Kate's Cochlear Implant WordPress.com

Kate's Cochlear Implant
A blog about my experience of being deaf and getting a cochlear
implant.
February 19, 2010
My final post? 7 months on
Posted by Kate under About me, cochlear implant, deaf, hearing aids,
hearing loss | Tags: after switch on, audiologist, audiology, cochlear
implant, deafness, hearing aids |
[49] Comments
So, I am thinking this might be my last ever post on this blog.
I have reached the point where there is not really much new stuff to
report.
I know it has only been 7 months since I got the implant (7 months! is
that all???! Can you believe it?) But already, I think I have reached
the peak, and plateaued. The implant will not get any better or
different now in my right ear. It has reached its’ ‘zenith’.
And what a zenith that is.
I can hear on the phone now. Very well.
Normal pjhone and TTY phone now sit on my desk together.
It's goodbye TTY, hello normal phone since I had the implant. However,
I keep the TTY on my desk just in case! Can't shake the feeling of
needing it there.
So well in fact, that I have had a normal phone installed on my desk at
work alongside my trusty TTY phone that I always used when totally
deaf.
So, as you can see – the cochlear implant actually did what I dreamt it
would do – it allowed me to reconnect with the world on the phone
again.
I can also hear a lot better in group conversations and meetings. Where
I used to strain to hear someone at the other end of a meeting table,
now I can sit back and hear almost every word. That never ceases to
amaze me.
The things I still can’t do all that well are:
the hearing aids, but they are still a bit unclear at times)
really relax and enjoy movies and TV – however, I have been to see
Avatar and
TV captions
I still need to watch TV with captions. Which is why it's so
frustrating when they don't have them!
District 9 without captions, and understood most of it. I can also
understand most TV news without captions.
people a lot better in noise.
So, if I am going to leave anyone with a word of advice, or perhaps a
message to the deaf community, or maybe parents considering an implant
– having been through this all before, having met so many people who’ve
had implants, having talked to ENT surgeons, doctors, audiologists and
researched online – it would be this:
Kate’s Final View on Cochlear Implants
Disclaimer, this is only my view, no one elses. You might think it’s
completely wrong, yo! If you do, then leave a comment, but make sure
its a clever, well-thought out comment. I’ll delete stoopid ones!
hearing aid, except it is implanted in your head.
just like hearing aids. To find out whether you are a good
candidate, you need to see your cochlear implant specialist. A
normal audiologist just won’t cut it – they just don’t know the
real facts and figures.
to benefit most. I was one of those, losing hearing over ages 11-19
years.
implant after 5 years old seem to find it harder to adjust – maybe
because of crucial years of language development have passed? Not
ure.
age of 5 years old seem to find their cochlear implant more useful.
20 per cent of the time you will not be using it (i.e. swimming,
hower, in bed, when playing messy sports), so it pays to learn
ign language and lip-reading to use with your family and friends.
I am glad I got the implant. I am also glad I waited because it was an
emotional ride. But I would do it all again, definitely. If I had a
deaf child tomorrow, I would give it a cochlear implant before the age
of 4, teach it sign language and show it how to lip-read.
There, getting off my soap-box now.
Here are my final test results for the 6 month test at the Sydney
Cochlear Implant Centre – please note the disclaimer my audi asked that
I include on my hearing aid result!
These are the test results for my Phonak hearing aid in my right ear:
Note: These hearing aids use “Input Compression” or “AGCI” (Automatic
Gain Control for inputs). This feature means that the hearing aids vary
the amount of amplification according to the loudness of incoming
ounds. Soft sounds are amplified more, while loud sounds are amplified
less. The complexityof the aids means that they amplify warble sounds
used in aided threshold testing differently to running spech. For this
reason, aided thresholds measuired with a non-linear aid can only give
a general impression about what is audible for complex sounds such as
running speech.
Freedom Cochlear Implant hearing test result
This is the test result for my Freedom Cochlear Implant, in my left
ear.
My final speech recognition tests were:
Sentences
Words
I used my hearing aid)
So, I as you can imagine, I am contemplating getting a second cochlear
But I am going to hold off for a few years, only because the hearing
aid balances out the sound of the cochlear implant, and makes
everything sound ‘normal’.
So I guess you could say ‘watch this space’ – I may come back with a
new blog:
“Kate’s Second And Hopefully Final Cochlear Implant”!
Who knows!
Until then, bye, and thanks for reading!
Kate Locke, signing off!
Kate Locke, signing off! That's it from me - have a great 2010!
January 22, 2010
I won a Human Rights award
hearing loss, Living with deafness | Tags: advocacy work, captioning,
cost of cochlear implants, deafness, government support for cochlear
implants |
[5] Comments
Kate Locke making acceptance speech at Australian Human Rights Awards
ceremony in 2009
Do I look a little nervous? Perhaps! Not every day you have to stand up
in front of 400 people to talk for 3 minutes.
Can you imagine my face when they told me I had won? I was in shock.
It was the Australian Human Rights Community Award for an Individual.
It’s a big thing for me, because when you do the sort of stuff I am
doing, it’s very lonely work – you think no one notices it. You do it,
not for recognition, just for trying to change things for the better.
Plus, I’ve barely won ANYTHING in my life. So this is mega epic for me.
You can actually hear the acceptance speech at the awards ceremony
which was held at the Sheraton on Park in Sydney on 10 December 2009.
For all my deaf friends, I have asked them to please put up a
transcript for hearing impaired people! And lo and behold, mine is the
ONLY one that comes with a transcript. HAHA.
Click on the link below to hear the audio of Human Rights awards
peech:
http://www.hreoc.gov.au/podcasts/awards2009/individual.mp3
January 7, 2010
Looking back: The isolation of deafness and considering suicide
Posted by Kate under About me, cochlear implant, deaf, hearing loss,
Living with deafness | Tags: deafness |
[36] Comments
I turned 30 years old this week.
A real milestone for me.
It has caused me to reflect back on my life over the past few years …
I was thinking about how this blog has been exceptionally positive.
When I started it in June last year, I actually thought it might be
quite sad in tone, or dramatic. It has surprised me how very positive
everything has been, how positive I have felt.
I had a very hard time when I was a teenager, and in my early 20s. Many
people don’t realise just how difficult deafness can be. It is a hidden
disability, an isolating disability, because it is one of
communication.
I was in bed a few minutes ago, trying to sleep, but turning all my
life events over in my head, thinking about the journey that has
brought me here. It’s 4.45am now, and as always I think the best way to
cure insomnia is to get up and write about what’s keeping me up! Once I
get it out, I’ll sleep well again.
Sometimes I just can’t believe that I considered suicide.
When I was 21, all the difficulties associated with my deafness came to
a head, and I decided to kill myself.
I had struggled with university. I didn’t know any other people who
were deaf, and I didn’t identify with any deaf people. No one
understood what I had been going through. I was too anxious and afraid
to tell people how difficult it was.
At that point, closed captioning in Australia wasn’t that widespread,
VHS’s or going to the cinema. I remember very clearly coming out of a
cinema with all my girlfriends, and realising I hadn’t understood most
of the movie, and so I couldn’t join in with their conversation
afterwards. It was a devastating feeling sitting quietly trying to
follow the conversation around me, and not knowing what they were
talking about.
I couldn’t afford decent hearing aids. They are so expensive, and being
a university student at the time meant I had very little money.
Another issue was uni, where group work and lectures and tutorials were
going on. Going into uni every day was stressful like you wouldn’t
believe. I remember one tutorial where I was trying my hardest to
lip-read everyone – the lecturer, and the students as they made
comments. Usually I was silent in these classes, as I wasnt quite sure
who was saying what. But one day I really thought I had a relevent and
interesting comment to make about a topic we were discussing. So I put
my hand up, said my bit, and there was silence. The lecturer looked at
me in a funny way, and said: “I just said that.”
I was so embarrassed. I never made another comment or participated in
that class again.
These are the awful parts of deafness. It’s a lonely thing to deal
with. I wouldn’t wish it on anyone.
It got to the point where I was sure I was going to be dependent on my
family for the rest of my life. I mean how could I get any
well-paying job being as deaf as I was? How would I ever meet a
partner? I didn’t feel like I could relax even in the presence of
friends because I was always struggling to hear them, so life was just
one big constant source of stress.
I was only happy when alone.
The worst thing was, I knew life hadn’t even really begun. I was 21!
I remember thinking: “This is not even the beginning. Life is just
going to get harder.”
The way I felt, life was already unbearable… And it was about to get a
lot harder.
The night I considered suicide, I remember so clearly.
I’d had a particularly bad night at uni, had a fight with my mum, had
almost missed the bus home, had a terrible, awkward conversation with a
friend of mine – it was late at night, and as I walked through the
darkened Sydney streets towards my house, I said to myself: “That is
it. I can’t take it anymore.”
I made the decision then and there that I would kill myself, and that
it needed to be that night.
The most enduring memory of that moment is how time suddenly stood
till. All I can remember was the sense of calm that came over me. My
breathing, my footsteps on the pavement, the bright clear moon high
above me, the darkened, damp city streets, the street lights.
Everything became acutely clear and still. There was a heavy, calm
feeling in my chest, the first time that I had ever felt the jittery
feeling leaving my heart and stomach.
That was what frightened me the most. How very calm I was. I was so
detached, so rational. It was like a relief.
I realised that this was the biggest decision I had ever made in my
life, and there was some strange comfort in having taken control back
in my life – I started rationally thinking it through. What were the
pros and cons of dying. How would I do it. Was there anything that I
thought might improve to stop me from doing it.
I walked and walked the dark streets, and thought long and hard.
As I went through the pros and cons, the thing that caused me to pause
was that I didn’t know what happened after death, and therefore, I
couldn’t prove that what I was experiencing now would end when I died.
If it didn’t end, would I be doomed to be stuck in this eternal moment?
I also knew my mum would be devastated.
Finally I came to a decision. It was a feeling I wanted to end, not my
life per se. So I said to myself: “No. Death is not the answer. I will
not do it. I will find another way to end this feeling. ”
I walked all the way back to the apartment I shared with my mum, in
that calm, still, transcendent state. I realised how close I had come.
I walked upstairs, sat down at my desk, wrote my mum a letter telling
her what I’d planned on doing, and how I had decided not too, but that
I would need help. I then went to bed.
I slept, but it wasn’t like any sleep I have had before. I closed my
eyes, and lay in one position all night, neatly under the covers,
unmoving until the sun came up. It seemed the night was over in a few
econds. I opened my eyes to find my mum standing over me, looking down
at me with stillness in her eyes, holding the letter.
She didn’t look upset or anything. And I remember her saying, I will
help you. And I got up, we went and had a cup of tea in the kitchen,
and talked. And I knew then that everything was going to be alright.
November 30, 2009
Listening to TV on plane flight with cochlear implant
Posted by Kate under cochlear implant, deaf, hearing aids, Living with
deafness | Tags: after switch on, cochlear implant, flying with
cochlear implants, t-switch, telecoil |
[19] Comments
Ben and I flew to Perth last month to attend the Hear For You mentoring
program for deaf kids in Western Australia.
It’s a 5 hour flight from Sydney to Perth – I normally hate flying long
flights because I can’t hear the announcements (freak out when pilot
ays anything, think we’re going to crash); can’t watch TV (no
captions); can’t listen to the radio (I’m deaf remember); can’t read a
newspaper (too big for economy!); and get bored of my book after 3
hours of reading.
So had readied myself for torture.
View out of the aeroplane, flying over Australia
I am a nervous flyer. All the captain has to do is murmur "It's a
beautiful day outside, and we're 20 minutes from Sydney." and because I
can never quite hear clearly what the announcements say, I'll freak
out, thinking "What did he say?? Did he say we are going to crash??!!
Oh my god, we're all going to die!" And then wonder why everyone else
tarts reading the newspaper and ordering beer. Delightful.
We were flying Virgin Blue which is budget, so you have to pay to watch
TV if you want it. After we settled in, and took off, they made an
announcement that the credit card payment machines attached to the back
of the headrests were broken, so they were going to give everyone free
TV for the whole flight.
Everyone whooped and cheered, except me, because I thought I wasn’t
going to be able to hear anything, so would be left out yet again.
But then I thought, geez, if it’s 5 hours of free TV and movies, I’m
going to have a go. I’ll just watch the pictures if I have to – that
will be better than just being bored out of my mind.
I held up the headphones to my hearing aid and cochlear implant and
tried to follow the TV – I could hear it, but it was so static-ey and
unclear, it was really disappointing. On a whim, I decided to try the
‘t-switch’ on both hearing aid and cochlear implant, which shuts out
all the background noise, and only picks up the radio signals coming
from TV. You have to have special headphones for that, so I didn’t
think the Virgin ones would work.
But surprise! They had an operational telecoil built in! No
notification anywhere, those stupid dolts. It turned out even Virgin
Blue themselves didn’t know their flipping ear phones were built in
with telecoil adaptability. Pathetic.
Holding the ear bud up to my ear, suddenly I could hear the audio quite
clearly! I turned to Ben going “I can hear it! I can hear it!”
Kate with headphones wrapped up in scarf
Wrapping my scraf around my head I managed to get the ear bud close
enough to the cochlear implant microphone to be able to hear the audio
for the TV/movies on the Virgin Blue flight. I sat like this for 5
hours from Perth to Sydney.
Small obstacle was the fact that the headphones provided were ear-bud
types. Now that is difficult for cochlear implantees, since the
microphone for picking up sound is behind your ear, not in it!
Ben said: “Why don’t you try sticking it to your microphone?” and I’m
like “With what??”
In the end we wrapped a scarf around my head, and I sat like that for
the whole 5 hours, and was able to watch TV and hear it perfectly.
November 16, 2009
It’s been 4.5 months now
Posted by Kate under About me, cochlear implant, deaf, Living with
deafness | Tags: after switch on, cochlear implant, deafness, hearing
aids |
[9] Comments
So it’s been four and a half months now since I got the cochlear
implant in my right ear.
I haven’t written an update in a while, because I haven’t felt like
there is anything interesting to report!
But I guess what I think of as being boring, my family and friends
might find interesting.
So, here we go.
Since I last wrote, I am hearing so much better than before – in fact,
my last sentence and word perception test had these results:
So… yes. It is amazing. I am still profoundly deaf when I take off my
cochlear implant and hearing aid, but now I can actually hear stuff
when I have them on.
I’ve been having conversations with Ben without facing him, so it looks
like I can definitely hear some people without lip-reading.
I have also been still using the web captel trial put on by ACE.  This
means I’ve been able to practice using the telephone calling normally,
and still listen and hear what people are saying.
And I am pleased to say that I can hear most of what people say on the
phone now, without captions. Amazing. People have no idea that they are
peaking to a deaf person on the phone.
When I call Ben or mum, I don’t use captions at all. Ben always whines
now when I call – “Why do you have to call me all the time now!?” HAHA!
He liked it better when I just texted. Now I am calling up to say
things like: ” I am walking down the street! What do you think of that!
I am passing a garbage bin. What are you doing? Look, a bird!”
And as for other news, I have been elected to the board of ACCAN, which
is the Australian Communication Consumer Action Network – this will
mean that I can really make it known what deaf people, or those with
other disabilities will need in order to stay connected in Australia.
For example, people don’t realise that for the Web CapTel trial to
work, it is important that you have a stable internet connection that
doesn’t drop out. If it drops out you may be logged out or your
captions will stop coming through and you will have to reconnect.
Imagine having to do that during an important phone call!
I’ve also been nominated and shortlisted for a 2009 Australian Human
Rights Community Award for work with deafness and disability in
Australia. WOWSER! Doubt I will win (you should see the actual
hortlist! amazing people), but it’s still a hugely great honour to be
hortlisted!
As for other stuff happening with the cochlear implant – I was over at
my friend Georgia’s house the other week, having an ‘infrared sauna’.
She runs a natural therapies studio. She gave me a pamphlet to read in
the sauna so I could see all the good stuff it was doing. At the very
back in tiny letters it said: “Do not use this sauna if you have an
implant i.e. pace maker or silicon.”
And I was like “WHAAAAAAAAT!!!!!??” slapped my hand over my ear, and
jumped out – thought maybe my head was going to explode! I mean, I
didnt have the external bit on, but I thought maybe it might melt my
brain, make it come out my ears, and turn me into a zombie.
It didn’t however (that might have been kind of cool), and I checked
with Cochlear Ltd later – they said that according to their information
from engineers etc, infrared shouldn’t affect cochlear implants (nor
hould any other sauna – good to know!).
Yay for cochlear implants. Such a new invention, it’s like being the
first person to walk on the moon or something. You just don’t know what
might happen when you do stuff that is considered normal! like brains
exploding from saunas. Awesome.
October 19, 2009
Is a cochlear implant really that good?
Posted by Kate under cochlear implant, deaf, Living with deafness |
Tags: after switch on, cochlear implant, cochlear implant surgery |
[92] Comments
Got an interesting comment from someone who’s read my blog:
I am glad you are purporting success with the device, and are such
an active advocate.  Indeed your story is miraculous compared to the
ones I have come across (numbness, tinnitus, excruciating pain from
hair, white noise).  So I am wandering if you are another version of
the ‘cochlear volunteers’ distributing erroneous information for a
kickback your readers are not informed of.  I guess if you publish
this and an accurate answer, I need not be suspicious and outraged
by the ’social networking’ propoganda cochlear will go to maximise
their profits.
Ruth
And I think it’s a really valid comment.
I was extremely suspicious of anyone that told me a cochlear implant
was good before I had one, and for good reason. It’s just hard to
believe how it could be as good as they say it is. And you read all
these blogs, and talk to all these people, and every single person has
a different experience.
I decided to get an implant after I saw a deaf woman I know who had two
cochlear implants talking on the phone. That’s when I thought, oh well,
it might work – and if it doesn’t, I havent lost anything.
After I was booked in for this surgery, I started this blog because I
thought everyone would think that an implant was a miracle cure, and
think I would be ‘fixed’ once I had it, and I knew it wasn’t going to
be like that. I wanted my friends and family to know the truth. ‘Course
the truth turned out to be pretty good for me.  But I didn’t know that
was what it was going to be like.
Perhaps my optimism about the implant has come from the fact that I
really didn’t expect it to be that good.
My only expectation was really that it would  help with my lip-reading.
And I knew that it might not even do that. So I was realistic.
My wish was that I wouldn’t have to lip-read, but I figured that was a
wish only.
So, the bad parts of my experience are few… I was having dinner with
friends the other night in a pub in Perth. We were discussing each
other’s cochlear implants (there were three of us there who had just
recently had one in the past year.)
We were talking about the horror stories, and I mentioned that I
freaked out the day after my surgery when I leant forward and this
rusty coloured fluid came out my nose! Thought my brain was melting!
But it was only a few drops, and then it stopped, so I figured that I
was ok. I forgot to put that in the blog, but I guess you could call
that a ‘bad’ or scary part of the surgery. Actually, that sounds lame.
It was not really blog mention worthy.
So, what other things suck about cochlear implants? because I really
have been too complimentary to them, haven’t I?
Well. let me count the ways:
internal bit. But it’s worth it to be able to hear ok, and I figure
I’ll get used to it. Hey, I’m an eternal optimist. But I must say,
I wake up in the middle of the night sometimes with my ear feeling
a bit numb, and thinking ‘oh god, I have metal in my head’. That is
a bit yuck.
takes a few seconds to press.
tuffed, because getting a replacement internal bit is not
guaranteed to work as well as the first one, because removing the
implant damages in the inner structure of the ear, i.e. the
cochlea. So that is something that is in the back of my mind a lot
– I might lose all this at any time.
ucks, even though I dont play contact sports of any kind – I just
dont like being told “You cant do this any more because …” you
know?
on a battery, that’s $365 per year. They are fiddly little things
too. When I am 100 years old it’s going to suck changing those
things.
Sometimes I can hear TV, other times I can’t. It’s not consistent.
As for Cochlear Ltd being the best cochlear implant company, I don’t
know about that anymore. I mainly support them because they are
Australian, and pretty reliable.
From the research I have done, it sounds like Med-El would be a good
cochlear implant – it apparently has a slimmer electrode, which goes
deeper into the cochlea, and gives you more spectrum of sound, and
therefore makes speech and sound more natural.
I am seriously considering getting a Med-El for my second implant.
But who knows!
So there you go… And what’s the answer to the million dollar question?
Is the cochlear implant really that good? Well, the answer is …. for
ome, yes. For others, no.  It’s as simple as that.
Everyone’s different, and that is probably the most frustrating thing
about a cochlear implant ever. There is absolutely no guarantee about
how it’s going to work.
I was brave enough to deal with the possible consequences, as I was
well aware of the possible outcomes – which was that it might not help
me at all.
It’s scary.
And that’s why whenever you meet someone who’s had a cochlear implant,
or the parent of a child with an implant (because they’ve had to make
the same decision!) you should think about the difficult decision they
made, and no matter what outcome – give them a pat them on the back and
ay: “Respect to you for being brave, mate.”
October 14, 2009
Using the telephone with a cochlear implant
Posted by Kate under cochlear implant, deaf, hearing loss, Living with
deafness | Tags: after switch on, cochlear implant, hearing aids |
This is an interesting one.
Since my last post, I have been trying the phone more and more, and
find that I can’t always hear what people are saying really clearly. No
matter what program on the implant I use, it’s not always clear. Some
days I can hear, other days I can’t. Some people I can hear, other
people I can’t. All very inconsistent.
But I have discovered something really cool.
The first ever captioned telephony trial is taking place in Australia
right now, it started last week, and 100 people from around Australia
were selected to take part after registering.
I am one of them, and I have taken part in the ‘Web Captel’ trial
a couple of times in the last couple of days.
Using webcaptel is so much better than the old TTY phone system. You
can hear and speak normally with the person on the other end, and read
what they say as captions on your computer screen. Awesome.
Basically, the way it works is you must have a computer in front of you
connected to the internet, and a telephone, either mobile or landline.
I’ll tell you how I called my bank the other day:
I visted the website url they gave me, and logged in (you must have a
username and password).
Then I simply typed in the phone number of the phone that was sitting
next to me, and then the phone number of the bank I wanted to call.
Pressed enter…
Suddenly, my phone rang.
I picked it up – there was no one at the other end, but all of a
udden, the website page I had open popped up a text pane, and the
relay officer in Brisbane started typing: “Calling number as requested…
Ringing…”, and then, listening to my phone, I could hear the ringing
ounds at the other end.
“Hello?” I said uncertainly.
“Hello, this is the bank, how can we help today?”
And the words of the other person suddenly came up on the screen in
front of me as I listened to her – word for word.
I squealed with delight!
“I want help with my homeloan please! Eeeeeee!”
“Yes sure… Account number please, and your [brsghsghgh behjhjee and
jsjkdksj].”
Suddenly I had missed something she said, so I waited half a second,
and it soon appeared on my computer:
Yes sure, account number please, and your password and name as it
appears on the account.
Dang! This thing, it worked! I gave her the answer, and then I just
couldn’t contain myself:
“Miss, this is the coolest thing ever, did you know you are talking to
a profoundly deaf person, and everything you are saying is appearing in
front of me in text on my computer? It’s called WebCaptel and it is
oooo cool!”
She said, “Um… what? webcaptel? I’m on your computer? uh… that’s .. ”
then she laughed, “that’s great! … yes, wonderful! …”
And I could hear the smile in her voice. You can’t hear smiles with the
normal Tele-Text Typewriter phones that the deaf use (the ones I
normally use…) because you can’t hear anything, it’s only text you
read, and it’s like a two-way radio.
So this new Web Captel service, I predict, will completely change the
way deaf people use the telephone, and therefore communicate.
It’s also brilliant for practicing listening with my cochlear implant.
If you are interested in reading more about captioned telephony in
Australia, visit the ACE website, or have a read of the ACE Web Captel
user guide.
Today it feels good to be deaf in 2009.
Next Page »
I'm Kate, I work in the online industry, and live in Sydney. I've
had a progressive hearing loss since the age of 11, and am now
profoundly deaf. In 2009, at age 29, I started this blog about
getting my first cochlear implant. More.
Implant’
uicide January 6, 2010
30, 2009
October 1, 2009
Health October 1, 2009
realestate.com.au/416280021 5 months ago
am just so grateful for people out there like you:
thewritersbloc.net/program-captio… 6 months ago
hearing as the next national priority is gathering steam
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tudy finds http://t.co/J… 6 months ago
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twitter.com/BarackObama/st… 6 months ago
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urgery cost of cochlear implants deafness ENT Surgery flying with
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