Animations..

Spending too much time every time I'm searching for animations when I need to show people how a CI works... Or show Lotte..
So.. here is a collection..

This first one from the FDA is nice to show. No nonsense.... and good explanation on the website..

Here an animation on normal hearing, no hearing and CI..

Here an animation showing the distribution of the frequencies in the cochlea. With deeper incision of the electrode a larger range of frequencies can be experienced.. Normal insertion is enough to cover the frequency-range for speech.

Here a longer description of how the cochlea works... Very informative..

Another milestone... for US this time.

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

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)

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

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..

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..

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

A house full of music..

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

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...

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....