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Cochlear Implant HELP new website

FOR IMMEDIATE RELEASE Global, April 27, 2012

A Call for Help Gets Answered

CochlearImplantHELP.com, a new and comprehensive website aimed at helping current and future users of cochlear implants and their families, announces the website launch today. A need was identified to help others better navigate their journey to receiving a cochlear implant, whether for themselves or for a family member such as their child. And cochlearimplantHELP has been created to help them wherever they are on their cochlear implant journey. Whether just starting to learn about cochlear implants or a seasoned cochlear implant user looking for ways to connect to a favorite piece of electronic equipment, cochlearimplantHELP has what you need. Please take a few moments to peruse the site, and feel free to link to it or share it freely. CochlearImplantHELP.com can be found on the World Wide Web at

http://www.cochlearimplantHELP.com

Press Release 04 27 2012

 

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Physio for kids

This week Harry had an appointment with the Physio. This is the 3rd session he has attended and he was referred by our paediatrician 6 months ago when she noticed his upper body muscle tone was slightly under-developed for his age. 

I haven’t really mentioned his physical development much in the Blog, as our primary focus is his hearing.  But it has been an underlying concern for us that there definitely seems to be a link with Harry’s lack of sound and his gross motor skill development. Gross motor skills are the sitting up, crawling, walking milestones that every baby has to go through to develop “normally”.  As part of our process to dot all the “i’s” and cross all the “t’s” we took Harry to see a Developmental Paediatrician in the beginning to assure us he was going to hit all his major developmental stages. So far all tests and diagnosis have been extremely positive and indicate that the deafness is isolated and with that we remain positive that it will always be such. 

The Paediatrician referred us to a Physio however, having picked up at 6 months that he could use some assistance with building his torso muscle tone. It was a simple case of the fact that he was not twisting the top half of his body to find sounds, so he was not building the necessary muscles in this area to allow him to sit up. Ultimately it was leading him to be reliant on lying flat on his back to play.

So back to the Physio.  I was excited to see her again as the last time we visited was prior to Harry’s operation. I really felt that his physical progress had been enormous since this time and she would be thrilled. One major milestone was his sitting up which took place 2 days after Switch On. There is no scientific evidence that the brain receiving sound and vestibular system have a connection but in our book it was amazing to see Harry finally sit up on his own so soon after he had the CI’s switched on.  

We walked away today with 4 main strategies to work on over a month. The goal now is to get him crawling on all 4’s (rather than Slug- like as he is now) and to teach him to get from crawling to sitting and vice versa.  This will then lead nicely into him pulling himself up to standing and then progressing to walking. The physiotherapist was very clear to point out that he would end up doing all of these things eventually but perhaps not in the most succinct fashion.  As I had laboured the fact that I need him upright to allow for a better grip on the magnets, she agreed we would fast track this stage of development so we could get him less reliant on lying on the floor.

I will be spending a great deal of time on the floor with Harry over the next 4 weeks pinning back his hips to force him to thrust his arms forward and push on them. This will lead to him realising that crawling can be more efficient by being on all fours and no longer dragging his tummy along with him.  Based on the amount he eats I would have thought it will be immeasurably easier!

The Physiotherapist also left me with some thoughts on Play.  Play patterns are all linked to brain development and specifically I need to focus on teaching Harry about cause and effect.  All those toys you see broken and scummy in the waiting rooms of doctor’s surgeries and crèches now needed to be on my shopping list. Posting a ball through a ball run to see it move from the top to the bottom. Banging on the pop up toys to see them appear from their hiding spot are all foreign games to me and I realised that at this age with both my girls I was already back at work and their development was in the hands of the childcare workers.

http://www.physioforkids.com.au/

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Hearinghenry headband at work

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April 17, 2012 · 4:36 am

Setting goals


There are no more mapping sessions for 3 weeks now but we are still trouping into the Cochlear Implant Clinic weekly for observation appointments with Denise who is our speech therapist and case worker.  During last week’s appointment we spoke about setting weekly goals for Harry so I had some concrete milestones directly relating to his listening skills.

We are going to focus on “learning to listen sounds” which are the ones we naturally associate with a toy or an object. They are repetitive sounds and ones that are interesting for a baby to listen to.

Sounds such as brrm, brmm for car, ee or for police car, and the obvious animal sounds such as quack , quack for duck and woof, woof for dog.  It is important to not overwhelm your child with too many sounds so I was asked to pick 2-3 sounds that were from the same environment or group but had different pitches.   

I was also instructed to find varying examples of these animals to show him around the house.  Naturally the girls suggested this was the perfect time to get the dog that we have said they can’t have, or perhaps a rabbit like their friends.  All in a good cause of teaching Harry to hear his immediate environment.  Poor ol’ Harry will have to stick to regular books and puzzles like other babies.

It is really noticeable now that Harry is turning to sound. Most sounds of a substantial volume get his attention. He has already learnt that my voice is not that interesting, so I can’t say he is answering when I call him ( or that he is any different to Tess and Alice or even Dan)… but that will come with time.  A hearing baby would start to respond to their name around about now at 10 months. But that is after 10 months of hearing it repeated a thousand times a day. Harry is only 5 weeks in.

On Friday last week the HearingHenry headband arrived in the post. I mentioned this in my last blog as a Sydney mum of a profoundly deaf boy started a company selling these Online after needing to find a solution for her own young son. Her son Henry received his bilateral implants at 11 months so very similar to Harry.  How I hoped they would be the solution to keep the equipment on his head.

They are good. Probably more comfortable for Harry than the Joyband, which is quite tight on his head all day. This is a softer fabric with more stretch.  And the processors sit on the outside secured by what looks like the elastics you used to have on your braces. I am questioning their strength and whether chewing through steak and chips all day is comparable to Harry wrenching at them whenever I am not watching. I have been through 3 since Friday….

It is not the ultimate solution but on Sunday he spent over 4 hours happily rolling and crawling around our backroom chasing a balloon in peals of laughter.  With the addition of some double sided sticky tape to assist the inside of the magnet to stay on his head, the CI’s stayed on the entire time.

 Yes I did pull off most of his fluffy baby hair when I removed the magnets at 6pm that night, but he had a long time of hearing himself laugh and us along with him.

Chasing Balloons 10.5 months from Hollie Feller on Vimeo.


password remains harry2011

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Three weeks post Switch On

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It has been three weeks since Harry was Switched On and we have now had two mapping sessions at the CIC.  Our last session was on Thursday and it was pretty low key.  This is really positive though as the levels they are increasing Harry’s sound to have not changed dramatically since the last session which indicates they are very close to getting an accurate reading of the right levels for his age.

Based on my observations of his reactions and behaviour, the audiologists and speech therapists are thrilled with his progress.  He is turning to sound and in some instances voices.  He is verbalising the entire time he is wearing the implants and his sounds have varied pitch and tone. This all adds up to a strong recognition of sound and gives him a strong start in catching up with his peers in speech.

For me the week has been unbelievably frustrating.  It has tested my patience incredibly and I can only put it down to the magnets.  I have tried so many different permutations of inserting the unit into the Joyband to ensure that the coil does not pull the magnet off.  Currently I have turned the band upside down and inserted the processors through the hole that was the bottom for the battery.  I then place the left processor back to front so it sits further away from the magnet site under his skin.  The left magnet probably falls off every 10 mins at the moment and with the bonnet on his head as well it not always a quick manoeuvre to replace it.  But the bonnet is still required to stop him from grabbing them and pulling them off. 

I have had to completely give up on him wearing them in the car as with little to keep him occupied he has plenty of time to work out how to get them off and in his mouth.  They are apparently splash proof  but I am not keen to allow him to work out how much sucking constitutes a splash.

My friend Jane, a talented seamstress and designer, has been churning out new versions of the bonnet for Harry over the last week.   Actually I discovered it is really a pilot’s cap, so sorry Emily Blunt we are streets ahead of you.  For those of you who are interested in the technical details Jane has replaced the string under the neck with a strap and popper button which has stopped the chaffing from the wet ties after each meal.  She has also made the caps in significantly smarter and cooler fabric choices so he can co-ordinate with his outfits. A big thanks to Jane and Miles for being the model.

I have one last ditch at a solution for keeping the CI’s on and saving my sanity.  A website set up by a Sydney mum with a bilaterally profoundly deaf son Henry.  She has called her site Hearing Henry and has made some of her own headbands which allowed her son to get through the first year wearing them constantly.  I was very moved reading her blog as she describes moments I have also experienced.  Big thanks to Maxine in London who sent me the link to Hearing Henry and who obviously has better Internet searching skills than me.

http://www.hearinghenry.com/

Headbands

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April 8, 2012 · 5:16 pm

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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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

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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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