The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 4,100 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 7 years to get that many views.
Filed under Uncategorized
I haven’t written much about Harry’s speech progress in a while. Looking back on my posts there is a lot about keeping the CI’s on with various accessory adaptations but I seem to have subconsciously steered clear of discussing his hearing progress since the infection.
There is a reason for this.
It was not until the end of October that Harry was given the complete all clear from the hospital and we could say that the intravenous antibiotics had worked to save his left implant. The infection was gone and Mapping showed it had not damaged either implant- you can’t even imagine what a relief this was for us. I guess I was waiting for the thumbs up before I wrote about it.
In the last few weeks we have returned to the Cochlear Implant Clinic for sound level reviews. After Harry’s infection the mapping had returned to pre- infection sound levels and we thought this meant the whole incident had not made an impact on his progress.
But 2 months down the road it dawned upon me in a session at Tarayle that Harry had not made any steps forward with his speech since the first weeks of mapping back in October when he said banana and Alice.
Sometimes the progress when it is not a full word is so subtle it takes a third party to point out to me that he has a new sound or word. Often this is the role of Judy our case worker at Taralye. It wasn’t until I started to discuss with Judy what Harry was doing compared to other kids with a similar hearing age, that it became obvious to me he was no longer mimicking my words in our one-on-one sessions at home.
What prompted me was a play date last month with another Taralye child who had been given her implants one month before Harry and was one month older than him. It was so interesting to see the difference between them. When I pointed to a book she repeated first go ” book” so clearly back to me and was able to do this with quite a few words.
Harry has never repeated words immediately – his process takes much longer and requires a lot of repetition of a word before he tries to speak it. I was inspired that after 10 mnths this little girl was speaking so clearly. But it also made me realise that Harry had stopped even trying to copy my sounds.
My immediate response once I had highlighted this issue was to check with the Cochlear Implant Clinic whether there was an issue with the program or Mapping. They rearranged my next appointment to bring it forward to 2 days later so we could check. They are so efficient to ensure the patients are not left without sound for any length of time.
In my mind I was hoping that there was a technical issue because if all the sound levels were okay then what could be the cause of the change in his speech?
It turns out that he was not picking up high frequency sounds in his left ear- which is the one the infection spread through to the electrode. High frequency sounds are the “softer” speech sounds such as “shh” and s sounds. An explanation for this is possibly some remaining inflammation around the left electrode from the infection- but I felt this was more a guess than a fact, as there is no way for the Audiologists to check for this and so few patients get an infection that travels as far into the implant as Harry’s did.
His left Implant levels were tweaked and he was given 4 programs to work through over a week when we were to return.
It didn’t take long for Harry to move along these new sound levels and throughout the week I was scrutinizing his chatter . It certainly increased post clinic visit but I couldn’t detect any new words or babble- just more frequency chatter which was still a great improvement.
On our return visit the levels evened out on both sides so the left side was detecting high frequency sounds better than a week ago. I am not an Audiologist- although some days i think it would help if I had some training in this field. So my understanding of what goes on once the electrodes stimulate the Auditory Nerve is very basic.
I have been told that once the brain is given the information by the Auditory Nerve that there is sound , there are still a lot of steps to then allow the receiver to be able to create speech . Maybe it is just that Harry’s brain is still creating those pathways after recovering from such a massive infection.
What I do know though, and I always take time to remind myself, is that I have never met a CI recipient who doesn’t learn how to speak well , so it will be just a matter of time.
I know I have some Readers out there who know more than I on how the brain interacts with the information given to it by the CI and are further down the track than us . So I invite you to share your knowledge with us.
After all it is a Blog and what is a Blog without commentary ??
Filed under listening skills, Mapping
I am super excited writing this post. Tonight I met my friend Jane for an impromptu picnic dinner in the park and she brought along a sun hat I purchased for Harry that she was trying to make pockets to put the processors in.
The design so exceeded my expectations.
To be truthful I was doubtful it would work as putting pockets on the outside of a sun hat and hoping the magnets would sit underneath when you couldn’t see if they were in place or not, was a tall order. The hat was just a regular Toshi design ( found in most boutique kids wear and baby wear stores) but I bought a medium size so that it wasn’t too tight – I was thinking the headband would need to go underneath.
So Jane has added some pockets to the outside of the hat above the rim to house the processors . Then as on the headband design , there are small slots to feed the coil and magnet through inside the hat. You have to move the magnets into place with the hat over the top but I am now pretty good at knowing where they sit on Harry’s head after 6 months of putting them on several times a day. I used the flashing lights of the processor to tell me the magnets were in place then tightened the hat with its drawstring. The hat also has a neck tie to ensure it doesn’t blow off. Tonight Harry rode and crawled around the park for over an hour with the hat on and was clearly hearing my calls as the microphones were on the outside of the hat rather than having fabric block some of the sound.
WOW
It is incredible because I was wondering how Harry was going to cope through Summer with a headband and a hat. Certainly that option would be sweaty and hot and possibly unbearable.
But this is a revelation. My only concern is if something does happen to the hat we lose the CI’s but I have now stocked up on labels that read
“Harry’s Cochlear Implants. If found please phone ….”
What I actually wanted the sew-in labels to say was
“If you find these they are no use to you. It means Harry cannot hear anything and at $90,000 a pair we really can’t lose them. So please phone…….. to return them”
I am sure that I will take as good care of the hat as I do the headband and I am sure Harry will treat it the same way as well. He knows it gives him access to sound and only once has he thrown his headband off in disgust….but that my friends in another story!!!!!!
PS. For those interested in headbands we have tweaked the design so no press studs are required. This will make them easier to make en- mass which I am still trying to do. Stay posted for more updates and I have photos if anyone is interested.
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I have spoken in the past about how much as a family we are in awe of Graeme Clark.
A man who himself admits to the fact that he never imagined his life’s work would bring such change to people’s lives across the Globe.
Last month we had the honour, and it certainly was nothing short of an honour, to meet this Genius. As 2012 is the 30th Anniversary of the 1st commercial Cochlear Implant, Prof. Clark has been catching up with some of his fans throughout the year. I am sure that most of those he has met could actually thank him themselves for the incredible technology that allows them to hear and master speech. Young Harry is not quite at that stage and will have to rely on us recounting the story to him as he grows.
The story goes a little bit like this:
It was a sunny morning in Melbourne and the girls were taking the morning off school. They were asked to dress in their finest attire, something suitable for meeting a Gentleman.
The Professor works out of Melbourne University these days but told us he had close ties with Wollongong University where he studied as a young man.
The meeting was brief but very enlightening. Here is a man who has dedicated his working life to transforming the lives of others. If you haven’t read his book “Sounds from Silence” I highly recommend it. The Professor talked to us about the emergence of Nano Technology in the Bionic Field. This seems to be the future for Cochlear Implants, bringing about high definition sound through more electrodes in a smaller array. He mentioned how the current sound really isn’t as good as they want it to be and how he hopes the users can one day enjoy all the complex sounds that music offers.
He also spoke of how challenging working at the forefront of ground breaking research can be, as it often takes more funding than is available. Donations to his Foundation help with this.
We have some lovely photos of the morning and some memories to treasure. The impact the CI’s have had on our family is so entrenched that any connection with this world is a significant event.
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Harry's Ears 