Another checkup whooooshed by

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..

Update.... 3 years with sound...!!

Lotte is moving on fast, catching up every day.
Lately her sentences became longer, more clear. Discovered rhymes, and more and more singing. Putting on CD's by herself (as in her own choice) with songs and/or stories..
Also writing new words is getting more and more her attention. She can write all the names she knows, but that's just remembering the order of the characters. Now she starts to figure out how to write words she hears.
It's a great adventure.!!

She had her yearly checkup in Oslo where they checked her equipment and tested her for hearing, sound discrimination, sentences etc. Everything was excellent.!!
In order not to waist time (and attention from Lotte), they skipped most of the easy tests in order to move on quickly.
She's at 92% on the scale of hearing / understanding. Whatever it means, and however it is calculated, it shows she's doing great.
In a way, we know, but it's nice to get it "officially"..... (why is that so important.?)

She is using longer sentenses, understanding more and more of the world.
More able to explain her wishes, and, recently, more able to explain what happened during the day, or previous day.

Some days ago, we had friends visiting us that we hadn't seen for almost a year, and when these kind of visits happen, people are amazed about how well they can understand her now, compared to a year ago. For us, it's a confirmation that she improves. Sometimes, improvements are so slow (like with any child growing up) that we don't notice, and it takes "outsiders" to give a sort of reality-check.

Technology... can we really compare HA's and CI's?...

It's easy to compare cochlear implant (CI) with a hearing aid (HA) and frequently this is done in a single breath. However, not by people that have used a HA before, and now use the CI. They explain that CI goes beyond HA. Not just a little, but a lot. For Lotte we have no comparison other than she did not benefit - in our opinion - from HA's.

But there's another part of the equasion that is quickly forgotton. And that is the CI of 10 years ago, compared to now. I quickly compare to our computer now and 10 years ago. We cannot imagine using a 10-year computer with the programs we use nowaday's. It simply will slow down to a complete halt.

This is how I see CI as well. 10 Years ago, software and hardware were far slower and perhaps this brought the CI's closes to the HA in most respects. After all. With the speeds available at that time, all processing power needed to be used for speech. But nowadays, technology has become so much faster, that with the same capacity a wider frequency-range can be used. And is used.

Manufacturers are moving more and more into virtual electrodes and creating software specialised to enjoying music. The new CI-user is no longer satisfied with "just" speech but wants to go beyond that. More environmental sounds and music.

With Lotte we see her speech development which is going well, but more impressive is the level at which she hears. She is able to hear very soft sounds. She's able to whisper, and understand whispering.
But with music she shows little interest. She uses melody but sings in a monotone way..
Is this due to her development or is this due to mapping being focused on speech?

The technician mapping her is very good at his job. He has done it from the first time CI came around, and in a way made it possible for many children and adults to hear.
But this might be the problem. Focus has allways be on speech for him. THIS was the goal and accomplishment. The achievement was to go from deaf to hearing to understanding speech. There was technically never room to go beyond speech, and perhaps this is still the attitude and expectation. Even though technology has moved one, the idea of hearing more than speech is still foreign.

Obviously I'm lacking knowledge in this area. What are the possibilities with Freedom CI. She has the latest equipment both inside and outside, but I have no idea as to what level it is being used.
What I do know is that Lotte is developing well, speech-wise, and that she has never had a bad experience with CI in the way that she does not want to wear it. She hardly pulls it off due to discomfort and is quick to put it on again.
But, there must be more possibilities. Other companies advertise with their progress (e.g. Advance Bionics, MedEl), showing the possibilities, but little is heared when we do our mapping.

Time to investigate!!
--------------------
Cochlear - Smart Sound - Much information in the Global White Papers (Have to log in)
Advanced Bionics - Hi-Res FDA approval - HiResWFidelity120.pdf (Available for adults only) - Bilateral Study Overview
MedEl - FineHearing

Mapping - 2-year evaluation

Her 2-year evaluation was this month.

This is done in Oslo (all the mapping, as well as the operation) and took just 1 day.
One of the teachers of the kindergarten joined us, since it's good for them as well to see what it means to have CI.

Two sessions were scheduled. The first one is primairaly checking the equipment, and then some hearing tests. To see where the limits are. Limits regarding frequency but also regarding amplitude... She was great and surprised the technician with some of the sounds she could hear.

The second session is normally a short session. Testing the understanding of speech.
Sometime this can be tricky, since this is all done in Norwegian whereas she hears Dutch at home and Norwegian in the kindergarten.

This time it took more time. Partly because it is a 2-year check, but also because Lotte was responding so well that the audiologist wanted to do some extra tests. (Doing well as in being patient and not getting bored, tired etc.... Guess the loves the attention - being a Leo)
So instead of the anticipated 30-45 minutes, it took a whopping 3 hours.
In between we stopped in order to get Lotte an icecream.
However, she noticed the pineapple on the paper wrap and decided there and then that she would not like it.... (Anything green, looking like fruit or vegetable she will refuse.) So, it ended up with NO icecream.

But our little girl is doing great. In the kindergarten the speech therapist did a test with her to find out what "speech"-age she is, and came up with 2½. That's great for a child that heared for the first time less than 2 years ago!!
(AllDeaf messageboard)

Mapping

Update regarding Lotte,

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

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

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

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

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

________________________________________________

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








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

(AllDeaf)

New map

Experience 2005-06-17

Yesterday we - my wife and me - went to Oslo to get a new mapping for Lotte. The new processors were not yet available so that was postponed.

Too high demand and not enough new processors. So we'll continue with the "old" ones.

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

After the first mapping, which took 1½ hours, we went out and it seemed that she talked more clearly, repeated words more accurately.

Kind of strange after such a short time, so we regarded it as luck. But there were some other words that were more clearly. It's amazing.
On a test they did, copied from German - English tests she allready scored 32 out of 35.

Not sure if it is MAIS or ACS-R or simular. (Does anyone have those tests available so I can try them?)

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

She was great to travel with. Quite a change from 3 months ago when she had trouble sitting still.

(Who can blame her, 50 minutes plane, 30 minutes train, 15 minutes taxi, quite a long time for a three-year old.)

Mapping

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

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

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

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

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

Just to have some idea of how the mapping-screen looks like.

Lotte has both processors mapped the same way...

First mapping was in November 2004 (Mapping # 17 and 18)

Half a year later, June 2005 (Mapping # 28 and 33)

Beautiful moment

Another beautiful moment is when she hears music and dances. She has a sister as a rolemodel, so copying that goes well.

But now she starts by herself.

Hearing alarms, recognising the telephone and so on.

She tries hard to repeat sounds and manages well at times.

She has a great speech therapists who - I think - has her as sort of a private project.

(First girl in Norway operated on both sides at the same time, plus she will have to learn Norwegian AND dutch AND continue with sign..

She enjoy's the CI. Put's it back when they fall off. At least when she notices. She's not at a stage where she misses sound.

She can go on with both CI's loose.
FYI, instead of a microphones behind the ears in combination with two bodyworn processor, we opted for 2 BTE's that she carries on her shoulders.

It's working really well.
Next mapping she will get the latest BTE's of Cochlear. She's allready got the latest electrode implanted but using the old type BTE.

Eerste Activation - Dag 2

Opnieuw de intensiteit opgeschroefd in twee keer vandaag. Na vanochtend geen reactie, maar vanmiddag kwamen er eindelijk een knipper-reflex bij harde geluidjes.
Jij amuseerde je kostelijk, absoluut niet onder de indruk of geschrokken. Een paar keer dat je verwonderd keek, en wat bedachtzaam.
Wat gebeurt er toch allemaal? Aan het einde van de middag ben je vreselijkmoe, wat timide en teruggetrokken.
Een aantal malen gedurende de dag kom je naar ons toe wanneer het spoeltje heeft losgelaten. We moeten je helpen om het weer terug te plaatsen. Dit is heel goed!!
Betekend dit dat je verschil merkt wanneer het geluid verdwijnt?
Volgens Ole moet je nu je eigen stem kunnen horen.
Vlak voor je gaat slapen: Knijp-Nijntje achter je rug geeft een reactie. Je draait je om en je ogen zoeken Nijntje..Wanneer je blik valt op Nijntje, zien we een tevreden glimlach.

Mous

Eerste Activation - Dag 1

Wat heel goed is, is dat je je inmiddels hebt neergelegd bij het feit dat je de apparaatjes op je hoofd moet laten zitten; je trekt ze niet meer los.
Dit is een hele vooruitgang en heeft gelukkig niet lang geduurt.

Aan het eind van de middag een uitstapje naar de stad.
Bij het verwisselen van een luierin een gehandicaptentoilet maak ik hoge "boehoe" geluiden (veel echo).
Je kijkt me aan alsof je het niet kunt geloven wat er gebeurt en vliegt me met een enorme vreugdekreet om de nek.
Het lijkt alsof er "iets" is doorgedrongen!

BarneTV is heel interessant, zo geconcentreerd als vandaag heb je eigenlijk nooit zitten kijken.
Om 19:00 ga je graag slapen.
Morgen opnieuw een spannende dag..

Eerste Activation - Dag 1

Vandaag was je vroeg wakker, 06:16 uur. Dan duurt het lang als je moet wachten tot 10:00 uur. Eenmaal in de wachtkamer wilde je niet mee toen ze ons kwamen halen.
Je herkent het ziekenhuis, je bent hier eerder geweest en toen gebeurden er dingen die je niet zo leuk vond.
Op mamma's arm ga je huilend mee naar binnen. Dit verdwijnt echter snel wanneer er fantastisch speelgoed te voorschijn komt.
De electroden worden gecontroleerd en alles werkt goed. Als Ole begint met geluidspulsen ben je absoluut niet onder de indruk. Er heerst wat onenigheid tussen jou en ons over het feit dat je de magneetjes moet laten zittenop je hoofd.
De geluidspulsen zijn heel zwak om je niet te laten schrikken; op deze manier "sluipen" ze je hoofd binnen. Voor ons wat minder spectaculair dan we verwacht hadden, maar het feit dat je het niet oncomfortabel vindt is heel positief , wordt ons verzekerd.
Tussen nu en donderdag wordt het geluid heel langzaam opgevoerd.

Na ruim een uur geef je aan heel moe te worden, dan is het pauze voor de lunch.
NA een uurtje slapen zijn we weer terug bij Ole, en gaat het volume weer omhoog..

NB: je maakt nog veel dezelfde geluiden als voorheen, met dezelfde intensiteit. Dat betekend naar alle waarschijnlijkheid dat je je eigen stem niet hoort.

Audiograaf: Ole
Audiopedagoog: Tove

Activation !!

In November she heared for the first time. Very slowly the level was turned up, and from then on she was hearing. Obviously, all this new input to the brain meant nothing to her... but the start was made....

It was great seeing the reflex (blinking) when she could hear. (Well, the brain registered.)
With us the activation was 3 days. 2 sessions every day, turning up the "volume" every time.
And evan though this went very slow (in our opinion) it really worked well, because Lotte NEVER had a negative experience in that time...
Oeps, forgot on day three, a chair was moved, and the sound of the legs on the floor surprised her too much.

.