Time flies..

..
Suddenly it is year#12 with CI's and as one can see from the frequency of the updates on this blog... it is going good.
So good that there is not much to tell. And then again, that little fact implies that there is so much going on..
Let's see. Finished her first year on the new school.
That meant letting go of the security of the teachers that stood with her for 7 years, and taking her own control, with still help from the new teachers.

That has gone well. The sound system has been transferred from one school to the other so children new to her class needed to get the hang of speaking in a microphone.
She is still reluctant to use the FM equipment.

With the Cochlear equipment she "got" a year ago she has many opportunities but she can't be bothered. Still.. we will start pushing more..
The experts that guide Lotte end her teachers, Cochletten from Oslo, are also pushing for it. They know it will help Lotte a lot. We just need to make sure Lotte will get an "A H" moment and start using it.. One can hope..

That reminds me of an incident where she messaged me at work telling that both CI's didn't work. OK - both, that can't be a electronic problem in the CI. Two at the same time is VERY unlikely.. Batteries...
So I asked.. "Are the batteries charged? Did you try the backup." Answer: "Yes. Same problem."
Hmm.. None of the batteries charged? The charger must be broken.. So I asked "Can you put the FM - Mini-Mic - on. Does it work now..??
Lotte tried... No. Didn't work..
I had no idea. The professionals had no idea. Why would both CI's stop at the same time. I got to know from Lotte's brother and sister that she did hear a bit..
Then, The provider of the CI's and equipment had a great idea.. "When is the last time the filters on the mic's were changed out.."..
Uhhhh. long time ago.. Lotte's mom changed the filters.. and ... BACK IN BUSINESS..
Turned out that she had worn a wig at school. Dust must have clogged the filters up the day before....
NOW, she should have been able with the  mini-mic, but guess what. She hadn't charged them So they didn't work... Had they worked, I would have concluded that it would have been the microphones...
So.. We used Lotte's panic due to the situation to show how important it is to have her equipment ready. Keep them charged, have backups ready or change them out in good time..
"If you don't you might end up not being able to hear...".
(Which did happen later in the month... At the theatre the batteries ran dead.. Tough luck..)

Otherwise we went to the USA in 2015. Visiting NYC and in the process meeting up with some "CI-" friends. Meeting in NY and visiting in their home town.
Great to see Lotte be at ease with those lovely people and their children. Of course a bit hesitant at first, but after a warming up period she had no problem chatting with her new friends in English..
This year Lotte promised she would be our German guide. She learned German at school and can use it this vacation when we go to the castle that stood model for Disney.

More to come...

Takîng Control..

Guess I'm not done with this blog after all..

Time flies, and Lotte is almost going to the next phase of the Norwegian Schooling system. after 7 years "Barneskole" (primary school) she will graduate to "ungdomsskole" (lower secondary school) where for the next three years she will work towards a more specific education.

The last couple of weeks there is activity getting to know the new school, teachers and new pupils. 

Lotte was placed in a class without one of her her best friends but after meeting her new classmates, of which some she never met, she was happy and positive about the new classmates.

Yesterday it was the parents that met, and Lottes mum (M) spend a little time explaining to other parents about Lotte's CI. Just a couple of minutes. Enough to inform, not too long to set too much focus on it. 

One of the parents spoke to M about how she met Lotte on a previous activity a couple of days ago and how Lotte had told her that she needed to speak slower because Lotte couldn't understand.

WOW... Great to hear that Lotte is taking care of herself. Making sure she understands what is being said. Making sure she is not missing some essential message.. And this towards a person she had never met... Proud parents here...

It's not often we get this kind of feedback. Obviously from teachers at school we hear how she's doing, but from other parents, unknown parents, this is rare.. Guess that's the "problem" with a child happy at school and with friends... She's fully accepted so nothing is special...

Anyway.... 

So, as said above, I'm far from done with this blog. Mew milestones are pushing buttons that require updating the blog as required I guess..

Technology rocks..

Christmas came today for Lotte. 7 Months early but with full power.

We are lucky here in Norway.. Well, better put, the socialistic system is working very well.. We do pay a lot of taxes, but is is put to good use...

Lotte is now the proud owner (technically she is borrowing the equipment) of the Cochlear Wireless "Streamer", "Mini Microphone" and "Phone Clip" 

( http://www.cochlear.com/wps/wcm/connect/in/home/support/cochlear-wireless-accessories )

Early in the morning we were at NAV Hjelpemiddelsentrale with "I.L.V" to try if Lottes new Cochlear Implant was made ready to work with the new Cochlear Bluetooth Wireless equipment.

After reading through the manual of the Mini Microphone and following the instructions.... it worked.! 

Lotte liked it much more than the old FM equipment. Definitely less hassle although we need to find if the system automatically reconnects...

After that Lotte got to try the Phone Clip. She managed to get this going by herself and directly called her mother... Lotte was thrilled... She loved her new equipment. Even though Lotte has no problem using the telephone at the moment, I can see how this will help her making calls..

Finally we were also allowed to borrow the Streamer to see if this would work well with the television and later in the classroom, when connected to the Amplifier that is running the speakers.. This would mean there is no need for a "hearing loop" in the classroom.

Lotte promised that she will keep NAV/ILV updated about her experience with the three wireless gadgets.. 

Let's check there, at Lotte's own blog, to see what she says... 

http://lotte-deafgirl.blogspot.no/

Sorry Lotte.. :-)

At first I though she could continue on this one, but I decided I want to keep the blog as it is, and Lotte can make her own. In fact, I wasn't ready for the total overhaul of my blog by my wonderful, determined daughter..

So, Please follow Lotte's blog here and share it.

This blog will be available as a resource for us, and anyone else that want to pick our brain. :-)

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.

More and better swimming

It's been a couple of months now since Lotte started to swim.
And she told us that it is much nicer than handball as "with handball I don't know where to throw the ball."...
A team sport is of course much more difficult compared to a sport where you listen and then perform. Especially when you don't get all the information due to having CI..
The trainers are great. After we explained them that not all information is understood straight away, that they have to make sure Lotte understands, they have used that information well. I was really pleased when I noticed a trainer actually managing to get the volume of all the kids down, so that even she could speak with a normal voice... Not an easy thing to do in a swimming pool with 10 kids in a group.. (And more groups in the next lane..)
So, she thrives. Loves to go. Is exhausted after her hour training. Two times a week...
And, great progress..
I hadn't been with her for a while (she wants to go alone... It's her way of owning this activity..) I was surprised to see how much progress she had made in the last month..
Here a video of Lotte after 1 hour of training.... Even though she was exhausted, she still wanted to show her swimming with this video..

She understands... or does she..??

Lotte is doing well. Most important, her teacher knows how to "see" Lotte. We're lucky to have her. Lots of progress. She's a little fighter..

Its difficult for outsiders to really "see" the child that has trouble hearing, because these children are masters in faking they understand the message. 

It's one of the things we have been focusing on a lot.. We tell her teachers, trainers.. "Do not think Lotte understands what you are saying. Not even when she says she does."'

We tell them to ask control questions....

Lotte does understand more and more but at the same time she's hiding some of the things she does not understand. When confronted with that, she will do a step back, smile and say "Oh yeh, I dont understand..". But not before..

It's understandable.. Lotte doesn't want to say every time she doesn't understand, and the teachers, friends, and at times us - parents - rather go on with the conversation than check if she did or did not understand.

Sometimes it doesn't harm to move on... sometimes it's important to verify that the message has gone through..

At the "Lotte-Parent-teacher" meeting the teacher told Lotte that if she doesn't understand, she needs to ask her. And if Lotte still doesn't understand, she should ask again.. It's up to her - Lotte's teacher - to make sure Lotte understands... 

Then I told Lotte that it is always OK to ask. In fact, not asking is the first mistake, and just writing down an answer without understanding the question is the second mistake..

Lotte hates making mistakes, so I hope this will be a motivating way of thinking....

Last week she had a math problem with a question like "What tracks does John have to run in order to run 6 km.?" which Lotte answered with "He has to train a lot.."

When we just point at he answer she is very quick to erase the answer... She realises it's wrong, or better said... she guessed wrong. Rather than thinking & asking when she does the exercise she just writes down the first that comes to mind.. 
Her reasoning is probably: If every question has an answer.. homework is finished...

At the end some tears due "trouble" with friends. Some frustration with friend teasing her.
She explained very well how she prefers to play 1 on 1. When there are more she see the other girls whispering and (often rightly probably) thinks its about her.
Then again.. with girls there's a lot of mental stuff going on... difficult for Lotte..
But she also shows wonderful compassion. How she includes other children when she sees someone is by him/her-self. And how she understands that you should not refuse children to play with you if they ask.. and that this is not valid just at school, but also outside school...

Again...
she's doing well... eager to learn, tell & ask in the classroom, eager to learn outside the classroom as well...

Finally a picture of Lotte in her element.. Watching/listening to movies on the iPad with her favorite friend...

BlimE Song.. - "Join Us"

Weeks of practicing for a dance with all other schools in Norway.
Finding the son.. practicing the dance.... excellent.

   

And in the end it came all together to the day the whole school performed it... All over Norway.
Great initiative..

Swimming with both CI's on...

It's not easy to get them right, but when they finally sit... they sit...
After not wanting any CI under the swimming cap (pre-summer) she agreed (after we forced her) that hearing what the trainers said was kind of handy. So.. 1 CI was accepted. Then she came up with the idea of 2 CI's.. Who are we to disagree with that...

Anyway... We found out that when we first localise where the spool needs to go above the cap, then put the spool there - under the cap, and then push the processors under the cap (on the ear is really awkward..) it works well..

So.. Bilateral Swimming....

  

   

 

Loud in the morning..??

This came up on a Facebook group..
 People with CI experiencing loud noise when turning on the CI in the morning, after a long period of inactivity.

Lotte never had this problem.. (See this post from 2007.. Jeezz.. has it been that long....)

But for those who have this experience.. Here is a possible explanation..
Not that I really understand... out of my league. 

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(From.. http://www.ncbi.nlm.nih.gov/pubmed/23533184)

J Biomed Mater Res A. 2013 Mar 27. doi: 10.1002/jbm.a.34719. [Epub ahead of print]

Dexamethasone released from cochlear implant coatings combined with a protein repellent hydrogel layer inhibits fibroblast proliferation.

Wrzeszcz A, Dittrich B, Haamann D, Aliuos P, Klee D, Nolte I, Lenarz T, Reuter G.

Source

Department of Otolaryngology, Hannover Medical School, 30625, Hannover, Germany.

Abstract

The insertion of cochlear implants into the inner ear often causes inflammation and fibrosis inside the scala tympani and thus growth of fibrous tissue on the implant surface. This deposition leads to the loss of function in both electrical and laser-based implants. The design of this study was to realize fibroblast growth inhibition by dexamethasone (Dex) released from the base material of the implant [polydimethylsiloxane (PDMS)]. To prevent cell and protein adhesion, the PDMS was coated with a hydrogel layer [star-shaped polyethylene glycol prepolymer (sPEG)]. Drug release rates were studied over 3 months, and surface characterization was performed. It was observed that the hydrogel slightly smoothened the surface roughened by the Dex crystals. The hydrogel coating reduced and prolonged the release of the drug over several months. Unmodified, sPEG-coated, Dex-loaded, and Dex/sPEG-equipped PDMS filaments were cocultivated in vitro with fluorescent fibroblasts, analyzed by fluorescent microscopy, and quantified by cell counting. Compared to the unmodified PDMS, cell growth on all modified filaments was averagely 95% ±standard deviation (SD) less, while cell growth on the bottom of the culture dishes containing Dex-loaded filaments was reduced by 70% ±SD. Both, Dex and sPEG prevented direct cell growth on the filament surfaces, while drug delivery was maintained for the duration of several months. © 2013 Wiley Periodicals, Inc. J Biomed Mater Res Part A, 2013.

Copyright © 2013 Wiley Periodicals, Inc.