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
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.
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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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.
http://www.theage.com.au/national/sophies-something-extra-20090821-etuw.html
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.
March 16, 2012 · 7:02 am
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, (www.eep.org.au 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 (www.youtube.com/watch?v=ZDD7Ohs5tAk)
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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Harry's Ears 