Monthly Archives: March 2012

They call me Magneto

Today had a story that was worthy of being put on Sophie Li’s blog “The funny thing about….”

I had spoken to you about the difficulty of keeping the magnets on Harry’s head. At last week’s Implant Clinic appointment the audiologist gave us slightly stronger magnets in a bid to get them to stay on a little more. The initial magnets were simply a half magnet and now we had graduated to 1 full magnet. Cochlear make magnets up to the power of 6 for our processor so we have a long way to go yet! However we have been warned that if the magnet is too powerful it will cause abrasion to the skin and can get infected … so slowly, slowly we go.

So back to today.

I had finally read the 300 page instruction manual for the processor and had picked up that you can twist the magnet in and out to weaken or strengthen its pull. I decided to give this a bash in a car park outside my hairdressers running late for an appointment. So rushing, I merrily started to twist the magnet out to give it a chance to grip better onto Harry’s head. What I failed to comprehend when reading the instructions was that there was nothing there to hold the magnet in place if you twisted it all the way out.

Suddenly I heard a” clunk”. I ignored it and started work on the second side. Just as I was about to remove this magnet it dawned on me that the first magnet had dropped out onto the ground. And of course the magnet is tan and the ground is covered in gumnuts which are also tan/brown and the size of a small… magnet.

You can only imagine the scene. I was in my hands and knees under the car clawing through piles of gumnuts and leaves. Close to tears after a good 15 mins of trawling, I glanced at the metal flange on the inside of the car door to see a tan, gumnut sized magnet happily stuck to the metal, smirking at me , as if to say ” Where else would I be?”


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Pump up the volume

It was a week today that Harry had the CI’s switched on.

Today was the second mapping session at The Cochlear Implant Clinic.

Our aim had been to get through the 4 set programmes of sound placed in processor from the last appointment. We had actually only managed to give him 3.

We spent a great deal of time over the week observing Harry’s reactions to sound in various surroundings. The night after the Switch On, we took him along to the Primary School Bush Dance fundraiser. It is always a jolly night with constant music from a true blue Aussie bush band, and around 300 kids fuelled with slurpies and cheap sausages. It is an outdoor event which diffuses the sound somewhat but you can imagine for a small boy who has never experienced sound before it was one big initiation. Suffice to say he lasted only 45 mins and then looked really annoyed by the whole thing. We can at least credit him with some musical taste as the band was not that hot!

It was a pretty intense week of sound experiences when I look back on it now. It is also really hard to believe it has only been a week as we feel like we have been experiencing the CI’s for much longer.

His least favourite noise experience has to be the sounds of the playground outside his sister’s Prep class at pick up time. The area is like a surrounded courtyard and at 3:30 pm is filled with about 80 Prep kids looking for their mums. I watched his little face screw up tighter and tighter as the noise increases. There were no tears but definitely a look of discomfort. So we have been moving the programme down from setting 3 to 1 to help him adjust to the sounds at pick up time.

Today the audiologist told us to try and not adjust the programmes anymore but let him get used to the reality of noise level. If he is really upset walk away so the sound decreases.

On Monday this week I took him along to a music class with our lovely friend Beata, who has classes that incorporate massage for babies and music and singing. Harry and I attended one of Beata’s courses last year which we both loved and made some great friends. Beata was keen to see how Harry would react to her singing and music now he had the CI’s working. The girls had a day off school so we all went along together.

Now I can see from the pictures what a fabulous time Harry had, but at the time I was sitting behind him and couldn’t experience his change in facial expressions. You can tell he really understood that he was creating a noise himself with instruments. I have read some Blogs of older kids that have learnt piano and other musical instruments. A great example of this and the most inspiring story I have heard yet about a profoundly deaf child following their dreams, is the story of Sophie Li. She is the daughter of the famous Chinese ballet dancer Li Cunxin (of Mao’s Last Dancer fame) and she has a terrific and funny blog called “the Funny thing about…”. On her blog she invites other young adults with CI’S to describe their funniest moment related to wearing a CI.

Her Bio is incredible. She was fitted with CI’s at age 4 and went through normal schooling in Melbourne, achieving distinctions in Ballet as part of her final school exams (VCE). As well as excelling in Mandarin as a second language she also learnt to play the piano and cello. Sophie is a great role model that profoundly deaf kids and their parents can aspire to.

To end the week Harry now has 4 new programmes in his processor that give him slightly louder sounds than last week.

He also has 2 new magnets with more strength. The ones he started with are the lowest strength for babies and he now has the next level up … Thank God as I was one frustrated woman trying to keep those buggers on his head this week…

Perhaps that’s why it feels like we’ve been doing this forever.



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How to keep the CI’s on

I knew this would be my greatest challenge. With the operation behind us, I was quite certain my days would be filled with trying to find ways to keep Harry’s CI’s in place so he could hear when he was awake.

I had stories recited to me about mums literally wrapping sticky tape round and round their child’s head to keep the apparatus in place. I was offered advice on purchasing Joybands and bonnets. The Joybands I was certain would be the only answer I would require, so I purchased a few different sizes on-line from the States.

Switch On day arrived and we travelled into the Cochlear Implant Clinic with our Joybands feeling confident we would nail the issue. The meeting with our case worker and speech therapist Denise was a quick one. She had an hour to unveil the contents of the 2 suitcases and cover the details found in 500 pages of the instruction booklets.

Mm, did it all go in…? Well not really. I have to say I thought I’d leave the detail of the instructions and warranty to Dan, being a bloke an’ all and I’d look after the general day-to-day management of the kit and its storage.

It is Saturday today and we have now had 2 days of wearing the CI.

I spent most of Friday on the phone chasing down a bonnet. I stood outside the girls’ classrooms that morning pondering how I would get such a thing that was big enough to fit over a 9month old head and thin enough fabric for sound to transmit through to the microphone without distortion. The lovely Rita at EEP Brighton came to the rescue. She had one tucked away in a cupboard saved for presentations. She knew that many parents of profoundly deaf babies had issues with keeping the CI’s on and so she hoarded anything that looked like it might help.

I must explain here that we were using the Joybands. The great sweat bands hold the ear pieces very well and stop them from falling off small ears (the ear pieces are made for adults). But the MAGNETS, they are another story. If you watched the video of the audiology lab where HHH took place you may have noticed I was constantly flipping the magnets onto Harry’s head, hoping they might stick. It is very similar to that fishing game I used to play in the bath as a kid. You have a rod (the cord) with a magnet and a fish with a magnet (the Implant). You have to try to catch the fish with the power of the magnet on the rod. However the power of the CI magnets ain’t that hot. So my idea was that the bonnet could help to hold them in place. And to an extent it is working.

Although Harry is nearly 10 months old he is not yet sitting up. His gross motor skills are behind that of an average baby his age. There is nothing average about Harry so we are not distressed about this but it does throw some challenges our way when working with the CI external pieces.

You can imagine that he is spending a lot of his day in a pram, in a car seat or propped up against pillows to assist his sitting posture. And when placed in all of these places he is leaning his head against something that potentially can knock the magnets off each other. I am going to bed at night in the comfort of knowing this is a temporary challenge and soon he will be standing and sitting unaided and we will laugh about the bonnet.

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The bonnet: who got there first? Emily Blunt or Harry


Harry is the height of fashion as he makes a debut in his bonnet simultaneously with Emily Blunt


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The instruction manuals



Day 2 was definitely a roller coaster.

After Harry’s first feed of the day I realised that we had neglected to unpack the suitcases and set up all the charging devices.
The implant processor comes with 3 types of battery.
A non rechargeable sort that takes zinc air batteries like a watch, a small rechargeable battery which has 12 hours of normal use, and the large battery which can power the unit for up to 24hrs of ongoing usage.

As Harry is still so young and spends a good chunk of his day sleeping, we only need the smallest one at the moment. The battery is probably the heaviest part of the unit to wear and it helps having only a small battery at this stage.

The remote control unit also has to be charged. This remote is an alarm that lets me know if the magnets have detached themselves from his head…more on that later.
It also allows me to adjust the programs, which in a way is his volume.  Today we did our usual round of swimming lessons for the girls. In the swimming centre watching Alice have her lesson I noticed a huge echo and not any sound absorption, so I dropped down to program 1 to stop him from being freaked out by the sound. It is constant observation.

Observation is a going to be our middle name for the next 12 weeks… Check out the photo – this is the contents of one of the suitcases we brought home, so in effect the accessories for one ear.  Suffice to say we marched straight into the local hardware store for a multi plug thingy.

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March 16, 2012 · 7:02 am

Taking home Harry’s ears

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Hear now . And always

Hear now…..and always is the Cochlear tag line.

As you know there was big build up for Switch On today or HHH as Dan called it.  The girls took the day off school; all of the school community was wishing him luck in anticipation as well as all our friends and family.

Yet again, a wise mother I had met at the Early Education Service, ( our local early intervention support service) had advised me that the Clinic works slowly on the sound levels to ensure the babies don’t get freaked out by their first sounds. Thus it can take up to 3 sessions of mapping before you get a result like the one everyone has viewed on YouTube (

 Check out our video ( it is password protected so please insert the password Harry2011)


Harry’s Switch On- 15 March 2012 from Hollie Feller on Vimeo.

The Audiologist Rod is trying to explain that the first round of information he is loading into the processor is designed to get electrical current running through the electrodes in order to start stimulating the auditory nerves. His job  today was to get enough current  sent to the cochlea to start this process through 4 channels , each set with increasing Comfort Levels of sound.  

Harry will start on program 1 tomorrow and is required to move through to program 4 by next week when we are back again to set up 4 new levels.

You have to also laugh at Alice telling on her sister Tess in the middle of the moment we have been waiting 9 months for… Princess Perfect she calls herself ( now we know why!)

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Tomorrow when sound began (for Harry)

Harry trials his new Joybands in preparing for HHH

This was yesterdays blog, but exhaustion crept in last night and I didn’t manage to post it. Hence the title.

Yesterday Harry spent the day practising wearing his Joyband ( ).

As far I’m aware they are  not recycled sweat bands discarded by Federer when he is unable to win the Aussie Open Tennis title, but stylish and comfortable headwear to assist in keeping the cochlear implants on. Unlike those children and adults wearing them in other parts of the world ( it is a US based family initiative) Harry at least can suggest he is preparing for Australian Open tennis trials in years to come.

We know that one of our major challenges after the wonder and joy of today is going to be keeping the hardware on Harry’s head. A 9 month old baby is all about discovery and pulling and touching everything to put in their mouths. We experienced this with the hearing aids Harry wore for about 4 months. I was once in the health food shop getting  mesmerised by the line up of products, when the owner called out to me “Love, your kid is swallowing something small!” I had no idea what he was talking about as Harry was in the pram and was not able to reach out for anything. But with a swift  hand movement through the mouth I fished out the clear mould of his hearing  aid moments before it became a choking hazard. He had actually pulled the ear piece away from the electronic part of the hearing aid to chew the mould – unbelievable work by little fingers.

I stopped putting the hearing aids on him after that as I wasn’t truly able to watch his every move . I admitted defeat .  I absolutely can’t get defeated by the Cochlear Implants. Today I am sure they will reiterate to us how important it is to keep the CI on at all times he is awake. Every time it is taken off his brain will need to adapt back to silence. A tad confusing . Hence the Joybands and the back up plan –  A BONNET!


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Mapping sessions

The implants have been placed successfully within Harry’s head (and ears) so the next stage is for the Cochlear Implant Clinic ‘s audiologists to start programming the processor that feeds the information to the auditory nerve and then the brain . These are referred to as “mapping sessions” and Harry will have 12 weeks of mapping and observations as part of his intervention.  Mapping is the name given to the process of measuring the amount of electrical current delivered to the cochlear by the implant.  It is the process that ensures the patient receives comfortable sound levels.  So our countdown to “switch on” (or ‘HHH’ as Dan and the girls call it, ‘Harry Hearing Hour’) next Thursday is the day that the audiologists will start to set his sound threshold levels  and comfort levels.  They will also hand over to us two James Bond gadget style huge suitcases full of the external part to the cochlear implant.

Check out the diagram on Cochlear’s website that shows you all the parts.  There is a good video here too

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Band aids


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March 6, 2012 · 10:24 pm