldn't hear, and in the time she started wearing CI. So, out of interest, we had a look at the application.
It's very good. Many words in alphabetical order with a video attached showing the sign. Obviously, it's "sign", not "signlanguage" but still good to have..
Of course, we showed it to Lotte who is interested in learning the signs... She loved it... part of "loving anything that moves on a touch-screen" but she is very interested in signing...

So.. Lotte wanted to have a go at it and loved it. Entering the words, looking at the video and repeating them to us - for us to guess what it meant... Great game..

Suddenly she say's "I'll turn the sound on so we can hear what the lady says." only to find that there was no sound with this application... She was so surprised.....
Then she smiled, looked at us and said.. "Yeh.! I can do that as well". Took off her CI's and continued playing with the application for a while..
Not too long... there's not enough sound to keep it interesting....

"Music is what feelings sound like."

2011-07-29T16:36:00.006+02:00

Lotte scored a T-shirt today..... She picked this one out of the rack... and we couldn't refuse...

We're sure she doesn't understand the significance of the statement on the shirt.. and that's fine...

But there's a lot in that little sentence.. "Music is what feelings sound like."

For us, it's straightforward true. We are moved by music. We get happy, we get sad and many "colour" - better said "notes" - in between these two..

And especially in this last week, with the terrible events in Norway this sentence becomes even more true.. There are many songs, poems & lyrics that "speak" the feelings of a whole nation in grief. A whole nation showing their love for each other in this time of sorrow..

Below are some examples of these songs....

I would like to say... "Enjoy", but that would be misplaced...

I will say "Be Amazed"....

The song below was sang in the Oslo Cathedral... A poem by Norwegian poet and writer Nordahl Grieg, set to music.

Of course, the song is in Norwegian, but if you're interested read this English information first - there are translations of the lyrics - and then listen to this one from a long time ago... .

... or this one... where a new generation is repeating the words... in a new era...

And there is more... much more.....

2 Video's...

2011-07-22T06:26:00.002+02:00

Thanks to: http://buzzsjourney.blogspot.com/2011/07/great-video.html

As good as it gets....

2011-05-17T15:19:00.002+02:00

Again.... the camera was held on it's side....
Ah well.. just put the screen on it's side and everything is back to normal.....

Little girls in dresses picking flowers in the sun.... As good as it get's....

How it works....

2011-04-17T15:29:00.001+02:00

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Have to love science....!!

2011-04-03T08:27:00.000+02:00

New discovery may improve cochlear implants for deafness
Published on March 28, 2011 at 3:53 AM

University of Utah scientists used invisible infrared light to make rat heart cells contract and toadfish inner-ear cells send signals to the brain. The discovery someday might improve cochlear implants for deafness and lead to devices to restore vision, maintain balance and treat movement disorders like Parkinson's.

"We're going to talk to the brain with optical infrared pulses instead of electrical pulses," which now are used in cochlear implants to provide deaf people with limited hearing, says Richard Rabbitt, a professor of bioengineering and senior author of the heart-cell and inner-ear-cell studies published this month in The Journal of Physiology.
The studies - funded by the National Institutes of Health - also raise the possibility of developing cardiac pacemakers that use optical signals rather than electrical signals to stimulate heart cells. But Rabbitt says that because electronic pacemakers work well, "I don't see a market for an optical pacemaker at the present time."
The scientific significance of the studies is the discovery that optical signals - short pulses of an invisible wavelength of infrared laser light delivered via a thin, glass optical fiber - can activate heart cells and inner-ear cells related to balance and hearing.
In addition, the research showed infrared activates the heart cells, called cardiomyocytes, by triggering the movement of calcium ions in and out of mitochondria, the organelles or components within cells that convert sugar into usable energy. The same process appears to occur when infrared light stimulates inner-ear cells.
Infrared light can be felt as heat, raising the possibility the heart and ear cells were activated by heat rather than the infrared radiation itself. But Rabbitt and colleagues did "elegant experiments" to show the cells indeed were activated by the infrared radiation, says a commentary in the journal by Ian Curthoys of the University of Sydney, Australia.
Curthoys writes that the research provides "stunningly bright insight" into events within inner-ear cells and "has great potential for future clinical application."

Shedding Infrared Light on Inner-Ear Cells and Heart Cells
The low-power infrared light pulses in the study were generated by a diode - "the same thing that's in a laser pointer, just a different wavelength," Rabbitt says.
The scientists exposed the cells to infrared light in the laboratory. The heart cells in the study were newborn rat heart muscle cells called cardiomyocytes, which make the heart pump. The inner-ear cells are hair cells, and came from the inner-ear organ that senses motion of the head. The hair cells came from oyster toadfish, which are well-establish models for comparison with human inner ears and the sense of balance.
Inner-ear hair cells "convert the mechanical vibration from sound, gravity or motion into the signal that goes to the brain" via adjacent nerve cells, says Rabbitt.
Using infrared radiation, "we were stimulating the hair cells, and they dumped neurotransmitter onto the neurons that sent signals to the brain," Rabbitt says.
He believes the inner-ear hair cells are activated by infrared radiation because "they are full of mitochondria, which are a primary target of this wavelength."
The infrared radiation affects the flow of calcium ions in and out of mitochondria - something shown by the companion study in neonatal rat heart cells.
That is important because for "excitable" nerve and muscle cells, "calcium is like the trigger for making these cells contract or release neurotransmitter," says Rabbitt.
The heart cell study found that an infrared pulse lasting a mere one-5,000th of a second made mitochondria rapidly suck up calcium ions within a cell, then slowly release them back into the cell - a cycle that makes the cell contract.
"Calcium does that normally," says Rabbitt. "But it's normally controlled by the cell, not by us. So the infrared radiation gives us a tool to control the cell. In the case of the [inner-ear] neurons, you are controlling signals going to the brain. In the case of the heart, you are pacing contraction."

New Possibilities for Optical versus Electrical Cochlear Implants
Rabbitt believes the research - including a related study of the cochlea last year - could lead to better cochlear implants that would use optical rather than electrical signals.
Existing cochlear implants convert sound into electrical signals, which typically are transmitted to eight electrodes in the cochlea, a part of the inner ear where sound vibrations are converted to nerve signals to the brain. Eight electrodes can deliver only eight frequencies of sound, Rabbitt says.
"A healthy adult can hear more than 3,000 different frequencies. With optical stimulation, there's a possibility of hearing hundreds or thousands of frequencies instead of eight. Perhaps someday an optical cochlear implant will allow deaf people to once again enjoy music and hear all the nuances in sound that a hearing person would enjoy."

Unlike electrical current, which spreads through tissue and cannot be focused to a point, infrared light can be focused, so numerous wavelengths (corresponding to numerous frequencies of sound) could be aimed at different cells in the inner ear.
Nerve cells that send sound signals from the ears to the brain can fire more than 300 times per second, so ideally, a cochlear implant using infrared light would be able to perform as well. In the Utah experiments, the researchers were able to apply laser pulses to hair cells to make adjacent nerve cells fire up to 100 times per second. For a cochlear implant, the nerve cells would be activated within infrared light instead of the hair cells.
Rabbitt cautioned it may be five to 10 years before the development of cochlear implants that run optically. To be practical, they need a smaller power supply and light source, and must be more power efficient to run on small batteries like a hearing aid.

Optical Prosthetics for Movement, Balance and Vision Disorders
Electrical deep-brain stimulation now is used to treat movement disorders such asParkinson's disease and "essential tremor, which causes rhythmic movement of the limbs so it becomes difficult to walk, function and eat," says Rabbitt.
He is investigating whether optical rather than electrical deep-brain stimulation might increase how long the treatment is effective.
Rabbitt also sees potential for optical implants to treat balance disorders.
"When we get old, we shuffle and walk carefully, not because our muscles don't work but because we have trouble with balance," he says. "This technology has potential for restoring balance by restoring the signals that the healthy ear sends to the brain about how your body is moving in space."
Optical stimulation also might provide artificial vision in people with retinitis pigmentosaor other loss of retinal cells - the eye cells that detect light and color - but who still have the next level of cells, known as ganglia, Rabbitt says.
"You would wear glasses with a camera [mounted on the frames] and there would be electronics that would convert signals from the camera into pulses of infrared radiation that would be patterned onto the diseased retina that normally does not respond to light but would respond to the pulsed infrared radiation" to create images, he says.
Hearing and vision implants that use optical rather than electrical signals do not have to penetrate the brain or other nerve tissue because infrared light can penetrate "quite a bit of tissue," so devices emitting the light "have potential for excellent biocompatibility," Rabbitt says. "You will be able to implant optical devices and leave them there for life."
Source: University of Utah

Lotte is doing GREAT..!!

2011-03-24T10:44:00.000+01:00

... 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... )

"Baby Baby"

2011-03-24T10:22:00.000+01:00

While sitting at the kitchen table downstairs, we heard Lotte singing upstairs.. out loud.. "Baby Baby"...
Fresh out of the shower, putting her clothes on, she was singing out loud..
We went upstairs in order to catch our diva on video.... just in time.
She just put on her T-shirt (with the CI's on the shoulders) and entered the hearing world...

Btw.. She speaks Norwegian at the beginning "Det regner kjøttboller", sings "Baby Baby" and when out of view says in Dutch to me "Zo, ik ben klaar met douchen" ("There, I've finished showering.")

Enjoy....

Airy plugs

2011-03-04T09:17:00.001+01:00

Lotte's new earplugs... Working well....

Ear-plugs for Lotte - continued.

2011-02-21T04:57:00.000+01:00

OK... quick update...
Ordered - and received new ear-molds... Just like Dan suggested..
Nowadays, for Lotte the norm is to have the BTE's on the ears... Only when there's gym or other sports Lotte wants them on the back...

It's wonderful to see how it's her own choice.. She has a plan - and I guess we 'll have to stick with it..

Would love to add a picture.. but I'm working... far.. far.. away in the middle of the Norwegian North Sea... LOL..

QUICK..

2011-02-18T00:06:00.000+01:00

Have a look here...

Ear-plugs for Lotte - Fair enough...

2011-02-07T10:32:00.001+01:00

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..

2011-02-05T20:04:00.001+01:00

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....

2011-02-04T21:18:00.008+01:00

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

2011-01-26T07:31:00.002+01:00

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..
----------------------------
Usefull links: Sports and CI - Earpiece Guide - Molds
(Thanks Dan..)

A Parents "Duh"..

2010-12-21T12:52:00.007+01:00

We often see this image when there are explanations how the CI works and where the electrodes are located..
But a couple of days ago, I noticed in a magazine ("Din Hørsel" - 08/2010) where the CI is actually located..

To be fair.. I had seen something like it with X-ray pictures of (bilateral-) CI but this picture (not here on the side... but when you click on it..) made me aware of it..

Think of your face.. and then picture where the snailhouse is located.. and then.. click on the picture in this post..

________________________________________________________

Pictures are from Medisan.. the provider of Lotte's CI

FM Equipment.. with Hearing Loop

2010-12-12T14:17:00.000+01:00

We got a new system for Lotte to use her FM equipment. Previous we used this system on the right ( link to the post here).

This was in a transmitter in combination with a socalled "MicroLink" that would fit in the BTE.. Batteries would be in there as well which gave us a problem.
Lotte uses rechargeable batteries. This would mean that Lotte had to remove the rechargeable batteries from the BTE (and store them in a safe place), then insert the MicroLink into the BTE. The latter needed the disposable batteries. This meant two systems of batteries. Not very practical. And costly...
Lotte didn't like it. Probably because there's too much attention directed towards her... Basically.... it was hardly used..

The "Hjelpemiddelsentralen" here in town suggested to use a sender and receiver that would be carried around the neck... The microphone in the transmitter (on the right, the ZoomLink +) would be send to the receiver (on the left, the MyLink +) and then via "teleslynge" ( Hearing Loop in English I believe).. around Lotte's neck to het BTE.. The receiver can be carried under her shirt...
Ideal for sports where it's difficult to hear due to all the noise around Lotte.. A trainer would be able to coach her directly... Only his/her voice would go into Lotte's ear.
The microphone can be set to pick up sound from all around, a small cone, or only from close-by in a "beam" setting... (The three buttons on the Transmitter..)

PERFECT.!!

There's just one problem....
Lotte doesn't want to use it..... "I can hear fine"... she tells us....

OK.. still work to do... LOL..

-------------
Links for the MyLink+ and Zoomlink+:

Microphone / Sender: ZoomLink Plus (User Guide) (Tech. Data)
Receiver: MyLink + (User Guide) (Tech. Data)
SmartlLink +, Zoomlink +, EasyLink +

I want to hear the snow...

2010-12-10T17:35:00.002+01:00

Lotte asked if she could go outside...
"Why?" we asked...

"Because I want to hear the snow under my feet..." was the answer...

Another checkup whooooshed by

2010-11-28T22:23:00.003+01:00

Last Tuesday we went to Oslo. On the following day, Wednesday, we had another checkup at the Oslo Medical Centre.. (Refusing to call it a hospital.. that's another wing of the building..)

Plane and Tram to the hotel for a good night rest.

The hotel is next to the hospital, so that's very convenient.

Her teacher was with us. Lotte got 3 new teachers this year, and we found that it's good for them to see the process at least 1 time. It's one way to talk about deafness, about CI, about how much Lotte hears.. it's another thing to be there and see it..
The hospital is huge... and very modern...

The day starts with the technical stuff. The CI processor was checked and adjusted.
Here, program 3 and 4 were removed. That means that when going through the programs, we now go 1-2-1-2-1-2 instead of 1-2-3-4-1-2-3-4... In itself a minor thing, since we only use P1 for Lotte. BUT with the "teleslynge" (Hearing Loop) in the classroom and school, we have programmed P2 to be weaker and have the "teleslynge only" on there. P1 will have the "teleslynge" with the microphone activated.
So... to summerise:
P1 = Normal program and Teleslynge with microphone activated (MT).
P2 = Reduced (for loud environments) and Teleslynge without microphone (T).
This was perfectly demonstrated when we tried P2 and the "T"... Lotte didn't hear anything any more.. since there was no teleslynge in that area.. and the microphone was "off".... LOL.. It works..

While all the technical programming was done the audiologist was talking to Lotte about how she was hearing. If everything was OK etc.
It was the first time she was interviewed in this way.. after all.. she's older now.
Still, a lot of questions were difficult for her to answer, and Lotte replied many times "affirmative" to questions she didn't understand... Experienced as she is, the audiologist understands that and will refrase the question, or repeat it...
Still a good conversation...

After that over to the echo-free (anechoic) room.
It's amazing how that room works on a person. The only thing absent in that room is... echo's.. Amazingly.. just walking in that room makes (for me) the hair rise on my skin and gives pressure on my head... All that .. just due to the absence of sound...
Lotte needed to repeat words. First single words which went without problems.
She did 100% until she couldn't understand the word "cat". Tried again... but without luck... Very strange, since there were words that are closer to other words that she understood / repeated without problems. Also .. after the "cat" it was 100% again.... Perhaps she's allergic..

Then, sentences in noise. Previously, it would be words or short sentences, but this time Lotte got "grown-up" sentences at grown-up speed. This because.. well... that's how it is in the real world...
After a slow start she did pretty OK...
One sequence was done with the CI on the shoulders. The following sequence was done with CI on the ears. She did a little better on the last one, indicating that some information might be lost with the CI on the shoulder. Next year, we'll start on the ears, then on the shoulders... if it's still an issue.
All this testing was very good info for Lotte's teacher. Seeing how Lotte struggles with some of the tests gives excellent information to her.

A language comprehension test was done after this. Prepositions etc. Lotte has problems with this.

Information with "not" in there for example. The information in the word "not" is just ignored... resulting in wrong answers.
Also she has problems with distinguishing "on top of" and below... She was very consequent in doing that wrong. Anyway.. lot's of work to to in that area.
Again, for Lotte's teacher, it was very valuable information. Seeing where the problems are will be very beneficial for her when she's teaching Lotte.

This test continued after a lunch break. In the end, Lotte got tired and her answers reflected that. (especially in combination with more difficult questions).

After interpreting the tests we talked about the results.
Lotte is doing very well, and basically the tests show where the attention should be regarding Lotte's development.
Basically... hearing is not a problem. Sure, in noisy environment her ability to hear is reduced.
But, it is much more about catching up the "understanding"-gap left by 2-3 years of deafness... Training the cognitive part of the brain...
Plenty of work to do. For Lotte, for us, the teachers and the rest of the support-group around Lotte..

Press release: Advanced Bionics Announces Voluntary Recall of the HiRes 90K Cochlear Implant

2010-11-23T08:54:00.006+01:00

November 23, 2010

Device will be Recalled from the Market while the Company Works with the US Food & Drug Administration to Address the Issue

Valencia, CA, November 23, 2010 – Advanced Bionics (AB), a global leader in developing advanced cochlear implant systems, announced today that it has notified the US Food & Drug Administration (FDA) that it will voluntarily recall its HiRes 90K cochlear implant device and is retrieving all unimplanted devices in distribution. This action is being taken in response to two confirmed instances where the product experienced a malfunction requiring explantation. These recipients experienced severe pain, overly loud sounds and/or shocking sensations at 8-10 days after initial activation of their device.

AB is continuing to evaluate the root cause(s) of the problem and is working closely with the FDA to address their questions and concerns, and institute changes to the product to ensure that the HiRes 90K has the highest quality for patients who use the device. This voluntary action is being taken to ensure continued patient safety and product quality. The risk of any significant adverse medical events appears to be remote at present.

About Advanced Bionics

AB is a global leader in developing one of the most advanced cochlear implant systems in the world. Founded in 1993 and partnered with Phonak under the Sonova Group in 2009, AB develops cutting-edge cochlear implant technology that restores hearing to the deaf.

With sales in over 50 countries, AB’s talented group of technologists and professionals from all over the world are driven to succeed, work with integrity, and stay firmly committed to quality.

###

If you have any questions regarding this press release, please contact an Advanced Bionics representative at 877-577-4628 (telephone) or live chat (online) Monday – Friday 5:00 a.m. – 7:00 p.m. PST.
For media questions, contact:
mediaquestions@advancedbionics.com
Read the letter to recipients (PDF, 35 kb)

Did you hear that?

2010-11-19T10:41:00.007+01:00

OK...
just have to put this down for the record...

Early morning.. Lotte just out bed, (but been awake for a while) and is sitting on the toilet.. doing a (powerful) #1. No CI on the ears / shoulders... so completely deaf....
Lotte's mother is there as well, hearing how she is working... Suddenly a big "splash..!!".
Lotte triumphantly looks up to her mom and says... "Did you hear that..!" :-)

(Update: more a "plong" than a "splash"..)

What's going on inside that lovely girl's head.. ??? LOL
(Probably this..)

Speaking & hearing & understanding for all..

2010-11-11T20:43:00.000+01:00

Trying FM wasn't a big success. (See other posts..) The school had some meeting with the councel and got themself informed about the possibilities for making Lottes learningenvironment better.

One of the conclusions was that having a sound-system in the classroom would be of great benefit to Lotte, and the rest of the class.

So, last week, th school has installed a sound-system in Lotte's classroom. Speakers on the wall, a microphone for the teacher to have around her/his neck, and microphones for all the children.. (well, 1 for every 2 children) so that from now on everyone should be abe to hear and understand everyone else.

We haven't heard yet about how it's working. We understood that on the first day it was available, the teacher used the microphone, but not the kids. But all the kids liked it, and I'm sure they are all looking forward to using the microphone.

It's not just for Lotte, even though she's the reason it's installed. The other children will benefit from better sound, AND they will be trained in speaking in turns.

Will keep you all informed....

Have a look here... (Norwegian)

Hers.... all hers...

2010-11-09T11:29:00.000+01:00

November 2010... time flies and our kids grow without us noticing it.
Lotte is growing as wel. Physically and more important, mentally... More and more things become hers.

Homework is hers...

She will start doing it herself, doesn't want help until she needs it, and (fortunately) allows us to check it and make comments.... If she has done anything wrong... she's OK with having to correct it.

They get a list of what to do from school with them... One of the questions was "Can you make two sentenses with the practice-words"... Her answer was a simpel "Yes"... Wonderful..

Handbal is hers...

She started 3 weeks ago. Many girls (and some boys) are playing in a team and she wanted to join. We brought her to the training and she did great. No chance of hearing anything the trainer said to her, but looking at the other children will get you a long way. She has good coordination, throws the ball fine (her dad - former low-level baseball player / catcher practiced with her before the first training...) and is totally at ease...

So much at ease there, that we're no longer allowed to accompany her to the training.. Well... dropping her of is OK, but not into the training hal...

Last sunday her first games. A tournament in another part of town and she did great... Got a medal for it.. YES..!!

Hearing is hers...
From the phase where hearing was never an issue, where she just put on the CI and went to school, it now becoms clear to her that she has problems to hear at times..
Last week, children had to read aloud from a book. Some of the girls in the classroom speak very softly... Children away from these girls have no possibility to hear them. Nor has Lotte.
The teacher is very committed to making sure Lotte understands everything... So, she asked Lotte.. "Can you hear what they say.?" Lotte couldn't, and "had to" admit that. Thoughtful as the question was... I think that Lotte felt that she was the only one that couldn't hear whas was read aloud..
The teacher explained to her that the girls were reading very softly.... and that she herself couldn't hear then, and the other children couldn't hear either.. But I think Lotte didnt get much of that explanation...
She came home and explained to us that she had trouble understanding others...
That was a first time for us to hear her talk about not being able to hear. (we didn't know the circumstances yet. We were updated later by the teached.. It's great to have such an engaged teacher working with Lotte..)
We comforted her and she forgot about it, and after we got the message from the teacher about what happened, we were able to get back to the incident and explain to Lotte that it was not just she that didn't hear, but many children in the claas, including the teacher.
In retrospect, when a child is speaking so low that other children can't understand what's being said, it would be best to ask any child but Lotte if he/she can hear what's being said... That way, Lotte will understand that other children have the same problem as she.. This time, she thought it was just her..
(Isn't hindsight wonderfull... as they say... "Hindsight is always twenty-twenty.")

This week the school started to use a soundsystem for the classroom...
More about this later

Golf ... I L Y

2010-10-10T14:14:00.007+02:00

Golf is Lotte's new activity... She loves to go to the course... well, driving range and putting- & pitching- green and whack some balls... And she manages well. Enjoying every ball that is launched....

....

Here's video 1 and video 2 (Turn your head to the left for a more realistic view...)

Homework...

2010-10-08T16:36:00.002+02:00

Yesterday a great moment..
Lotte needed to finish some homework; writing down 30 (Norwegian) words that they have been using the last 3 weeks. We say them out loud, she needs to listen to them, and then write them down.
Lotte's mother is in Holland, visiting grandma...
Just before we started the homework, I thought to let Lotte talk to her mother via Google-Chat-Video....

This means OK image with bad sound from the Acer mini-laptop. (Aspire-One)
But Lotte seemed to have no problems with understanding the other side, and before we knew it, her mother was saying the words, and Lotte wrote them down on the computer in the chat-line......
This was so wonderful.... Some of the words are pretty close - sound-wise - but Lotte understood them well.. in fact.. she made only one mistake....

Imagine.... our deaf daughter here in Norway, listening to her mother who's in Holland saying the words she needs to write down, and then Lotte listning, then writing them on the computer in Norway... being displayed in Holland.
Who could have thought that 10 years ago....
All this technology helping Lotte to make the best of the possibilities life has to offer....

For the teachers out there... :-)

2010-09-24T14:01:00.002+02:00

http://www.medicine.iu.edu/documents/Otolaryngology/Medel.pdf

Uhhh...

2010-09-20T09:53:00.000+02:00

Just posting a picture via Picasa.......

First day of school... again... for the third time....

2010-08-17T07:53:00.001+02:00

Third grade already... Time flies.
She'll have new teachers. Not the usual way in Norway. Teachers can stay with the same class / kids for 7 years, but in this case, the class got new ones.

A loss for Lotte as the teacher she had was great. She understood the challenges connected with Lotte, and it took some time to get that experience.
Now, new teachers will have to get their own experiences..
Of course we will have close contact with them and explain the problems. How to make sure that Lotte understands what's been said (Lotte saying "yes" does not mean she understands...). Basically - any message given to Lotte needs to be verified...

But.. Lotte has many friends her age at school that understand her limitations, and will help her.
Some time ago, Lotte's mum said something to Lotte and a friend of Lotte that was visiting...
Lotte said she understood, but the friend said to Lotte "No, she means this / that".. and Lotte
finally understood....
So... even we forget to verify if Lotte gets the message, but fortunately there are some 8-year old safetynets around lotte..

Home.. alone

2010-08-16T21:23:00.005+02:00

Well...
the posts don't come as often as before.. and I guess that's good sign... Milestones are further apart .. or perhaps less visible. Or perhaps we're just too busy..
Vacation is over. Today was the first day of school, and Lotte had no problem adjusting to it..
But... I'm here to share another milestone....

We left Lotte "home alone"...
Needed to do some groceries, and Lotte was not eager to join us. Nor did we feel an urge to tell her that she HAS to come with us..
So.. we left her with "her" mobile phone (don't tell her.. she assumes it's hers, but we have not officially given it to her), set her up with her mothers mobile number and after some ground rules we left.
One of the ground rules was "Not to allow anyone in the house".... Lotte was quick to correct us that her brother and sister surely would be allowed to enter... We humbly acknowledged our mistake...

200m from the house... Lotte calling....
"Can my friend come in" - (son of our neighbours"..??
We answered that that was OK..

500m from the house... Lotte calling...
"He already left." - (apparently the video Lotte was watching did not interest the boy..)

She was good. Some more calls were made, to get the most out of her new freedom. She enjoyed it.
And we enjoyed it as well. Lotte was so at ease with calling us.... just wonderful..

So, with this episode, another milestone passed with warp speed. We hardly saw it... Well, that's not entirely true... It's more like an exit on the highway... "Milestone 1000m ahead" and then passing it at warp speed....

------------

btw...
She nowadays just opens the pouches herself in order to remove the CI from there, and hangs it on her ear by herself.... Giving all the freedom to be the chatterbox on the phone - or mobile phone....
Putting it back... well, that still requires the assistance of someone else....

8 years old.....

2010-08-04T17:20:00.000+02:00

Lotte will be 8 on 5th of august... Her brother made this picture for her..

This is the stage we are ... for now...

2010-06-19T16:53:00.000+02:00

Been a while... and everything is going smooth... As smooth as one can expect with a lion that wants her own way, and is beginning to get the idea how to get her way..

Lotte is doing well. She loves to go to school, loves to do homework and in fact, loved to do math (addition and substraction) that she went through several extra books. She loves it. Not allowing anyone o help, but accepting when we point out when something is wrong... Wonderful...
We found her at times asleep in her bed with the exercises open..... darn... forgot to take a picture of that..

But... we suddenly realised something.... ... We are terrible parents.!!!!
Today in the car she started to sing a Norwegian children song, and when she asked us if we could put the CD on, we said "No.!"... well, actually.. we said "no".
Can you imaging that...?? Our deaf child is singing and we deny her the possibility to listen to it.... (Sure, out of tune and without melody, but that's no excuse to say "no".)
This is terrible... even worse than saying "shut up" to your deaf child that is babbling and babbling....
I hope there's help for us...

17 May.. Norway is celebrating.. So is Lotte..

2010-05-17T17:17:00.008+02:00

Failure - and succes

2010-04-22T03:23:00.001+02:00

Well,
one of the CI's broke down.
Lotte came home and complained about the left CI. It made a "bzzzz" sound, and she was not happy about that.
We checked with the earplugs, and indeed, the CI was not working...
Fortunately... we can call our supplier (Medisan in Oslo) where they have all the stuff they need to send a new one... and the next day it was in the mail. Excellent service...

But...
Lot's of learning come from such an event..
1: Sooo good to still have 1 "ear" left... It has been a couple of years since this happened, but again.. having a second CI to use is just PERFECT..

2: Lotte is at a stage where she will tell us when something is not working. It has happened before that she would not be bothered about a CI not being on... This time, the CI obviously made an awkward sound, so she got annoid.

3: She hears A LOT less with only 1 CI. More "huh"'s more misunderstandings....

4: With 1 CI, going to school, she is tired at the end of the day due to the intensity / concentration she needs in order to understand what's being said.... Another thing that shows how bi-lateral CI is helping Lotte tremendously..

So.. everything back to normal... Lotte was happy to get her new processor, and life is back to normal...

Getting home from school...

2010-04-13T20:57:00.003+02:00

Nothing to say about these pictures...

2010-03 - Gran Canaria

2010-04-08T20:56:00.005+02:00

F*ck you..???

2010-02-18T23:17:00.003+01:00

As some might know we are Dutch, living in Norway, so Lotte speaks Dutch and Norwegian..

At school, second grade (age 7) they get English as well...

So... suddenly we hear Lotte say something like "f*ck you".. in herself, not to anyone...
So, her mom told her not to say that.. to no effect......

Suddenly we realised that she was singing, having difficulty pronouncing the lyrics..... Can you guess...

Queen..."We will, we will,.... rock you..!!"

Our little actress... she's good...

2010-02-17T04:23:00.002+01:00

Pouches.. and the microphones

2010-02-17T04:11:00.003+01:00

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.

2010-02-17T04:08:00.002+01:00

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.

2010-02-17T04:04:00.004+01:00

Adapting the pouch for a audiocabele.

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

Yes... I can hear that. :-)

2010-02-15T00:57:00.002+01:00

Saterday morning... I walk down the stairs into the living room... The girls, Lotte and Sanne are watching TV, around the corner.. they can't see me coming down..

Then, a little voice say's... "Good morning daddy.. :-) "

Lotte gives me a big smile when I turn the corner...

"I could hear it was you.. :-) "

How's that for CI technology... Hearing someone coming down the stairs, and even hearing who it is..

So, next time you hear a simulation of "how a CI sounds".... don't believe it..

Because - there's one thing those programs can't simulate...

The brain...

What should doctors know about deaf children and their parents...???

2010-02-07T16:37:00.025+01:00

Last thursday (4. feb 2010) Jodi (Jodi Michelle Cutler) just came with a request on Facebook... I'll repeat it here for those that can't reach her facebook page..

---------------------------------------------------------------------

I was thankful for five minutes with seven hundred pediatricians. Tuscany has given me three hours...my own three hours to use as I choose to teach 500 pediatricians the parental perspective on newborn hearing screening and deafness. I have created a program of what I want to share, but since you've been with me throughout this entire two year long journey and we've debated, agreed, laughed and hung out-please send me resources. Send me studies, send me anything that has helped your child become the well-rounded, happy, functioning child he/she has become. If you have any youtube videos or websites that you think are important; if you want to send me pix of your kids with cis or hearing aids or signing that I can use on my slides, leave the link in the comments section or email me at jodi@rallycaps.net. I have until Wednesday to translate everything.

And I will give it to them...the pediatricians who took the questionnaire and realized they just did not have enough information and that they needed more...the pediatricians parents criticize for not having listened- I'll have 500 of them in my hands...for three hours.

God, I mean, I'm only a Mom.
*Smile*
(Grazie...)

---------------------------------------------------------------------

Time for reflections..
A nice opportunity to look back for all of us, and let Jodi tell the (Italian) doctors what do when they meet parents like us, and our children..
Our time with pediatricians is done. We hardly see them. Lotte's CI is checked, updated etc, but the last time we 've seen a pediatrician is a long time ago.
What about the ones we did meet......

We suspected that Lotte wasn't hearing as she should after 6 months. At the consultation office, a doctor peeked in her ears, and concluded " fluids in the middle ear.." Case closed...
We accepted the "verdict" and moved on.. As a doctor, he should have followed up. Have us come back asap to check again, until there would be a conclusion about whether she could hear. Not a diagnosis about why she cannot hear at that moment.
FOLLOW UP. If you want to conclude that the child is not deaf, make sure the child can hear.
If it doesn't, and there seems to be a reason... then check later, when the reason for the (temporary) hearing loss is gone.

What I do remember is the first reaction of our family doctor when my wife came with the suspicion that Lotte had trouble hearing.. He checked Lotte and immediately referred us to the ENT in the hospital.
An EXCELLENT reaction. When a mother expresses concerns.. take her seriously...

We managed to get there fast, thanks to another referral by a friend of us (a doctor). This was not appreciated by the ENT-specialist... We should have waited in line.. Yeah, right...
They did a test with Lotte. With a little bell... One nurse would sit across from Lotte, another nurse would ring the bell on different sides... OK, this little girl is deaf. She has learned to read faces.. so.... Lotte passed that test. She could probably read from the face of the nurse across from her where she should look..
Diagnosis: "She can hear." ... .Wonderful.. just what we wanted to hear... even though we KNOW she can't hear...
It's TERRIBLE to do tests that are inconclusive...
A test like that should be done with several speakers around the child... A test with a little bell will never be definitive.... And concerned parents need definitive conclusions...

It took another 5 months to do an ABR, where they found out that Lotte was "profoundly deaf"... From "She can hear" to "Profoundly deaf".. !!
The ENT told us this in the hallway..!! Not in a private office.. In the hallway.
No "sorry.. I thought she could hear" or "I never expected this" or "I was wrong"... Just a little information to the mother in the hallway...
It's TERRIBLE not to show respect...
The message that your child is deaf comes as a huge shock. Even we, who triggered fire alarms, played terrible mobile phone sounds next to her ears, and KNEW she was deaf.. even for us, the official sentence was a shock..

Then, the refusal to start applying for a cochlear implant.. First Lotte had to try HA's.
Fair enough, but with the waiting-list in Norway being a year at that time, they could have applied and while waiting Lotte could wear HA's.. But no.. first wasting precious time with HA's, that were of no use to her...
Perhaps it's the official way, but when HA's had worked, one could have just cancelled the CI-application at any time. No time would have been wasted.
If the parents want it, APPLY FOR CI as soon as possible.

A year of not hearing is a lot for a small child, and it will be a problem later on. In some area's Lotte started with a 2 years gap... and even though she's catching up... it shows in her daily life.
Nowaday's, with screening at birth, this is not necessary any more, but it shows how much valuable time can be saved with screening straight after the child is born.
NEWBORN SCREENING is essential.
it will make the journey for these deaf children so much easier, and the results so much better.
(Many articles confirm this... and with more and more screening and research, this will be more and more obvious.)

From the time we had an OK for cochlear implants, our experiences with pediatricians have been great. They have showed us respect, and explained all possibilities.
They were realistic, even conservative about possible outcome. For example, they never said "Your child will be able to have a telephone conversation.." They never promised anything they could not back up.
And that's great.
Parents need REALISTIC prognoses. Not castles in the air..
In the end, Lotte went beyond the expectations that the ENT's talked about.. And that's great.

Sometimes it is said - by people who have no idea - that choosing CI for your child is the easy way out.
In a way... I wouldn't know, because we never raised a deaf child, except for the first 2¼ years, of which we knew she was deaf for 1 year... And, it was tough.. sure..
But, it's not easy when the child has CI. It's not a pick-nick. It's hard work. Especially working with your child and making it fun, not work..
Parents need to be informed that they will have to WORK to get results...
It's not a miracle where the child goes home hearing. It requires WORK from both parties. The parents and the child. Getting CIs is only a start, it's a beginning of a long period of hard work to MAKE it work. And the parents need to work in such a way as so that the child doesn't see it is work at all... and again.. that's hard work!

5 years ago... our view

2010-02-05T11:13:00.014+01:00

This piece was presented on a conference (NAS 2005 in Stavanger Forum) with all Scandinavian (Iceland, Norway, Sweden, Finland and Denmark) experts on hearing/deafness.. Lotte's mother was there to give the point of view of the parent..

Reflections of a Mother

I would like to equipe my child with several different tools that give her the chance to feel being accepted and at home in more then just one language-area. What is needed of the hearing world so that my child can be met on her terms, so that one can meet in the place she is in?

I would like my child to be able to travel on two tracks on her journey through life, which are parallell. Inbetween the tracks there are invisible bridges, that make it possible to change track whenever needed, there are restingplaces on both sides, where it is lovely to stop for a while and relax.

Or may be it is easier (and cheaper?) to just follow one single track? Then however it is not so simple to jump to the other side, where it can be good to be every once in a while, to relax, to understand and to be understood.

The scenery is probably more visible from several sides. We see beautiful things on both sides, different things, sometimes it’s easier to see around a curve. The colours seem nowhere the same, and the world actually looks a bit bigger!

To be able to get to know both tracks, the child needs several guides during the journey. People that may be have been there before, who can show the way and give a security about the fact that this road is awsome and this we are going to manage really well...

Where do we buy tickets to this trip? And at what cost?

What do the guides need to know before we go on our way, and not in the least: how do we get the child to enjoy the journey?

Mother to Lotte Sofie, spring 2005

(If you want to use this, please refer to the blog or email me.)

I can't hear... !! :-(

2010-01-31T13:35:00.004+01:00

This morning Lotte was talking about having a sleepover with the neighbours downstairs, and how her friend was not allowed to wake her..

"But.. you can't hear, so he can't wake you.." we said to her... "And... you're normally awake first..." we added.

Lotte replied... "Nooooo"
"Yes..." we said... "You wake us up every morning to put on the CI. You knock on our bedroom door.."
"Yes, but I need my ears..".. Lotte replied.

I made a little joke.. "You should knock and then wait 'til you hear us say "come in".."

"But I can't hear she said. " and turned sad... It was a big thing for her...
The first time we see her express sadness that she can't hear. At least.. that's how it looked. Perhaps the sadness came from her needing us to ask in order to be able to hear..
Anyway, the first time that her deafness was cause for sadness with her..

It's inevitable that that moment comes, that your child realises it is lacking something. And as a parent you want to prevent that moment, push it into the future, and soften it..
In our case, it's softened I believe..
It seems that the "problem" is not that she can't hear. The "problem" is probably that in this phase of looking for independence she needs us to start hearing.. and that means waking us up..

It's probably time to teach her to pin the BTE-pouches on her clothes herself.
She has no problem putting the batteries in and starting the system up.. Since she doesn't want them on the ears, she needs help to do this..
Today, we'll teach her that. We'll go through the whole process for her to start hearing. From getting the batteries (rechargeable) and putting them in the BTE, turning them on, and more importently putting the BTE's on a shirt before she puts it on...

Think her "independence streak" will love it....

p.s.
She learned... Costs.. 5 drops of blood from her thumb due to "safety"-pin.

FM equipment..

2010-01-28T12:28:00.012+01:00

We're going to experiment with Lotte's FM equipment.
We have had it for a while, but since she didn't have problems in the classroom, we decided to wait a bit... That's.. until now. Time to experiment.

On my search for some explanations about the equipment I came across this webside..

Nice site to give an idea about using FM in a classroom with noise.
Have a try... . Adjust the parameters. For example - distance to the teacher... and the noise. Then turn on the FM-equipment....

Impressive demo... Not sure how real the situation is... perhaps readers that have CI and use FM may confirm that it's a good demonstration....

p.s.
Some linke (Thanks Dan..)
Acoustics: http://www.lenardaudio.com/education/04_acoustics.html
Info: http://www.babyhearing.org/HearingAmplification/AidChoices/FMSystem.asp
Question: http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-deafness&tid=4918
Acoustics in classroom: http://asa.aip.org/classroom/booklet.html

Cables or headphones....

2010-01-26T20:39:00.007+01:00

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.....
'

The shower incident...

2010-01-26T20:04:00.009+01:00

Lotte needed to get clean.... Preferably by taking a shower...
She comes to me and asks if she can take a shower alone....
"Sure..." and after taking off the BTE's, she happily goes upstairs to the shower....

All's well... a happy child singing in the shower... Deaf, but singing her heart out.... Like I said.. all's well....
... until Lotte's mother finds out that....

Lotte has locked the bathroom door. Uncomfortable feeling: deaf child in the shower with no possibility to get in there if needed. Guess she decided it was HER shower, and NO-ONE was getting in. Not for a wash, not for a pee... !!!

So.... what to do?... How do you get the attention of a deaf 7-year old, enjoying a shower....
OK... brainstorming and with her being so visual, a piece of paper under the door should work... Waving it from left to right.....
And it did... "Yes dad... I'm in the shower. Go away!!"
Hmmm... We got her attention. Now to get her annoyed so she will open the door..... more waving....
"I'm in the shower...!!"
But she finally gets annoyed enough to get out of the shower, and opens the door... A little annoyed, but happy that she took a shower by herself..

We took the key away... Closed the door and automatically turned off the light in the bathroom...
Immediate reaction by Lotte.... "Put the light on.. !!"

Duh... that would have been easier than waving with paper...
Next time.. :-)

p.s.
Lotte noticed us writing on her blog.. So we explained it was about her locking the shower door... She remembered...
"Why did you lock the door..??" we asked.
"Because... So you could not come in."
She did not want any help with washing her hair.. She wanted to do it by herself....
Sweet....

p.p.s. Picture taken by Lotte

New pouches..!!!

2010-01-21T09:30:00.006+01:00

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/

Another big step...

2010-01-20T09:33:00.066+01:00

Just came back from a trip to Holland. A little vacation packed with activities.
Flying to the birthdayparty of grandma on friday, birthdayparty of a great friend in a castle on saturday, visiting other great friends & kids on sunday... recovering on monday and tuesday, back wednesday..
We have never been in Holland with the kids this time of the year. Stavanger was cold and white with lots of snow and ice. (Not normal for Stavanger. Should be rainy and grey) Holland was rainy and grey with patches of snow.... Like Stavanger should have been..
Anyway.... for children being used to Holland in the summer, there was a little shock..
But, chocolate, sausages, chocolate-drinks etc make up for a lot.. and they had a great time.
Reconnecting with their friends and family. Being the center of attention...

Normally we see changes in Lotte due to being on holiday and around Dutch language only, compared to speaking and hearing Dutch AND Norwegioan all day.
This time we noticed a change that had developed during her absence in Norway... She grew - mentally, socially.

There are 3 girls right next door of the house in Holland. One was 2, one 4 and one 6.
Previously she would play with the 4-year old most of the time. For Lotte, communicating with the 6-year old was difficult and at times frustrating. Also for the other child I'm sure.
Playing with the 4-year old was much easier, and therefore the favorite friend.
But, Lotte got a bit older, the 6-year old became 7, and now they understand each other.
BINGO.. instand friends....

The parents of the girl noticed that Lotte speech is more understandable now. They also noticed that their daughter is adjusting to communicate better with Lotte. Shorter sentences for example..
So, in half a year, these girls grew enough to become great friends. Inseperable. Beautiful to watch.

The visits to Holland of course bring these developments to the surface. One has an image of the situation 1/2 year ago, and easily spots the changes. But the basis for these developments lies in Lotte's school situation. The second year mainstram, making friends, learning to adjust, learning to interpret situations all makes for good communication.

Lotte started with 2 years delay, due to her deafness, and started catching up 5 years ago.

She's not there yet.. But she is adjusting wonderfully and for us who see her every day, and in the same situation, it can be difficult to notice the changes.
Only when the situation changes, one can spot the differences. We can see them when we see her in a new situation, others can see them because they haven't seen Lotte for a while.

So, make sure to create those new situations, and enjoy the progress...

The Road Not Taken

2010-01-11T10:17:00.011+01:00

A poem, by Robert Frost, that I should have put in the blog a long time ago..
For us, it describes the choices we have made for Lotte. Her CI, the languages we were going to use, what kind of school and many other decisions, big and small..
Thanks Jodi for reminding me..

Shown below, the glass picture I had made for my wife, based on the poem.
........................................................................................................................

The Road Not Taken

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveller, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I -

I took the one less traveled by,

And that has made all the difference

...Robert Frost

Who she is..

2010-01-10T11:11:00.004+01:00

On facebook, I have been making more connections to other parents of children with CI. In the process, I also came across a group "No Cochlear Implant" where there are fans that oppose to CI. I became a member as well, because I feel that it's easy to be in groups and agree on CI, but more interesting and important to "mingle" with people that have a different view.
It's not that I want to convince these people that they should say "yes" to CI, it's to make sure that the information they base their opinion on is good information. Not misinformation.
Also, as a parent it's good to reply to opposite posts and make yourself think.. explain in a clear matter. Not always easy..

One of the people posting there was talking about how choosing for CI means "not accepting who the child is."
Her post was: "i don't believe in cochlear implants whatsoever. i think parents who do this 2 their child can't accept their child 4 who he/she is."

So I replied....

Ah... yes... "Who he/she is"...
The statement you don't believe in it says enough. How could your child ever be successful with CI if you don't believe in it.
We believed in it. And with hard work from our side and her side, we have seen the success we believed in.. and some more.
And "who she is..." Like any child, she's shaped by our decisions... like your child "who he/she is" is defined by the decisions of us.. the parents...
We saw the child that longed to hear, listen and speak, and that's what she is now.
You might see the child that wants to be deaf... and I hope that is the child you have...
If you live in an area where signlanguage is the norn, he/she will have lots to talk about...
Lotte lives in an area where speech is the norm, and she can't stop talking... :-)

So... "who he/she is.."...
She's exactly what she wants to be...

--------------------------------------
Another thing that is mentioned is that the child remains deaf...
Well...
I myself have a problem looking at Lotte and seeing a deaf child. Everything about her is about speaking, singing... The questions never stop.
And I tried to think about it.... When someone can hear.... Is that person deaf?
I can only say, "She's born deaf. Now she can hear." and I can make her journey more spectacular by focusing of the deafness she had, and the hearing she has now... but I cannot see her as deaf.. I think she has no idea how life would be without sound. Even when the CI is off, she remembers how it is to hear....
Actually.... She hears sound without her CI as well.. LOL.. (Will have to find the link ..)

Happy New Year !!

2010-01-06T23:20:00.011+01:00

During the X-mas time, grandmother was visiting us. Always great... Like she's coming home.. Also for her.. :-) It's a wonderful opportunity for Lotte to play even more games, talk more and read aloud to whoever wants to listen... and during these times, that's grandma.

But these relaxing times around christmas (e.g. breakfast here at about 10:00) make it easy for all of us to interact more.. A lot of time spent at breakfast, and dinner which is great for Lotte to listen, speak and be corrected when needed.
Because, in a way, all communication is therapy. Asking for things at the table will teach her to wait for her turn when she wants something, to pronounce it correctly. To say "please" and "thank you" etc. And - even more important, to listen to others... That when a question starts with "Lotte" that she starts focusing immediately...
And the longer the meal... the longer the "therapy"..

Grandma is a great help, and it's wonderful to have her with us. She even started to learn Norwegian (She is Dutch, like the rest of us..) because she doesn't want to miss out when her grandchildren and we speak Norwegian with our friends.
So, here Lotte is reading a Norwegian book to her. And explaining what it means....

So wonderful.. and one almost forgets that here's a deaf child teaching her grandmother another language..

WOW.!!

Hearing and speaking....

2010-01-04T00:03:00.005+01:00

Wonderful "happening" this morning..
Woke up late, and were listening to Lotte playing with Lego outside our bedroom. Lotte would have been up since 7:30, and she comes to us to have the batteries (rechargeable) put in her processors and have the pouches pinned on her clothes.
So... listening we were wondering if she had a friend with her, since she was engaged in role-play. There was definitely an alternate voice, and it sounded like one of her friends from down the road was with her.. So, Lotte's mum got up, dressed and had a look, only to find Lotte engaged in a wonderful play.. just by herself.

Many times, people will talk about how CI would sound completely different compared to normal hearing... and fine, who can argue with that, except that here's a girl that is doing two different characters, in two different voices, communicating in a make-believe conversation...
Pretty amazing, and far, far away from the simulations you can find on the net.
The mind is an amazing tool, and apparently is able to discriminate sounds very well... even with "only" 22 or 24 electrodes..

Wishing you all a Magical Christmas and a Magical New Year

2009-12-22T19:28:00.006+01:00

Well, this year we were granted a white christmas.

This might be Norway, but in Stavanger it doesn't snow that much.... Too close to the warm North Atlantic. Last white christmas was in 1995 ... I think..... (Update.. 2000 :-) )

All this snow fell in 1 night, and ever since there has been no more snow.. Some promises about snow tonight.... but seeing is believing... (I know.. sometimes... believing is seeing.. )

Lotte has had a great year.... as have we.... Doing well on school, working hard to keep up, making friends, understanding more and more social ways / rules..... She's catching up..

We see her grow in so many ways..

Want to share a "gross" one with you all... :-)

She's been a bit sick. "omgangs-syke" it's called. Stomach pains, diarea, vomiting.....

But the last one is handled like a champ. No panic, just a quick run to the toilet, and letting it go... Wonderful.... Some time ago she might have freaked out, but not any more.

Even last night - 02:00, I woke up and found her vomiting in the bathroom sink.... But no distress.. Just doing what comes natural..

Quick remark that "Daddy... you have to clean the floor and my bed" butotherwise, she just relaxed, laid down on the bathroom floor and waited for me to be finished.

Apart from the thorough wakeup on my side, there was no fuss... And when I had put on the new sheets, and a new cover... her lady-like remark was... "Good night daddy.."..

No... all's well in "Lotte-land"..

Otherwise, Lotte is enjoying the winter-wonder-land... It's magic, and especially just before it becomes dark, there's the "blå-time". A couple of minutes where the world turns blue. It's magical, and I was thrilled to have captured that magic moment. The colours are as on the picture. No editing has been done.... Like I said... 5 minutes of magic..

And "magical" is the word to describe the journey that we are on with Lotte. Because it's magical to travel with this deaf girl that can hear. See how she does, see how she touches other people.. for the better, and see how she changes our lives... for the better.

It's magic to see her determination to succeed like others. And magic to see how she's putting on an act to get what she wants. She's a smart cookie, and will go far....

So, to all the parents out there I wish to say...

Enjoy the magic.. !!

Christmas-time.... singing the stuff....

2009-12-16T17:17:00.004+01:00

There's a lot of singing in the Norwegian society, and it has been a problem for Lotte to make sense of singing.
Now, being able to read, it goes a lot better.... She really enjoys it..
So wonderful to see this deaf girl enjoy music and singing....

This is "Deilig er Jorden" ... about 800-900 years old....

And this is a new song.. "Så Blir de Stille" ("And then it became quiet.")
First without music... Just with her mother..

And now with music..

Good basic info regarding Bi-lateral CI....

2009-12-11T09:39:00.001+01:00

From a thesis by Carol A. Sammeth, Ph.D, CCC-A

Please be careful that the statements selected are representative of the paper's overall conclusions. Also, the part posted is only a piece of a longer work. (Full pdf here..)
------------------------------------------------------BRIEF REVIEW OF BENEFITS OF TWO-EARED INPUT

The Psychoacoustic Literature
There is a fairly voluminous literature in psychoacoustics (hearing science) illustrating the benefits in normal hearing persons of having two-eared rather than one-eared input. When hearing loss disrupts the ability of the brain to process binaural inputs, whether due to large differences in the degree of loss between the ears, or a failure to provide amplification or a cochlear implant to one impaired ear, these benefits can be severely degraded or lost. There are three primary effects ascribed to binaural listening: the head shadow effect, the binaural summation effect, and the binaural squelch effect (e.g. Durlach & Colburn, 1978), producing benefits that range from improved speech recognition in noise, to the ability to localize the direction of a sound, to more “natural” perception. The following briefly describes the key benefits of binaural functioning.

Head Shadow Effect
When speech and noise come from different directions (i.e. are spatially separated, as typically occurs in the real world), there is always a more favorable signal-to-noise ratio (SNR) at one ear than at the other because of the head shadow effect and different sound distances to the ears. The head shadow effect is primarily seen in frequencies higher than 1500 Hz (e.g. Shaw, 1974), with the amount of attenuation of sounds from the opposite side of the head dependent on frequency but ranging from about 7 dB in the speech range up to 20 dB or more at the highest frequencies. If both ears are participatory, the ear with the most favorable SNR is always available so that the patient can selectively attend to this ear. This is compared to the unfavorable situation where only the ear with the poorer SNR is functional. Persons with unilateral hearing loss can become very frustrated when people are talking on both sides of them because they must constantly turn their “good ear” to whomever they want to hear best at the time, and then they miss sounds on the deaf ear side.

As will be shown later in this paper, a primary benefit of bilateral cochlear implants appears to be related to the beneficial aspects of hearing from both sides, and always having the ear with the more favorable SNR available. This is generally tested with speech from a frontal speaker and noise from a side speaker - - when the second ear is added that is contralateral to (opposite side of) the noise source, performance benefit comes primarily from the head shadow effect. Note, however, that there is discrepancy across the published studies in how to quantify the head shadow effect, with some researchers merely examining differences in scores with sound ipsilateral versus contralateral to a unilateral ear under test, and others comparing the score for listening with bilateral inputs to that for unilateral listening with the noise presented ipsilateral to the ear under test.

Binaural Summation & Redundancy
Sounds that are presented to both ears rather than just one are perceived as louder due to binaural summation of the information received at each ear. In fact, the threshold of hearing is known to improve by about 3 dB for binaural versus monaural presentation to normal ears, resulting in a doubling of perceptual loudness and improved sensitivity to fine differences in the intensity and frequency domains. This latter effect is sometimes referred to as binaural redundancy, and it is believed that it may translate into improved speech perception scores. When listening to speech with only one ear in a difficult listening situation or with one ear with greater sensorineural hearing impairment than the other, there is a loss of the redundancy in cues across the ears that may reduce performance.

The benefit of the binaural redundancy aspect of bilateral inputs is typically tested by presenting speech alone or having speech and noise emanate from the same loudspeaker frontally - - when the second ear is added, benefit is possible through redundancies or overlaps in representation at the two ears. In a normal hearing ear, this effect produces about a 1 to 2 dB improvement in SNR (Bronkhorst & Plomp, 1988). At this time, there is only limited evidence for true binaural redundancy effects on speech perception results in the
bilateral cochlear implant literature reviewed herein. This effect is probably not stronger either because such subtle cues are not able to be utilized by ears that have severe to profound hearing loss, or simply because the signal processing available in today’s cochlear implants (with two implants processing independently) does not adequately maintain these interaural cues.

Binaural loudness summation has been shown to occur, however, and is a potential confounding factor in comparing across studies. While most researchers have adjusted the loudness of the implant processing for binaural presentation versus monaural presentation (and made sure loudness is reasonably balanced across the ears), some have not. In a clinical bilateral implant fitting, it would generally be presumed that loudness would be adjusted so that the patient’s overall loudness comfort level is reasonable, and thus any purely binaural summation effects would be reduced or negated for bilateral listening compared to a previous unilateral implant.

Binaural Squelch/Unmasking
A person with only one functioning ear can usually understand conversation well when listening in a quiet environment, as long as the sounds of speech are made loud enough. However, even a normal hearing person who is listening in high levels of background noise can find speech understanding to be difficult in an adverse listening situation (consider, for example, competing conversations with multiple persons seated at a long table in a very high noise level restaurant). This occurs partly because of direct masking and partly because of upward spread of masking on the basilar membrane of the cochlea (whereby low-frequency sounds have a greater impact on reducing perception of higher-frequency sounds than vice versa). Speech recognition in such noisy environments is even harder for a person with sensorineural hearing loss both because of the inherent distortion and loss of normal nonlinearities introduced by cochlear damage, and because these patients show even greater amounts of upward spread of masking effects than do normal ears.

Fortunately, the auditory nervous system is wired to help in noisy situations as long as there is functional input from both ears - - that is, the auditory system and brain can combine information from both ears so that there is a better central representation than would be had with only information from one ear (e.g. Zurek, 1993). This effect, commonly referred to as binaural squelch (but also sometimes called binaural unmasking), results from the brainstem nuclei processing timing, amplitude, and spectral differences between the ears to provide a clearer separation of the speech and noise signals. The squelch effect takes advantage of the spatial separation of the signal source and the noise source(s) and the differences in time and intensity that these create at each ear. This is generally tested with speech from a front speaker and noise from a side speaker - - when the second ear is added that is ipsilateral to (same side as) the noise source, any benefit comes from the binaural squelch effect. There is some limited evidence of improved speech understanding in noise in bilateral cochlear implant patients due to binaural squelch effects, although the effect is not seen across all bilateral implant users or studies, and is not as large as the head shadow effect.

Note that binaural summation and squelch are signs of the ability of the auditory nervous system to integrate, fuse, and use information from the two ears. In contrast, the head shadow effect merely results from the physical attenuation of sound across the head and does not require central nervous system integration - - This does not negate the fact, however, that the head shadow effect is a substantial factor in everyday performance for those listeners with unilateral versus bilateral devices.

Localization
Finally, perhaps the most well-known practical binaural benefit is the ability to localize (i.e. determine the direction that a sound is coming from). This function is dependent on auditory Bimodal Devices and Bilateral CIs, page 9 system perception of interaural (between ear) differences in time, intensity, and phase (e.g. Yost & Dye, 1997). Localization ability can be a safety consideration. For example, when crossing a busy street, it is important to know the direction that a car is coming from. Persons with significant unilateral hearing impairment can also attest to the frustration of hearing their name spoken but not knowing which direction to turn in order to find the person calling them.

Research to date has focused on localization of sound sources in the horizontal azimuth, but keep in mind that it is also possible for a listener to differentiate sound sources in the vertical plane (by elevation) and in terms of the distance from the listener. It is well known that interaural timing differences provide the information necessary to locate the direction of low frequency sounds - - specifically, those less than about 1500 Hz. For sounds that are higher in frequency, the main cue for horizontal plane localization is the interaural intensity difference that occurs because of the head shadow effect. In addition, head and pinna shadow effects,
pinna filtering effects, and torso absorption properties can all contribute to spectral differences that can be particularly helpful in determining elevation of a sound. For a listener with only one functional ear, there are very few cues to assist in sound localization although some rudimentary localization ability can still exist. The literature on bilateral cochlear implants provides significant and substantial evidence that localization abilities are enhanced with the use of both ears versus just one.

Articles on bi-lateral CI (and some PhD thesis..)

2009-12-07T12:31:00.002+01:00

For those interested...

Posted some new article links...
http://lotte-articles.blogspot.com/

5 year aniversary,,!!

2009-12-05T18:31:00.002+01:00

Part 1
Born in 2002-08, operation in 2004-10......

In Norwegian this time...

2009-12-03T14:03:00.005+01:00

I know... no posts for a while, and then all these video's in foreign languages..

Well, these video's show Lotte explaining some Christmas ideas... Santaclaus, presents, the tree.... Explaining in a way that is showing a different phase in her development.
If you can handle some Norwegian, just click the pictures to start the video.. (In YouTube... Make sure you come back here.. LOL )

A friend of us is attending a conference in Trondheim and met some British experts on CI. But, they have no experience bit bi-lingual children... So, she asked if she could inform them about Lotte's blog....

OF COURSE...!! THAT's WHY WE ARE DOING ALL THIS WRITING.... :-)
The more the merrier...

OK... it's not English.... .... :-)

2009-11-28T22:17:00.007+01:00

.... it's Dutch... but it's not about you understanding what Lotte is saying, it's about Lotte understanding what she's hearing.... And she does....

Click here to watch

Hair Do.!

2009-11-27T12:10:00.000+01:00

Good signs...

2009-11-25T10:09:00.011+01:00

It's been a long time... again... I should improve on keeping the blog update more.
Because.. lot of stuff is happening... Lotte's days - and therefore her experiences - are mainly at school and the "SFO".. the organisation that takes care of the kids after school. (from about 13:30... )

Of course a lot is happening at home as well, but when you think of it, she starts fresh at school, and gets more and more tired during the day. When she comes home, she wants to play with friends, cycle do homework, talk to us... but she already had a long day...
But it's at school where she's doing the hard stuff. Interacting with other children. Paying attention in class. Mastering the subjects... Quite a challenge for a girl that was born deaf, and started hearing 2 years after she was born. There's a lot of catching up to do.
At times, we can see how well she's doing. Some times we can see how well she's doing despite her situation. Some times we can see how things are not in place.
For example, cognitively she is not at the level of a 7-year old. This became painfully clear last week when they had a performance on stage, organised by the "SFO". Lotte had mentioned that there was going to be a show. The show was late in the afternoon. Lotte's mother came to pick her up later so that Lotte could see the whole show.

Think of the surprise when she entered the school, to find Lotte on stage taking the second price.!!!

She and 3 boys had practised an act with hoola-hoops, but Lotte never mentioned that to us. She never told us to be there...

Another mother had seen Lotte perform and told what happened. What Lotte and the boys had done, so when Lotte came from the stage, full with pride, Lotte's mum could pretend that she had seen the show.

But it was such a painful moment. The first show - in front of public - of your deaf daughter that is working hard to keep up with her friends and you miss it.. (btw.. Someone made a video, so we will see her.. I'll post it here.. )

It just shows that as parents we have to make sure that the adults around Lotte know that not everything that is communicated to Lotte is understood. Lotte is great at pretending that she understands, but there's a lot that she doesn't get. This was one of those situations. It showed us that communication between SFO and us has to be done on paper. Actual, we know that, but the people at the SFO didn't realise it..

So, room for improvement..
(And... looking for a "hoola-hoop" picture... until then, the diabolo will have to do..)

Calling grandma

2009-11-09T11:14:00.001+01:00

Using the telephone is no longer a problem.
We need to help putting the CI from the shoulder to her ear, but otherwise she is using it like every one else
It's great to see her waiting for her turn, and when she finally has it, she will wander through the house, (have a look here..) pointing at things as if her grandma can see her... Very typical..

She has no problems understanding the other end. When I talk to her, I know I have to get her to focus on listning, instead of just talking...
.. but that could be a female thing.. nothing to do with the ability to hear.. ;-)

Making Pictures. Italy 2009

2009-10-27T10:57:00.001+01:00

Just some brainstorming....

2009-09-12T13:59:00.009+02:00

Social or academic... ? .. Where to put the focus...???
Lotte needs a lot of support in order to keep up with school-work. Reading is going well, and improves with the amount of time we spend on it. Math, adding and substracting so far, requires help as well. Fortunately, she loves doing homework. She loves reading and she's OK with being corrected - gramatically. (That said.. the sentence "I know that.!" is used often by her.. :-) )
BUT.... she loves to get the bike and just go back to school... interact with the other children that are still there. Cycling from one place to another... Being with others....
How to combine this.??
An advantage is that.. this is Norway. We have no problem with her cycling off. She has a watch, and even though she can't tell time, she understands how the dials have to be for her to be home. She's very punctual...
A disadvantage is that.. this is Norway. Days are getting shorter quickly, and cycling in the dark is a No-No for Lotte. Also dusk is too dangerous.... so this leaves little time between getting home from school, and being back inside.

So... there's the dilemma. She needs exposure to both social interaction and the academic... The social part is obvious when friends come home with her. To her it's great, because she can interact 1 on 1. Put another 7-year old in the equation, and Lotte will not be able to keep up.
A couple of days ago this happened when she had a friend over, and the two played along fine. When a third child came at the scene the interaction, or attention is not distributely equally. Lotte will fall behind in the conversation and games, and will get frustrated about that. Lotte came to us and informed us that the latter had to go. She wanted the friend to herself.
For us it's interesting to watch the difference between a 7-year old that has heard all her life, and Lotte, who has been deaf for the first 2 years.
We can see that there is still a lot to catch up.
Lotte is doing really well, but she is only slowly catching up on the 2 years lost. It seems as if she caught up 1 year since she got CI, meaning that she's mentally a year behind the rest of the class..
Realising that can hurt.... or you can look at the other side... CI helped her to catch up.
Because, when she had had signlanguage from the start and because of that had not had a delay in cognitive development, she would still not be able to interact with all the children she's interacting with right now. She would have had just a couple of other friends that would speak sign. And they would only see each other during schooltime, and sporadic visits.
Now, CI has made her in a very social girl, attending the school as her brother and sister - close to home, outgoing, determined to say what she wants to say. Sure.... she could be that deaf/Deaf as well, but not in the hearing world.
She would not have been able to communicate with her grandparents. Even thought they could have learned sign, they would have been surpassed by Lotte in no time. Now, she talks to them on the phone when in Norway, directly when in Holland.
In a way we cannot imagine how Lotte's, and for that matter, ours, and our other childrens life would have looked like had Lotte not been able to hear...
It would have been completely different. Can't say if it would have been better, or worse... but very different.

Btw... she's allowed to cycle to school for 1/2 an hour.. then homework.. :-)

Bilateral CI..

2009-09-11T16:12:00.004+02:00

Lots of information can be found here, at the Binaural Hearing and Speech Laboratory

May articles can be found, that can be used to argue for bi-lateral CI, if needed..

TAg For En SE i

2009-09-02T13:19:00.016+02:00

(For the non-Norwegians.... It should be "Takk for en CI"... "Thank you for a CI".)

Lotte made a drawing for the two persons she knows from the Oslo Hospital, that

do the technical- & speech- checking..

Her right processor was damaged (fell to the floor..), so Medisan (provider for the Freedom system), sent a new one.. For Lotte, anything regarding CI comes from Tove and Ole. The two of them will get the credits.. :-)

The drawing will be in the box being returned to Medisan..... Perhaps it will make it to the hospital, but I hope the people from Medisan will find a nice place for it....

Here it says

"Til Ole og Tove"

"TAg For E" & "n SE i"

Eg har lagtteteg teinn

og TAG for en Sei

Se på en lagentent teinn te teg

Deaf shame...

2009-09-02T10:41:00.007+02:00

Found an interesting post in this blog....

Sure Lotte will experience this as well... not sure to what degree though.... Up to us parents to keep an eye on it.

Yesterday Lotte commented that the children in the first grae (age 6-7) were asking her (Lotte is now in second grade) what "it" is, the BTE's on the shoulders and the coils on her head.

Lotte has no answer for them.....

Lotte explained to us that she did not like being asked all the time. Actually, I have never experienced Lotte explaining her CI to anyone. I think that there is no real explanation to her. It's how it is. I'm sure the questions will come later, but for now, she hears with CI... end of (her) story.

So, we contacted the school, and asked if the teachers in the first grade could do something about it. In itself, this is difficult. Putting focus on it could be a bad thing. In a way, the children just ask what it is. A simple "I need it to hear" would be enough explanation.. We noticed that last year, with Lotte's class-mates. None of them is interested in a 5-minute explanation on CI.... A straightforward explanation is enough to cure the curiosity..

But of course it will be a matter of time before Lotte will start ask questions herself. Will we be ready for it...??? I guess not.... How do you prepare for that... .really..

We notice how she is thriving on sound, but also how there's sometimes a part she's missing. She has her own strategies to cope with it. Guessing answers, ignoring questions, making sure she's the one doing the talking.... Many different strategies....

The best one is of course how she answers a question that ends with ".... , isn't that right?"... Can you guess the answer to that question ....????

==========================

btw.... followup on that site...

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

2009-08-25T09:12:00.015+02:00

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..

Very nice little film....

2009-08-24T11:30:00.000+02:00

Hardly anything to do with Lotte, but wanted to share it with you all.... :-)

One on one...

2009-07-01T20:25:00.006+02:00

Today, Lotte has been with a friend from school almost the entire day.. Away from our house..

It went well. She's been with friends before, but never this long. At the end of the day she was tired...

And that's no surprise.

Think of it.. In a situation with many children, it is easy for her to camouflage that she doesn't understand. She watches the other children and whatever she hasn't understood will be filled in by the action of other children.

Playing 1 on 1 - like today - changes that completely. Any communication from her friend is towards her. So, Lotte will have to be more alert. Will have to focus if she doesn't want to ask too often to have a question repeated.

Apparently, it went very well. They played for a very long time, and at the end of the day they were still friends.

Lotte' s mum called the girl's house, and got the girl on the phone.

On my wife's question as to how it was going, the girl said "It is going very well. But we did fight a bit just now, but that is over now.."

Lovely !!!

New way..

2009-06-29T23:31:00.003+02:00

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..

Swimming....

2009-06-26T22:56:00.012+02:00

.... that has been the thing this week.

School is finished, and the "After-school organisation" (No idea how I had to translate the Norwegianterm "SFO" ) send the children that enlisted to a 2 hour per day swimming course during the week. For free, payed by a fund that wants to make sure more kids know how to swim. A wonderful initiative

Having Lotte in a structured environment in order to teach her to swim has not been succesfull, up to now. (See this post.)

She didn't want to have the CI on. We have used the CI while swimming by putting it in a sealed plastic bag (which worked well..) but Lotte made clear that she did not want it. After some asking she indicated there was too much noise. And I can imagine that in an inside swimmin

g-pool the sound must be horrible. I dislike it with two ears, with 1 ear (we only gave her 1 ear under the swimming cap) it must be awful..

So.. No CI.

After the first day she said something like "It was nice. Not going back..".. And that even with her being proud to be on Norwegian (local) TV in the pool..

But we told her she had to. The following day she was in tears.... but she did go, and it went fine.

The promise of a bikini (A "Hello Kitty" bikini.. ) at the end of the week might have had something to do with it, but even so.... she did go.

And still enjoyed it. Mind you, 2 hours of swimming every day is quite a task for a 7-year old.. (OK.. quarter to 7)

The end result.... She did all 5 days, all 10 hours and got a bikini. (Picture will come later.. sorry)

No big information when her mom asked how it was... Just an OK...

That is, until dinner. The she suddenly stopped eating. Crossed her arms and said "I can swim.! I can swim to the other side without the floaters on my arm.."

Wonderful.... !!!! Now we still have to confirm this.. but knowing Lotte.....

Update:

(btw.. It was Lotte's idea to wear the swimming-cap and inflatable tube... we had nothing to do with that. )

Time for piano- and singing- lessons.!

2009-06-22T17:38:00.005+02:00

Thought to show Lotte's musical side coming out.
We asked her if she would like to learn to play the piano.... Of course she does :-) She started practicing immediately...... Any pianoteachers out there..??

Otherwise..... singing is another of her passions.... Any language will do.. This one should sound familiar..

Enjoy.!

Visiting Dutch friends in Norway..

2009-06-19T23:44:00.010+02:00

Pictures now, stories later.. if needed..

...

"I have to talk to you.."

2009-05-16T03:20:00.007+02:00

Problem....??
Early this morning, a recurring subject came up again.
Sanne, Lotte's sister, same school, 3 classes ahead, complained that Lotte was playing with her and her friends, and not with her own friends...
Lotte was confronted with this, and said that sometimes the girls from her class told her she could not play with them...
Ouch...!!! that hurt.... so we contacted the teacher and asked her to check out the situation..

Several things are happening.
One thing is that Sanne is visiting Lotte's class as well. Paying a social visit, but obviously Lotte can do the same. So we had a little talk to Sanne and agreed that she would not visit Lotte's class for the time being.
Lotte was also confronted with her behavior of going to Sanne to play and leaving her own friends behind.
We called Lotte: "Lotte, come here, I have to talk to you.."
She was told that she shouldn't do this any more. Lotte listened, repeated, and went straight out the door to the trampoline..
A bit later she came in again, and said to her mother: "Mummy, I have to talk to you....
Why can I not play with Sanne??"
We gave the sophisticated answer "Because the teacher had said so..." (More authority than we.. :-) )
"Oh... OK" was the reply... and life continued...

Another thing that was observed is that actually kids did ask her to play, but Lotte chose not to participate..
This can have different reasons. Perhaps she really doesn't want to play with them, but more likely, she anticipated that she will not be able to follow the games the children play and therefore doesn't start..
With the delay she has - cognitive - I can imagine that this creates a problem sometimes. A lot of things that are second nature to those children are new to Lotte. And it will take time before that gap is closed.. She will catch up but it will take time....

Patience - I guess...

Lotte started dance-classes..

2009-05-06T15:31:00.011+02:00

As shown earlier in the blog, Lotte loves to dance and sing. Together with her sister, they have given quite a few performances.. (See here for example.)

A friend of us teaches jazz and ballet at the local music-/culture- school... and when we asked if Lotte could have a look one day she was very happy to invite Lotte.
Our experience before with these kind of activities - before she went to school - was that she is very shy entering an unknown group and joining. Difficult for her to understand what's happening...

Bought the required clothes to make sure Lotte would feel like part of the group, and little ballet shoes. All very much to Lotte's taste.. After all, dressing up is one of her favorite activities.

So, with mixed feelings and not-too-high expectations Lotte and her mom went to the class.

And there the miracle started.....

No problem getting into the classroom. She felt totally at ease, as if she had been there before. No problem that there were 7 other 6-year old girls there that she didn't know. She chatted with the teacher (who - as mentioned she knows a bit ) telling her what happened at school. But she was there to dance, and that's what was going to happen.
She understood the instructions, and was very able to do it.. Looking at what the other children did helped as well.. Total commitment, whilst carrying a radiant smile on her face!!

The teacher, our friend, is English but speaking mainly Norwegian to the class... Suddenly there was counting in English... and Lotte understood that as well.. (Has had it at school..) and when some colors were mentioned Lotte got in the discussion with mentioning "Pink"... in English...
So... understanding the context and not afraid to put in a word herself.

The class went extremely well.. Lotte floating on a cloud due to dancing.. Totally in her element.. It is wonderful to see how she as grown. Getting confidence in herself and the outside world.
Without CI it would have been impossible to do this to the level she is doing it now.

The way she feels secure, and is totally open for new challenges. The way she claims part of the world.

She was still on cloud 5 when going to bed...

A peek in Lotte's world...

2009-04-28T15:10:00.005+02:00

Imaging this....
Early in the morning... Kids got up and the discussion is about being able to sleep, or about waking up.. Not sure..

But suddenly Lotte says "I can't sleep because I can hear Jelle speak when I try to sleep, he wakes me up..."
So we smile and say "You cannot hear when you are in bed because you have no CI on. You cannot hear."
Long silence, and then a big smile. She realized that she needs the CI in order to hear.

This morning a similar incident.
When she wakes up, she needs to come to us in order to have the batteries inserted (rechargeable) and the BTE pinned to her shirt.
She knocks... and waits.. (for nothing.. she's deaf) and then comes in.. We pretended to be asleep... She goes out, knocks again (harder) and comes in again...
Then she tells us: "I knocked, and then you should say "come in" !.."

She is tuned in for hearing.. With or without CI...

Trampoline time..

2009-04-26T17:33:00.007+02:00

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..

Water-rat with wings..!!

2009-04-16T02:18:00.003+02:00

Nope.. she's not afraid any more to jump into the water..

took a while for her to get this free, but then she went for it 100%

As long as she remembers to put on the little wings... she should be fine..

Enjoy her show...!

Survival skills - or just other senses getting trained?

2009-04-15T23:23:00.003+02:00

Mmm.... Here's a tricky one..

Friends of us were away on holiday.. We're not sure if Lotte was aware of that. We didn't tell her... We definitely didn't tell Lotte when they would be back... We didn't keep score ourself..

Anyway... Lotte said to her mother "3 days and uncle and aunt will be back.."
Where did that come from..?? He mother counts... and Lotte is right.. It IS 3 days...!!

At the time I was offshore, with a very good possibility that I was coming home a week early. Bad progress requiring other operation made it likely that I would be send onshore for a couple of days..
.... but no mentioning of me coming home from Lotte...
And for the right reason... I was not send home..... Turned out things changed, and I did the normal 15 days offshore..

SO.... what's happening here.... ??
Any idea's anyone? LOL..
Our friends said "We would require more data before we draw a conclusion.."
Think we'll just do that..

Vacation - looking back

2009-04-13T20:47:00.012+02:00

3 Weeks ago we went to a warmer climate for a week. We had been there before and we were all looking forward to go again. One week with nice temperatures is great after the cold weather of Norway.

Lotte was hyper from the day we told her... Turned out we did that way too early, but what's done is done. So, she started counting down. She's fanatic with that, and keeping good track of it as well. Going to bed with it (Mommy.. tomorrow it's 15 days before we go") and it's the first thing she'll tell us when she wakes up, and enters our bedroom to get the CI's.. (Mommy, today it's 15 days and then we go on vacation") All this before she starts to hear.. ;-)

But something else seemed to happen as well. With the vacation in her head, the excitement, anticipation, she lost focus.
Homework which she loves to do becomes tiresome for us (not for her) since she is no longer dedicated to it. No concentration, no trying to do a good job. Taking the easy way out.
This was especially in the last week before we went..

When finally on the move, and on vacation, she did great. She has grown so much in the last year that it's great to travel with her. Not that it was difficult before, but as apposed to previously, she required hardly any attention. Especially on the way back, she and her brother and sister were sitting on the row behind us, and we hardly noticed them. First time for everything..

All the kids loved the sun, sand sea and pool. Last year we used the CI under the bading cap every time she swam. For our sake, but also at Lottes request.
This year we did it once, but Lotte didn't want it again. She saw no need for it.. She's comfortable not hearing anyone, and we're comfortable with her floating around with her inflatable wings. For her it's just the rule. "When swimming, you put on the wings." and sometimes the rigidness the little lion works in our advantage..
Of course, another possible reason why Lotte doesn't want them is that now she can tell everyone what to do.... but she doesn't have to listen to what they say... ;-)

We had a great time. Morning buffet and dinner buffet, with possible unlimited desert was true bliss for the kids, and for us watching the downing it all... (Well, they had one day with unlimited deserts.. It's vacation after all..)

So much more to tell... but I'll add that later.. perhaps..

Bi-lateral CI... any doubts?

2009-04-11T04:00:00.002+02:00

.. well, go to this post in the blog of Ethan..

Singing and dancing

2009-02-26T21:55:00.002+01:00

Tonight our two daughters gave another sing & dance performance..
Life is great!

Btw... here a dance from last december..

Survival

2009-02-22T07:40:00.006+01:00

.... techniques.... She has so many of them.
Lipreading is well-established, but I have a feeling there's not that much relying on it. She hears well and is more able to understand sentences... Without CI on she will use it, and will still amaze us with how well she can lipread.

Last week I saw another survival technique that we know for long, and avoid automatically..
The speech therapist asked Lotte this question "Lotte, after school, do you go home by yourself, or will daddy or mommy pick you up.?"
Alarm-bells rang with me... Too long a sentence.... Lotte wouldn't get it.. I kept quiet.. since Lotte sometimes has a way to surprise us.
Lotte looked as if she was thinking..... and then said "Yes".
The speech-therapist interpreted the answer... "So your walk home alone".... and Lotte said "Yes".
She really didn't get the question. It was too long, too complicated, so by answering "Yes" she made the adult happy, and as far as Lotte goes she got the right answer. (btw... It was the wrong answer, she never walks home alone.)
But it shows how she sometimes survives.. and people should be careful with how they ask questions...

Sort of the same in the classroom. The teachers are very good and Lotte is doing very well. They look at the children when they speak (Not to the blackboard) and there are more things that help Lotte. And the rest of the class.
One is that a message given to the class, is repeated to Lotte. To make sure she understands what's ahead.
Normally, Lotte will closely look at the other children and figure out what to do, but sometimes extra guidance is needed.
I told them that they should NOT repeat the message to Lotte personally. In no time she will ignore the first message to the classroom. After all, why bother when you know it's going to be repeated just for you.
I suggested to the teacher that she would not repeat it, but that she would ask Lotte what just had been said. That way Lotte will focus on the first message in order to make sure she can repeat what has been said..

In all, these survival skills are OK. I guess we use them as well at times...
But for Lotte it's important that she learns to listen well... So, at times we let it slip, being aware how much she does and does not understand, at times we make sure that she gets it.

But also the people around her should be aware of all of Lotte's survival skills..

Drawings and numbers..

2009-02-18T10:27:00.004+01:00

Parents will identify with this...
It looks as if nothing happens, and suddenly you notice the change. Actually, you don't notice the change. You remember suddenly that something is completely changed since a while ago.
When it happened, how..... you have no clue when it happened, but it's there..

We noticed it with drawings. Suddenly the pictures she made had changed. She even started copying drawings. She chose a DVD of "Mamma Mia" and started drawing the arch and the person underneath it. Amazing. New!!
But other pictures have evolved as well. More structure, copying, or redrawing the same figures.

And numbers are the thing now. She knows them, counts happily to 100, and at school they are counting money. Adding a bit, changing 10 into smaller pieces like 5's and 1's.
Then then we thought to make her remember our telephone number. 8 digits...
Actually, the cellphone of Mouse. Estimated time to make her remember, 3 days....
So, we wrote down the number.... she dialled.. well, pressed the keys, and "bliss" the mobile phone rang.. Magic.
DId it again.. Fun game. And another time.. Lotte liked
Actual time to remember it... 5 minutes.... She's good!! All this was before she went to school.... She still remembered it when she came home from school.. Photografic memory?
Next day the home number was established... We'll leave it at that for now..

All in all it demonstrates again the importance of Lotte going to school. Even though she is still behind in some social things, the learning at school is helping her with catching up.

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

2009-02-10T21:28:00.006+01:00

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".! :-)

Surprise.

2009-02-03T08:51:00.006+01:00

Well, Lotte finally had her first session with the new speech therapist.

2 years ago.... this was a huge problem. Lotte refused to cooperate with the new person in the kindergarten, and we had to sit in in order to have some progress. Took about 4 months for her to soften to her.

This time... Bliss.... No problemo.

Lotte was totally at ease, chatting away, had lots to tell....

She amazed the therapist, and her mother as well, with her speech. Yes, also her mother. She was there and realised how much Lotte had developed her Norwegian. (For those just checking in.. at home we use Dutch, but obviously, at school, the children are immersed in Norwegian)

We normally don't notice, and even so, the changes are from day to day. Quite subtile, until one is confronted with it.

Games were played, and when Lotte needed to count something, she counted in English.. Another surprise for the therapist.. She asked if Lotte knew any English songs... - No problem.

It went very well, exceptionally well probably, and for the next time there will be more difficult puzzles and games I guess....

Our little fierce lion conquered another heart.

Lotte playing with Lego... (before X-mas)

2009-01-27T13:10:00.002+01:00

Singing Norwegian ABC-song

2009-01-27T12:43:00.001+01:00

ABC-sangen

A, b, c så lett som bare d, e, f,
g og h, og i og j og k,
l, m, n og o og p og så en liten q, ("Mø")
r, s, t og u
v og w, x, y, z så lett.
Og til slutt hva kommer så?
Æ, ø, å!

Singing "Leaves are falling"

2009-01-27T11:46:00.002+01:00

Leaves are falling
Leaves are falling

To the ground
To the ground

Red and green and yellow
Red and green and yellow

Some are brown
Some are brown

Just joking around...

2009-01-10T19:24:00.005+01:00

Driving around, groceries... and Lotte is joining us..

She loves to go to the store...

On the way to the store she got a chewing-gum.... It's a treat as the kids hardly get one.... Only on long journeys... and when they are lucky, like today. At the end of the trip the chewing-gum is thrown away.... Part of the deal. No smacking, no swallowing and out of your mouth when we get out of the car. (We don't like to see them go around looking like goldfish on dry land... I know, we're terrible parents.... poor kids..)

Anyway, on the way back, Lotte quickly requested a chewing gum, and again she was lucky.... and happily started chewing..

While driving we told her a couple of times to close her mouth while chewing.... and suddenly.. she said....

"I swallowed it"...

That's a real no-no... and we started explain to her that if she swollows it, she will get a tummy-ache, and she will not get any more chewing-gum.....

It didn't make an impression on her.... No panic reaction due to the vision of never having chewing gum again.... she just took the warning without problems.... No panic whatsoever.... something was not right....

.....and then she smiled and showed us the gum.... In her mouth the whole time...

Laughing out loud because she got us!!

A great joke, perfectly planned and peformed....

... something she would not have been able to do 6 months ago. She's growing up fast...