Passing it on...

First...

 I had two great experiences in Oslo. On Sunday Lotte and I had a meeting people that I connected to via the blog and then the day after a woman stopped Lotte (at the hospital/hotel) recognizing her from the blog when she looked for information about her grandson that was born deaf.

So rewarding to meet people that benefit from the blog... A great feeling.

That said, this is my last entry. Well, the last one solo..

Lotte and I decided that Lotte will continue the blog. I will pass it on tho her, and she will keep you informed about herself. But obviously there will be some supervision.. We will see how it goes.

It's a good time to do this as it also marks that she received her upgrade from the Freedom processor to the newest Nucleus 6 last Monday 13. April 2015. A nice, actually.. great, milestone in her life.

We had to wait quite a while for the upgrade. After 10 years with the Freedom we felt it was her turn, but since it's the Norwegian government that provides the CI, and there are fewer funds available, we needed to be patient. Patience is all OK, but we weren't quiet. We did send some letters requesting the upgrade with arguments why Lotte should be chosen. Reasons ranging from participating in sport to starting a new school with equipment that needs to be in place before she makes that step.

A month or so ago we got the email where we were told the good news. Now Lotte can get used to the new and better sound. Get used to the remote control and any other additional add-ones that are compatible with the N6. 

 

Now, a week later, all is going fine. No hiccups, no surprises... The main difference is now that Lotte is using different programs. The remote makes it so much easier that she is actually using them. Before, with the Freedom, she only used 1 program, one volume.. There was no reason for her to change, or at least it was not worth the trouble.

Or, perhaps she was too young to actually do such technical things. Not physically, but there is a maturity required to realise you can control the way you hear.

In any case, the Freedom has done an excellent job getting her where she is now, and the N6 will allow her to confidently make the next step to the next school and the next phase in her life.

I hope Lotte will start informing all the readers about her journey. And perhaps she will change the audience from parents to children. Or just get more children in here.

Time will tell.

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 

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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)

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..

Lite "mellom"rapport om Lotte Sofie

Godt nyttår!

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

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

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

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

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

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

Med vennlig hilsen,

Mor til Lotte

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Operation - Day 3 - (Going) home

    
    
    
    
    

Operation - Day 2