SwitchOn and The Adventure of Sound

Thankyou everyone for your patience in awaiting this blog post- I have had many emails eagerly awaiting news of Jaime's switch on. I have been overwhelmed to hear of so many that are following Jaime's journey, we have been touched by all the support.

Just over one month ago I watched my precious child undergo surgery to receive a cochlear implant. Our goal, to give our daughter every opportunity to listen, speak and integrate with her peers.

After a successful surgery Jaime was given two weeks to recover and heal. She amazed us with her patience with dressing changes, and her ability to bounce back to her bubbly self within days. At the conclusion of two weeks we ventured to the Cochlear Implant Clinic for an exciting new appointment! Today was to be Switch On Day!!

On our arrival we received our goodie bag of accessories and spare parts- it felt like Christmas unwrapping a suitcase full of bits and bobs- most exciting was unwrapping Jaime's new Cochlear Processor- Jaime's new ear!

Jaime sat patiently as we fitted the processor and I attempted to hunt for the implanted magnet to attach her coil... A challenge I am only now beginning to master.

Then began the moment we had waited so long for... Switch On! 

My husband and I waited with baited breath as the technician began to play the first soft beeps, Jaime's eyes lifted, opened a little wider and looked toward the test screen to watch the dancing characters that appeared. The first responses were subtle, but none-the-less amazing! Although we still have many adjustments and therapy sessions ahead, it feels wonderful to know Jaime's journey to listening and speech is finally ready to take off.

We have now celebrated four weeks since switch on! Jaime has already begun to show some amazing progress. She has become more vocal with some beautiful new sounds, she has shown joy in dancing with Daddy and recognising music, and I have even caught her happily babbling away to herself whilst playing.

She has also developed a new behaviour in the last few days, a behaviour that excites me to no end- when both devices are removed she will cup her ears as if to ask "where has the sound gone?", she has not done this often, however it excites me that she is clearly noticing a difference!

With spring beginning we have taken the opportunity for Jaime to explore her new world of sound. 

The little things have brought so much joy... Just knowing she can hear the ocean and the birds at the park, the sounds that others take for granted!

Jaime's quiet world still exists, however, now Jaime holds the key to a wonderful world of sound!

Jaime's journey toward sound has been at times hectic and emotional, it has been a great comfort to know we have the support and guidance of the staff at Taralye behind us all the way. I always enjoy our visits to Taralye, the warmth of all the staff make us feel at home with people that understand our journey!

With all the support Taralye has provided Jaime it is time to give back. 

You can help Jaime and other kids with a hearing impairment... How? 

Do you want a night out? A three course meal, all beer, wine and chempagne included? Want to win great prizes and partake in a fun auction? Want a laugh from our fabulous comics?

Then the Loud Shirt Day Ball is the event for you!

I am personally hosting this event and have organised this in my own free time, your support will go a long way to helping Taralye get Deaf kids like Jaime listening and speaking.

We still have tickets available:

Individual tickets $120pp

Or a table of ten for $1000

Please see the poster below for more details

Get your tickets Quick! Ticket sales close at the end of September so DON'T MISS OUT!

If you are unable to attend don't forget to support loud shirt day 

You can become a loud shirt day fundraiser like us or feel free to donate via Jaime's Loud Shirt Day Page: https://loudshirtday2013vic.everydayhero.com/au/Jaime 

Surgery Day

It's early and still dark, I pick up my sleeping princess and bundle her into the car... Unbeknownst to her, today is a big day. Driving in to the city none of it seems real, I'm not nervous, not anxious, surprisingly calm.

First we arrive at the wrong building, then can't get out of the car park as we are blocked in by fire trucks... Now I am getting nervous, not for the surgery but will we even make it in on time! Rushing into the hospital foyer I am greeted by the receptionist and our anaesthetist, they smile and make jokes with Jaime, they reassure me there is no stress, we might be late but no-one is bothered... Sigh, thank goodness.

We are shown to our room on the paediatric ward, Jaime is surprisingly joyful, considering we have been fasting all morning. We make the hospital cot her own and she happily plays as we wait for her turn in theatre.

It is not long before the nurse greets us and guides us to the operating theatre- now comes the hard part, handing over our precious girl to the anaesthetist. As the anaesthetic mask is placed over Jaime's face she is no longer recognisable as my bouncing joyful girl, the one with the widest smile and cheeky grin, she has become a tiny fragile doll... as her eyes close I give her a kiss and the nurse lifts her from my lap and I now have to leave her.

Now it's real, now I am nervous...

Sitting in the hospital cafe the two hour surgery feels like all day... I try distracting myself, writing, a hot drink and a snack (not that I feel like eating)... But it's hard not to count the minutes until I get to see my darling Jaime again!

After what has felt like a lifetime the surgeon greets me up on the children's ward, it feels strange sitting in her empty room waiting... The surgeon smiles... The surgery has been a great success! I am handed a small x-ray showing Jaime's new implant- strange, however, I cherish this image as it is the first image of my daughter post surgery.

Jaime is still in the hands of the anaesthetist waking from her sedation, my wait is not yet over.

Another 15minutes crawl by... Finally I am guided to recovery to be reunited with my darling angel. Before I see her I can hear her, she is crying- a reassuring sound after waiting for her for so long... The anaesthetist places Jaime into my arms, I am reminded of how fragile she felt when I held her for the first time at her birth, in a strange way this is her rebirth into the world of hearing.

Jaime spends most of the remainder of the day sleeping or cuddled in my arms, understandibly she is cranky, but sleep will soon fix that!

3am and Jaime wakes, for the first time since the surgery I am greeted by her signature smile. Her bright eyes tell me she is ready to play (my eyes are barely staying open! Mum needs more sleep!)

Jaime keeps the nurses amused by helping out at the nurses station, smiles all round on the ward tonight!

Once Jaime tires we return for a few more hours sleep before discharge the next morning, we are keen to get home and begin our recovery and countdown to our 'switch on' day!

Two weeks later and our countdown is almost over! Jaime has recovered well... She has also been busy learning to stand all on her own (nervewracking just post surgery on her noggin!) Now we just need her ready to learn to hear!

Tomorrow is 'switch on' day!! The day we have been working toward for the last 9months!

Bring it on...!

**Quiet world mumma has also been busy, for some mad reason I felt now would be a perfect time to arrange a "Loud Shirt Day Ball" to raise funds for Taralye!

For more details and ticket sales please visit www.facebook.com/jaimesquietworld

Help other kids just like Jaime!

An Eventful Month

I have been away from writing for a few weeks, Jaime has proven to be a great distraction! Between two new teeth (she now has a total of four), learning to command crawl, beginning to "baby babble" (amongst the many new sounds, dadada has made her Dad very proud!) and an overseas holiday we are also expecting Jaime's Quiet World to soon get a little louder!

Four weeks ago we found ourselves back at the Cochlear Implant Clinic for further hearing tests. You may recall, we left our last appointment disheartened that Jaime may be left to fend for herself with less than ideal levels of hearing... At the conclusion of this test I held my breath as I asked the burning question, the verdict... I am excited to report Jaime is officially eligible for a Cochlear Implant!

We couldn't be happier with the news... to those with hearing children this may seem an oddity, to be excited that our child is eligible for surgery to implant a medical device... to others with deaf children... we are being granted the gift of hearing!

For us this was the perfect way to kick off our holiday. My husband and I bundled up Jaime and jumped on a plane for 15hours to LA.... Mad I know! Aside from juggling seven bags between us (four of which belong to the smallest family member) our flight was pleasant, Jaime took to flying without any hassles and straight away began making new friends.
Once in LA we hired a car and drove to Vegas... As soon as we hit the bright lights of the Vegas strip Jaime was in awe... I don't believe her eyes could have opened any wider to take in her surrounds!
Over the next two weeks Jaime continued as she had on the plane... with her infectious smile she would stop every second person in the street, ever other, would at least smile in return. (I think my husband and I are finally sick of hearing "ooh, look at that baby".)

Most of the time Jaime was able to enjoy both the sights and sounds of the Vegas spectacle, however on occasion her lack of hearing was advantageous. During nap time the loud music of Fremont street went largely unnoticed (although one really loud finale did elicit a brief eye opening). Also whilst we tried our hand at indoor skydiving the staff warned that the sound within the viewing area upsets most babies, Jaime happily watched on as 'Mum' and 'Dad' attempted to look graceful flying above a giant fan.

After nine nights in Vegas with a 7month old we thought we had made it through our holiday relatively unscathed... however...
On the final day of our holiday, drama struck! after 6months of close calls we have finally lost our first hearing aid... I am still holing on to that final tread of hope that it may be located amongst our bags, however I have a feeling I will be making a call to Australian Hearing on Monday morning... oops.

Now that we are home we are ready to embark on the final few steps before Jaime's surgery day.
Late June Jaime will have an MRI/CT scan to ensure the structures of Jaime's inner ear are well formed and suitable to receive the implant. Once we have the results from these scans (hopefully by early July) we will meet with the surgeon to discuss and sign off on the surgery... Then all that is left, is to wait on a surgery date.

Easter Holidays

Firstly a big hello to all my new readers! Over the Easter break I was thrilled to have been given the opportunity to share my blog with a growing community of parents with deaf children via the Aussie Deaf Kids newsletter. Aussie Deaf Kids is a great resource providing support and advice to families who are raising a child with hearing loss, I hope that by sharing our story with you, we too can help support you on your hearing loss journey.

After a very busy lead up to Easter with trips back and forth for Genetics appointments, Australian Hearing and Cochlear Implant Clinic hearing tests, we have enjoyed a well earned break. I am thrilled to report that we have noticed some positive changes in Jaime's responses since the adjustments were made to her right hearing aid. Her right hearing aid, initially set to 70DB has now been increased to 85DB, immediately we noticed that Jaime would pause when her name was called, she also appears to take note of loud environmental noises. Despite having hearing aids fitted at 7weeks of age, these are the first 'real' responses we have seen (aside from startling to very loud sounds).
After my rather miserable last post, I am again feeling upbeat, looking forward to Jaime's future.


Changes in Jaime's responses to sound haven't been the only celebrated developments over the past few weeks, we have taken great joy in watching Jaime learn to sit unaided, roll across the room to get to her favourite toys and take more of an interest in the world around her (including making friends with the family cat).

Jaime has also hit the 6month milestone! Hooray! I cant believe how fast the time has gone.
We have 'graduated' from Baby Play swimming to 6month old classes... After a short break for Easter it was great to see the joy on Jaime's face as we plunge back into the pool, I did note however, that in these more structured classes Jaime seems to 'zone out' during the songs and nursery rhymes. Whilst the other babies in the class seem to take joy in the silly songs and action words, Jaime misses out... at this point in time I am unable to assist with any sign as I have my hands full, as Jaime continues to progress we will develop our own way to communicate in the pool. I do need to stress however, that Jaime still LOVED her class, her face lights up whilst splashing around in the water (I have a 'proud mum' moment whenever someone comments on how at ease Jaime is in the water)

Taking a break from all of our appointments has reminded me that Jaime is just like any other baby, although I hate to admit it, with the constant reminder of specialist visits, it is hard to see past the fact that she is Deaf. This past few weeks I have been able to focus more on her regular milestones and marvel at how far she has come from our 'not so small' 10lb4 baby girl.

Good, Bad, Confusing...

Yesterday was an important day for us, our first hearing test since Jaime's hearing aids were fitted at 7weeks old.
Jaime, now 5months, has been flourishing, she is a bright, bubbly girl with bright blue eyes that never stop taking in the world around her. However there has been one question looming over us as we have watched her grow... How much has Jaime been hearing?

Monday morning, we arrive at Australian Hearing and are led to a small room with a thick blue door, my first impression was of being led into a submarine, a new world...
As the three little electrodes are attached to Jaime's head the anticipation builds... It feels like forever since that first hearing test 4months ago.
Today we were testing Jaime's right ear (moderate-severe loss) with her hearing aid in place, testing was done across low, medium and high frequencies of 'speech' sounds at 65db (equivalent to medium conversational level) to determine if she is hearing us talk.
Only seconds into the test I am asked what feels like a very weighted question, 'are you expecting her to respond?' I don't really know, I would love to say yes, she smiles and laughs with us, but if I am really honest with myself I have become increasingly sceptical if Jaime is really hearing much at all. Seems that this was all the technician needed to hear... She paused the test, Jaime was not showing any response to the 'speech' band of sounds. My heart sank... I felt as though we had just been shunted all the way back to day one... This was our bad news.

Good news... After increasing her hearing aid by 15db (now set at 85db) Jaime showed responses to all the speech sounds! Woo Hoo, she is finally hearing!

Now the confusion... This 15db increase might be too loud. This is something I find difficult to get my mind around, how can her hearing aid now be loud enough to hear speech but also be too loud? We face a situation where, although finally allowing her to hear, we may have to turn her hearing aids back down. If day-to-day noises begin to startle or irritate Jaime we may face the dilemma of turning off Jaime's hearing.

Despite all this, I left our appointment on a positive... We have confirmation that Jaime can hear us, and already we have noticed a difference. Today we hit a big milestone! For the first time when Jaime began to cry, whilst still out of sight I called her name... She paused... Stopped crying for a moment... For us this is huge!

Good, Bad, Confusing...

I'll focus on the Good for now.

Jaime; an active baby and new challenges

As Jaime grows we enjoy many firsts; 
first smile, 
first time rolling 
and her first sounds. 

For a baby with deafness this is a delightful moment hearing her first coo's and first giggles, however the doubt always sits in the back of my mind, that little elephant that weighs on your every thought... Can 'she' hear what she's saying?
This question alone can bring me to tears, I, like any other parent sit and listen to my baby coo as she smiles at me, my heart skips... I am filled with a warmth that only a parent knows... my heart sinks a little; what if she can't hear these wonderful sounds she is making? How would I feel if she fell silent? Now My heart breaks a little... all it takes tho, is a giggle and a wide bright smile to look up at me and my heart is mended, at least for now.
At what point will her leaps and bounds in language slow or even screech to a halt? Will she learn to communicate? Will I ever get to enjoy the back and forth of baby banter?
These are questions we can not yet answer, these are answers that will be slowly unfurled as we continue on our hearing journey through Jaime's quiet world.

Right now our biggest challenge is keeping hearing aids on an increasingly active and curious baby. Turn away for a second and hearing aids get chewed and thrown, on many occasions I have had the frantic search to spot Jaime's small purple aids lying under her, or tucked into the carseat... Every time, relief that this time they have not become an inadvertent meal.
I purchased a basic baby bonnet from early intervention in Brighton...
Perfect! No more lost hearing aids. 
Not-so-perfect... The very medical, stark white bonnet. 
This set me on the quest to find an alternative, store bought headbands worked for a while, however, soon these too were being flung aside by tiny hands, or if the headband stayed in place little fingers would find their way under the band to grab the hearing aids anyway!

Next...
A solution, my own prototype 'hearing bonnet', not just a necessity, an accessory