Gearing Up for Surround Sound

Today I sit and reflect having just passed the halfway point between Jaime's surgery to receive her second Cochlear Implant and her second side "switch on".

Two weeks ago our home was filled with an air of anticipation and the usual anxieties that go along with watching your precious child undergo surgery.

Sunday evening Jaime was very exited...

"I go to the hospital when the sun wakes up..."

Yes

"I get my new Coc-ear Im-plant?"

Yes, Jaime, you get your new Cochlear Implant

"I get two Coc-ear Im-plant?"

Yes Jaime, you will have two Cochlear Implants

"Yay, Woo-hoo! Yippee!"

The undeniable joy expressed by Jaime at not even 3years old is inspiring. It's hard to know how much to explain to a 2year old about her upcoming surgery, however, its clear that she has a reasonable understanding and is becoming very excited!

Jaime is able to tell anyone that asks (and for that matter anyone that will listen!) that tomorrow is the day she gets her second "Coc-ear Im-Plant" and that first the doctor will give her some "special medicine" to make her sleepy.

The process has certainly been helped along by the fact that a very special friend of ours, Hamish, underwent Cochlear Implant surgery only a week prior. We visited Hamish in the hospital and discussed how brave Hamish had been; Jaime was able to see the drip and the head bandage that she too would be wearing in a weeks time. These two toddlers share a special bond that us as their parents will never understand, they share a special world all to themselves and take great comfort that they are not alone, someone else is the "same-same".

Time had come for Jaime's turn, we woke early and jumped in the car (much to Jaime's amusement as for some reason the sun had forgotten to wake up), and began the long drive to the hospital. Jaime coped incredibly well and was very accepting that we were not allowed to have any breakfast today (she may have been promised a chocolate frog post surgery... hey bribery... I mean, incentives... are sometimes more than appropriate). 

Once we arrived at the hospital Jaime marched through the front doors with her head high, clearly proud about what was going to happen today. We were shown to our room on the children's ward and settled down to some morning TV whilst awaiting our pre-op meeting with our anaesthetist.

Jaime falls into the category of an "institutionalised" child, sounds awful doesn't it! The term (one I don't really like, but I don't choose these things) refers to a child who has undergone multiple hospital admissions, surgeries and procedures. For these children they can either be confident in a hospital setting as they know the ins and outs, or they can be highly sensitised, carrying a fear of doctors, needles and procedures. Our anaesthetist was absolutely amazing, she started with a phone call the evening before surgery to discuss how Jaime normally reacts in hospital and how best to prepare her for surgery. The morning of surgery the anaesthetist met with us and introduced herself to Jaime and assessed if there was a need for a Pre-med (a relaxant to reduce anxiety), to her surprise Jaime was confident and ready to go. Satisfied that Jaime was ready for her turn in theatre the anaesthetist left to prepare in the operating room. I was handed a hat, gown and booties to wear so I could accompany Jaime.

Jaime and I sat on the edge of the bed, my little 'baby' all smiles (and giggles at mummy's "funny hat"), swinging her legs in anticipation. Around the door frame appeared a smiling face... "Ready to go?" chimed the nurse. Jaime jumped up and took the nurses hand and marched her down the hall to the lifts and into the operating room.

We were sat on a chair amongst tables of 'blue sheets' covering all the sterilised operating equipment, I felt small in the middle of that room, and would expect a small child to feel tiny; not my little girl however, like her father, she saw this as an opportunity to be the centre of attention! She was boss! "I do it!" She took the anaesthetic mask and placed it over her own face, smiling the whole time she drifted off to sleep, gradually becoming heavy in my arms.

With a quick kiss I left my baby girl in the capable hands of the anaesthetic team and her amazing surgeon.

Two hours ticked by, each second seemingly taking two. Although time was dragging its heals I felt surprisingly calm, reassured that my daughter was safe. At the two hour mark her surgeon came and met with me, the surgery was deemed an overwhelming success, placement of the electrode was as good as you could ask and the in-operative check of the electrodes showed that they all registered as expected. An hour more passed before I was able to head into the recovery room to see my child, check that she was indeed 'OK' with my own eyes. I scoured the recovery beds, glancing over half a dozen adult sized lumps of blanket, sleeping off their anaesthetic. Finally my eyes fell on a familiar figure, a little doll curled up peacefully, sleeping, resting. I enjoyed some lovely conversations with the nursing staff whilst we waited for Jaime to wake enough to return to the ward.

The next five hours where the hardest, disoriented from her surgery and uncomfortable from the pain we enjoyed cuddles broken by amazingly spectacular toddler tantrums! Not least of which was the demand for sandwiches, who would blame her, she hadn't eaten all morning; we certainly didn't have to worry about getting her appetite back. At the five hour mark we had a breakthrough, with a dose of strong painkillers the tantrums were banished and in their place emerged our fun loving girl. This marked the last of any evidence that she had just emerged from over 2hrs of surgery (aside from her large head bandage of course!)

After an overnight stay it was time to head home, Jaime was again in high spirits and in charge of her own suitcase ("Mummy, I do it"), happily trundled past the rest of the ward exclaiming "Hab a nice Day!!"

The following day we dropped Jaime's brother (BabyB) off at daycare to have a mummy and me recovery day. Whilst there Jaime was eager to go and visit her friends and wanted to stay and play, with a frown I had to tell her it was a 'stay at home' day, but promised she could return next week. It's truly amazing how quickly kids recover.

Now two weeks down the track we count the days until her "other ear, other Coc-ear Im-Plant" is switched on. 

During this time we have busied ourselves (4weeks feels like forever when you are excited!) We made the decision to share Jaime's headbands, that she has used throughout her journey for her Hearing Aids and Cochlear Implant, with the rest of the world. Sewing is a distraction and a hobby for me and I have taken much joy in being able to help both children and adults feel confident in wearing their hearing devices. Its a seemingly small thing that has turned out to mean so much to those that have received a headband.

The headbands have taken on a new role too, one that was unexpected but absolutely has made me smile (and shed a tear or two). During the process of making the first headbands I was asked to make a few special requests, these were for some very special mums, dads and siblings to have 'matching' headbands and bandanas. 

For our CI recipients headbands can play a much bigger role than a decoration, they serve as a vehicle to encourage recipients to wear their cochlear implants, whether that be in the early days when the processor is new and daunting, or further down the track so that a child(or adult) can partake in activities such as sport without worrying about their processor falling off. 

These families were able to show their kids that if mum/dad/sister/brother are able to wear their headband with confidence so can the child.

I was absolutely moved to tears when a beautiful daycare centre took this a step further. When they heard that Hamish (our little friend from earlier) was having a hard time adjusting to his new CI they surprised him, when Hamish arrived at daycare, all the staff and children were wearing headbands and bandanas to show him support and encouragement, at first he remained hesitant, but as the day progressed, success! Hamish finished the day by wearing his bandana and CI! I love to see our community rally together at support each other.

I can only hope that we and every other family traveling this journey can experience this same community support. It takes a village to raise a child.

We love including you as part of our amazing 'village' and I encourage you to share your story so that others can feel less alone. I also encourage you to reach out via your Cochlear Implant Clinic, Hospital, Audiologist or Early Intervention service, ask to find a family that is travelling your same journey. Don't sit silently in the waiting room, talk to the other parents, they are probably itching to say hello but may just be shy; if you get the chance to meet another child that is undergoing their CI surgery, see if your child can be involved to show them that it's 'OK'; band together and create the village you want to see raise your child.

Take care... We will be checking back in after Jaime's 'Switch On'

The Dating Game

Woo Hoo!!! We have a date!

Just Chillin'

Wednesday morning we dropped BabyB at childcare and trundled up to the city to meet with Jaime's ENT surgeon.

As we walked the ice cold city streets toward the hospital, Jaime and I shared an air of excitement...

We entered the waiting room,  Its glass and mirrored walls always reminds me of a fish tank; a holding ground for a wide variety of fish, all bobbing around awaiting their turn to be plucked from the tank. Sometimes the tank is full of old fish, and sometimes its a school of baby fish all fighting for prime position around the treasure chest of toys, sometimes you could swear a shark was on the prowl with all eyes fixed on the waiting room door, everyone in staunch silence.

Today it was a beautifully vibrant mixture, a tropical assortment that were more that happy to socialise and share stories.

I love seeing the different stages of the cochlear journey all in the one place, each supporting the other.

From those anxiously waiting for their first appointment, wondering "is this for me"; to those waiting in anticipation for their green light; then others who have taken their first tentative steps into the hearing world, to the experts that have been up and running for years.

The 'experts' are reminded how far they have come and the newcomers get to see how much they can achieve, its beautiful.

We are in-between, on one side we are entering the realm of seasoned pro, wonderful progress through the use of her CI, a fabulous example to others; on the other hand, we too are again newbies, taking our first unknown steps into the world of bilateral implants.

After 1hr20 of waiting (yep, our ENT was running just a tad late) we had watched the fish bowl slowly empty until Jaime was a lone goldfish racing laps around the now spacious bowl. Finally her name was called, finally it was time to sign the dotted line ready for hospital admission in less than two weeks time. Our date is set, June15 will mark our entry into the bilateral CI world.

Despite all the waiting, our appointment was brief, 5minutes later we were on our way. As we departed the office our ENT quickly checked if we were aiming to preserve Jaime's residual hearing or not, without too much thought my response was "as long as we get a good electrode placement, what will be, will be".

That night I tossed and turned, I like to think of myself as the fact finding sort, I like to be informed, yet I had rather flippantly brushed of the question of hearing preservation. After battling for approval for this CI you would think I would take this a little more seriously, should I indeed be pushing to preserve what little Jaime has left? Is one electrode better than another? I didn't want to regret my choice.

I made the call to our ENT, I didn't really know what I wanted to ask, so I just blurted something about making the right choice.

I was glad I picked up the phone, our ENT was fantastic and talked me through the electrode selection.

Jaime is a candidate for both the Contoured and Straight electrode arrays (some recipients will be restricted to one or the other due to their anatomy)  for us, there was somewhat of a choice.

The straight array is fantastic, it is thin and flexible enabling it to curve passively through the cochlear along the outer wall, the hair cells that will pick up the sound signals line the inner wall of the cochlear, so by avoiding the inner surface the straight electrode is less traumatic and therefor has the ability to preserve any natural hearing that may be present (not guaranteed but more likely).

The only downside is that due to the position of this electrode it requires a higher power input to bridge the gap from the electrode to the nerve endings, occasionally this restricts the ability to stimulate the deepest hair cells that are responsible for low frequency sounds (your bass sounds).

For those aiming to preserve hearing, the hearing they do have left normally resides in those lower frequencies so this type of insertion makes sense.

Image from: Slide Share

Although Jaime has a little hearing left, it has been gradually dropping and therefor in the next 10 or so years its feasible that she won't have any residual hearing anyway, so what would our reasoning be to try and preserve it for 10years?

The idea sounds great, leave her with 'something' for those times when she can't wear her CI; tho, she doesn't use that sound now so she isn't really about to start.

So, what about the contoured electrode? This is the big sumo when compared to the Slim Straight electrode, its fatter and not so delicate as it passes through the cochlear. The Contoured electrode is exactly that, contoured, it is pre-shaped to follow the tight spiral of the cochlear.

This pre-shaping means it is able to hug tightly against the inner surface of the cochlear, placing it in direct contact with the hair cells and allowing for it to reach deeper into the cochlear, this also means that by stomping its way through the cochlear it is likely to destroy what hearing is left.

As a quiet world mumma I will always worry about making the right choices, I want Jaime to have nothing but the best! In this case, the stomping robust Sumo wins over the agile Slim electrode array.

Bring on June 15th!!! We are ready to tackle implant number two head on, we are ready for the joys and the challenges.

Always ready to tackle everything with a smile!

Some of you may wonder where our quiet world daddy is through all this. He is here, he lurks in the background chiming in when he can, he tries hard to learn about this whole new world and is amazing with Jaime. He is Jaime's light, her clown and superhero. When it comes to the technical side, lets put it this way... He never knew there was more than one type of Watermelon (incase you weren't aware, there are thousands of watermelon species!) In his mind you could either hear or you couldn't, there weren't all these different types of hearing loss, and there certainly weren't different types of implants! Boy is there a whole new world out there he could get lost in!

The Free Spirit takes off

"I used to enjoy reading that blog you were writing"... This statement only days ago made me realise again I have left a rather hefty gap between posts.

My current days are consumed by feeds, nappy changes, silly faces, raspberries, colouring in, dancing, swimming; and sometimes, quite simply, all out mayhem. Somewhere amongst this all we fit in our Audiology appointments, Auditory-Verbal Therapy and follow up ENT visits to ensure Jaime is infection free after her time in the Children's Hospital late last year (see 'Leaps and Bounds').

I am please to report that Jaime has the official all clear from her ear infection- we are so thankful for the swift and aggressive treatment we received from the RCH, it means our beautiful Jaime is able to continue her enjoyment of sound!

At Two and a half years old Jaime is an incredible free spirit that carries a light and joy with her that is infectious. As parents we all expect to glow at our children's achievements and antics, somehow I feel she is different, she has the ability to change your point of view, brighten your day and make you smile simply by existing.

To let Jaime's free spirit roam we have begun dance lessons, when we walk into that dance hall and the music starts I am taken back to November 2012; Jaime was only 4weeks old, I was trying to wrap my head around her deafness, trying desperately to imagine what her life was going to be like, what options she was going to have. 
I dreamt of doing all the normal weekend sports and activities and I was determined that we would participate no matter what. 
What I didn't imagine was my daughter enjoying every note and every beat with such clarity; my daughter with not only the special place of her Quiet World but also access to the WHOLE world of sound! (See Jaime dancing here)




As we grow through this hearing journey Jaime takes greater responsibility for her processor and her own hearing. Every morning I wake to the sing-song "mummy... where are you...", as I enter Jaime's room a bundle of energy leaps off the bed toward me... "EAR!! EAR!!", Jaime is ready to enter the day hearing every sound! She now takes so much pride in her CI that she insists on replacing the coil herself (my big girl) and will not remove her processor unless its on her terms. I respect this, I want her to feel that both her Quiet World and her Hearing World are hers. She loves hearing so much that her processor won't come off until the very last minute before bed; however, she enjoys some quiet moments too... if she is tired or overwhelmed I will find her small white processor pressed gently into my palm, with a gentle smile Jaime will snuggle into my chest for a break... my snuggles never last long tho, after a few minutes its back on with her processor and my whirlwind child takes off again!

Through this increasing independence we have also reached a point where we cannot deny Jaime's signals any further... Jaime (yes, a 2.5year old) wants a second CI. 
Jaime flat out refuses her Hearing Aid these days, however everyday she asks for an "ear" whilst pointing to her right (non-implanted) side, when I make an attempt to put her HA on she takes it out stating "no... no like it" followed by an attempt to put her left processor onto her non-implanted ear.
We also noticed a more pronounced lack of response when she is wearing her HA, she is unable to localise to sounds and is unable to understand us when wearing her HA alone.

So amidst the chaos of our already busy life we made the 2+hr round trip into our Cochlear Implant Clinic for final hearing tests to find out if they will consider a second Implant for Jaime. We knew her hearing had deteriorated, and as awful as this sounds, we were hoping her hearing had declined 'enough'. Throughout the testing I was nervous, preliminary hearing tests at our local Audiologists had already shown a decline in hearing, however Jaime was always distracted so I was worried they weren't accurate. This day, Jaime was focused, she took her 'play' task very seriously and was trying so hard to hear the test sounds. Sitting in the background I thought she was responding very well, she seemed to respond instantly every time. When the audiologist finished collecting her results I was sure she was going to tell me that the previous "loss" was a fake and Jaime was indeed still hearing at 70db, instead she greeted me with the news we were hoping for... with hearing tests alone, disregarding behavioural clues, Jaime was now a clear candidate for her second implant, her results emerged at 95-85db. YAY! We are now eagerly awaiting our ENT appointment and our meeting with Jaime's Implant Clinic case worker to dot the i's and cross the t's in our expectations for the second CI and to hopefully book in our surgery date!

We are realistic, given there has been 20months past since her first implant, Jaime will have to learn to hear all over again. She may not achieve the same clarity as her first CI and the sounds may not "meld" between the two. However, she will have an increased ability to localise to sound and if all goes well she will get to experience the joy of her hearing world in Stereo!

I cannot wait to report back in another week... so stay tuned...

Leaps and Bounds

You may have noticed our blog has been dormant for a year now; Jaime's progress however, has most certainly not!

Jaime's second year of life has been no less eventful than her first. J has now had her CI for 15months, it has melded to become part of her, part of who she is. J wakes up in the morning bright, bubbly and ready to play, amongst her morning routine there is always a request for her 'ears', she takes such joy in the sounds around her. Sitting in her room her ears prick; What's that? Who can she hear? "DADDY!!!"... J races down the hall to the next room and leaps into bed to give daddy good morning cuddles, I can't help but smile, this is my little deaf girl, the girl that started in a Quiet World.

Awaiting our new arrival

In August our cheeky J became a big sister, the most loving and doting sister you could wish for. This has however, called for a large adjustment and has heard the introduction of every two year olds favourite word.... 'NO'.... "No, No, No, No, NO!" (especially at bedtime), luckily most of the time she is a charmer ready to try and make you smile.

Newborn Hearing Screen for Baby B

Shortly after our baby boy arrived Quiet world mumma and daddy waited with baited breath, the familiar little cups were unpacked and ever so gently placed over two tiny ears, baby B lay peacefully unaware... as carriers for the Cx26 gene, baby B had a 25% chance of being deaf like his big sister. I was undecided, I was torn, on one hand I wanted J to have a sibling that would share her journey, a special bond, on the other hand what parent would wish an extra challenge on their child. With his newborn hearing screen complete we had our answer, baby B had passed. I have to admit, I actually felt a little strange talking to my new baby knowing he could hear me, my normal had been a deaf child not a hearing one.

Saying hello to Baby B

Kisses!!!

September arrived and it was time for our one year CI review. At 23months old Jaime had now been implanted for 13months, she trotted in, the usual smile spread across her face. Over the course of two communication and language development scales her speech, vocabulary, understanding and social interaction were assessed... of course as your typical toddler she didn't perform all of her abilities on cue (frustratingly so, because anecdotal evidence from parents was not allowed to be used for this assessment) however two weeks later her review results were in...

Chronological age: 1year 11months

Hearing age: 1year 1month

Speech and Language scores: 1year 11months and 2years 1month!!!!

Not only had she shown speech and language skills appropriate for her age, she had even managed to nudge ahead. 

As any parent of a hearing impaired child knows, half the battle is to catch up to their hearing peers... We are so thrilled Jaime has made it, our hard work is paying off. The work isn't over of course, Jaime will still need regular speech therapy and her learning and listening environment will always have to be monitored to ensure she continues to keep up with her peers.

To top of the trio of celebrations we celebrated J's second birthday at a large play centre, a big hall, kids everywhere, air cannons in the ball pit and a compressor running the jumping castle... a nightmare of sounds, yet Jaime loves it, she races around the tunnels and climbing frames, even without her FM system she responds well and comes racing back when birthday cake is announced ;)
*the biggest achievement of course is to make it out of there with both her CI and HA still on her head!





Unfortunately our high spirits weren't to last long. not much more than a week later I woke to every CI parents nightmare, Jaime, who had been battling a cold for a couple of weeks woke grumpy and lethargic, I took her temperature... 40C! Oh my, well we certainly weren't going to daycare today... then I tried to place Jaime's coil, she yelped and refused to let me put on her processor, this was certainly unusual behaviour for my little girl who loves to hear. I swept back her hair and there behind her ear was a large swelling, hot and red.... My heart leapt... what do I do! The phone calls began and soon I was packing my precious little girl and baby boy into the car and heading in to our local hospital. Once there J was immediately started on intravenous antibiotics, her ENT was contacted and the decision was made to transfer her to the Royal Childrens Hospital (RCH). At this stage I was still unsure what was going on, I knew J had ended up with an ear infection (her first.. she doesn't do things in halves!) and I knew she required some more IV antibiotics, what I didn't know was what was in store for my Jaime.

By early evening the ENT team at the RCH had seen to Jaime and the decision was made to call her ENT surgeon in for emergency grommets to drain the infection from her ear. Just after midnight Jaime was heading into theatre (something I didn't think I would have to contend with again) I barely had time to think about what was happening as I found myself again cradling my baby girl to sleep under the watchful eye of the anaesthetist.

A special visit from bestie T

My husband and I sat in the empty hall (with baby B who had patiently been dragged along for the ride), an hour later Jaime was out of surgery and awaiting us in recovery, her ENT only now filled us in as to the severity of her infection... the grommets were draining well, however the next few days would tell if she would loose her implant or not... I knew this was a risk, however so far no one had let on that this was a real possibility. Jaime's ENT would see us in two days time to see if further surgery was needed, in the meantime J was to be admitted to the hospital for intensive IV antibiotics.

Two days later and thankfully J's infection was beginning to succumb to the antibiotics (I would really hope so as she was on a duo of antibiotics every two hours!), she wouldn't require further surgery for now, wow what a weight lifted!

Good morning Meerkats

Over the next seven days we got to know the RCH well, we made daily visits to see the meerkats and the aquarium and stopped off for an obligatory play at the fa-fly (Butterfly) that adorns the statue in the main foyer of the hospital. No-one wants to endure a hospital stay, even less when its for your child, however I began to enjoy our time at the RCH, there is something warm and inviting about their bright sunlit wards and the halls and foyer are grand and somehow uplifting. The playgrounds are filled with children attached to drips, bandaged or in wheelchairs but all with a smile on their face! Surrounded by so much ailment somehow this hospital achieves an air of positivity and peace.

Exploring the RCH sculpture

Not a bad view for a hospital

No, it's not a bear!!!
Meeting one the RCH therapy dog's

Daddy brought J some
POPCORN!!

Our final day arrived, once again Jaime was to head into surgery, this time to place a central line (a drip directly into the large vessels in her chest), we were heading home finally, but Jaime had to continue with daily IV antibiotics.

For us this meant daily visits to our local hospital, although much smaller that the RCH, the staff made us feel welcome (it helped that Jaime walked in everyday with a big cheery 'elo!! and her signature grin). Jaime impressed me over the next 3weeks, as we arrived on the paediatric ward she would strut down to the procedure room, jump on the bed (request the usual bubbles of course) and then proceed to instruct the nursed on how to take her vitals! She would make a brilliant little nurse one day!

Taking mummy's
blood pressure

Strutting into hospital like a rockstar...

Finally we catch up to today... Jaime has been off her IV antibiotics for a few days and we have begun her long course of oral antibiotics (3months worth!) she is bright and happy with all signs of infection at bay. Her CI is functioning well and her speech is continuing to flourish.



What about her Hearing Aid I hear you ask? Now thats a whole new kettle 'o fish...


Having been away from my blog for such long time don't forget to post your comments or questions below...


**In light of our recent hospital stay I wish to encourage you all to not only support our major children's hospitals such as the RCH, but also consider popping in to your local paediatric ward and seeing what you can do to help. These wards in our local hospitals tend to get forgotten, we all see the big fundraisers like the Good Friday Appeal, and those funds are certainly put to good use, however it was eye opening to see our local paediatric ward holding a raffle simply to afford a wheelchair.

Our final goodbye to the RCH Fa-Fly...

...and the big fish

What a Year to Hear!

For parents all over the world celebrating their child's first birthday is an exciting milestone.

For us, Jaime's first birthday was not only a time to celebrate the first year of her life, but to also reflect on 365 days of challenges, setbacks and most of all achievements!

I can still recall Jaime's birth as if it was yesterday, after 9months of growing my daughter, feeling her kicks and imagining what she might be like once born, imagining what her life might hold, the time had come to meet her, hold her in our arms.

After a relatively quick 5hr labor my husband and I welcomed Jaime into our lives, into our family.

Looking at our precious baby she was perfect, the usual count, ten fingers and ten toes, she was as healthy as you could wish for. 

At two days of age an audiologist from the royal children's hospital attended to perform routine hearing screens on Jaime. I didn't think twice, the past two days I had witnessed midwives and nurses perform routine health checks, simple, quick and uneventful. 

Again I expected the same, I took the opportunity to sit and put my feet up for a moment, a rare oportunity when looking after a hungry newborn. After a few minutes I began to realise something was not quite right, the audiologist continued to readjust Jaime's little headphones, massaging Jaime's ears in an attempt to shift any fluid that might be present. Once the test was complete the nurse informed me that the result was "inconsistent". 

Inconsistent? What did that mean? I was told that it was possible fluid was congesting her ears and not to worry, they would re test her tomorrow. Again tomorrow came and again Jaime did not respond to sound. I was in tears, I will blame some of the tears on post pregnancy hormones, but I need to be honest, despite all rational telling me that this was no big deal, in my mind it was devestating, the possibility of my daughter being deaf seemed too much to comprehend. 

Over the next four weeks I had a lot of time to reflect, amongst the sheer amazement of watching and holding this beautiful baby girl, coming to the realisation she was all ours, was the slow acceptance that she may be deaf or hearing impaired. Over the days and weeks my husband and I began to recognise the signs... Jaime didn't respond or change her behaviour when we spoke or sang to her, she didn't startle, even when at a party she was oblivious when fire crackers were set off only meters from where we sat with her. Everyone would comment on how calm and layed back Jaime was, my husband and I on the other hand knew that something was wrong with Jaime's little ears.

These four weeks were therapeutic for me, to the extent that when at four weeks of age, after a 4hr audiology appointment, Jaime was diagnosed as sever-profound hearing loss, I was accepting and calm... I was ready to leap in with both feet, ready to do what it would take to help Jaime be the best she could be.

I began reasearching Auslan, hearing aids, cochlear implants, speech therapy and early intervention services. We were ready to accept Jaime's deafness whole heartedly (although at different times for my husband and I there were stumbling blocks and days of denial) and give her every possible opportunity in life.

At seven weeks of age Jaime was fitted with her 'purple pair', her first hearing aids. The following months were filled with a mixture of achievement and set back. It took five months before we realised that Jaime's hearing aids were not loud enough, 5months of wearing these devices and not gaining the speech sounds she desperately needed. After an adjustment we were back on track as well as on our way to receive a Cochlear Implant.

At 7 months Jaime and I ventured to the Royal Children's Hospital to undergo an MRI, our first big step towards the miracle of a cochlear implant, then finally on August 1st, the day arrived for Jaime to take a huge leap, the day of Jaime's surgery.

Two weeks later and we had lift off, switch on, sound! Since that day, since her CI was switched on Jaime has made leaps and bounds, she has amazed us everyday, new responses, new sounds, even a daily dance with daddy!

Now my baby girl launches into toddlerhood.

I watch this wonderful child and everyday am proud to be her mummy, she will always be an inspiration to us, and I hope to many more. I always knew my daughter would be special, I just never realised how special!

With love and Birthday wishes to my Jaime

To Jaime's quiet world and beyond!

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!

Preparing for Surgery

After our tough decision discussed last post we have had some further developments. Following my meeting with our surgeon to sign off on Jaime's bilateral implants, another clinical meeting was held to confirm final details for Jaime's surgery. During this meeting a concern was raised as to the accuracy of Jaime's responses to her past hearing tests, due to this it was decided that we would return to the implant clinic for yet another test.

On hearing this news we were disappointed, we had been given a choice as Jaime had shown consistent responses at 80-85db (on her right), we have travelled to and fro to ensure this result did not fluctuate, but now Jaime was expected to suddenly improve on these results?... We couldn't understand how or why she would suddenly improve. 

I am still unsure why, however a mere 2 weeks after our latest hearing results Jaime did indeed improve... Jaime now consistently responded to sounds played at 70-75db, disqualifying her from bilateral implants. 

After having set our minds on bilateral implant just the week before, it took me a while to accept that the decision to withhold the second implant was indeed in the best interest for Jaime. Now with confirmed hearing at 70-75db Jaime should be able to access a good range of sound through the use of her hearing aid, she will be able to retain her natural hearing and delight in the richness of true sound (that is not able to be achieved with an implant), and the most comforting thought, that when she is not wearing her aids she may still be able to hear a loud alarm or just make out a shout.

We now have our surgery date set, Thursday this week we will make the drive into town for the biggest moment in Jaime's life so far! Quiet World Daddy is already nervous in anticipation, he is great at reminding me of everything that could go wrong! I on the other hand have not yet reached the nervous stage, I am still excited. Tomorrow I think the surgery will begin to seem more real...

Tomorrow we meet with the surgeon to get medical clearance for Jaime to ensure she is fit to undergo surgery... This has posed us a tough few weeks of keeping Jaime quarantined from coughs and colds- a challenge in the midst of winter!!

This morning Jaime began a mild cough that has me on edge, I hope that its a mild 24hr bug, I don't know how I would handle the prospect of postponing the surgery... 

Fingers crossed my next post will follow a successful day Thursday and not tomorrow with a postponement of Jaime's surgery.

Stay tuned...

One vs Two

Over the past week we have progressed through the final stages of our Cochlear Implant selection... 

Jaime underwent her final hearing test to confirm her level of hearing loss- it has been confirmed that Jaime's hearing loss is not fluctuating, she remains profoundly deaf on her left side (>95db) and has a severe level of hearing loss on her right (>85db). 

At the completion of testing I sat down with the audiologist to discuss what these results meant for Jaime... with her left ear practically incapable of receiving any usable sound an implant is automatically a yes, her right ear however remains borderline. Later that day the specialists at the implant clinic would have a meeting to determine if we would be preparing for single or bilateral implants. I was prepared for either answer...

We continued our week as normal, completing our first full term of swimming lessons, attending playgroup and taking the usual joy in watching Jaime's ever growing list of achievements... crawling, standing and scooting.

Then I received a phone call I had not expected... we were due to meet with our surgeon in a few days time and I had expected that he would reveal to me the clinical decision on Jaime's implants... it was now that I felt a slight panic... the decision had been made, Jaime was recommended for One implant, however, if we felt strongly about bilateral implantation this option was still open to us. 

After hearing this news I suddenly felt a great pressure, although it seems simple enough to follow the teams decision to proceed with one implant, we had been given the rare opportunity to choose two. There are many families out there that have had to fight for a second implant for their child, many more that have been unsuccessful despite feeling that this would be the best outcome for their child.

That night my husband and I had a long discussion about what we felt would be best for Jaime, it is not easy making a decision that will impact on the rest of your child's life. If we chose the second implant, there was no turning back, any remaining natural hearing would be destroyed and she would solely rely on the implant. If we chose not to implant and she did not progress as well as hoped with her natural hearing then we had lost a window of opportunity, did we wait for the possibility of medical advances or new technology, or proceed with the tried and tested technology available to us.

With our experience in deafness restricted to our own daughter I began making phone calls, in our minds we had made our decision, however I wanted to hear some affirmation that we were making the right choice... although unable to give any formal advice, I felt comforted in our decision after speaking with the staff at Taralye. 

Ultimately my husband and I know our daughter best, we are with her every day, day in and day out, we see her progress and when there is a lack of it, and in the last two months we have seen Jaime's verbal progress cease, we felt that the benefits Jaime would get from Cochlear implant outweighed the benefits of preserving her remaining hearing and waiting for technological or medical advances.

A few days later and the surgical consent forms are signed- Jaime will undergo surgery to receive bilateral Cochlear implants. 

Finally our journey towards giving Jaime the gift of hearing feels real... before August arrives Jaime will have completed her first big step to a much louder world!

Our RCH Adventure

Thursday night and this Quiet World Mama is curled up in bed ready for sleep and looking forward to the end of the week.

This has been another busy week for Jaime. First off the rank was a trip up to the Austin Genetics Clinic where we finally received our answer as to the cause of Jaime's deafness. Jaime has a genetic condition which causes Sensorineural Deafness as a result of a deletion within a gene called the Connexin gene- This is the most common of the genetic causes of Deafness, and for Jaime thankfully does not cause any other abnormalities. 

The Connexin gene is a recessive gene meaning both myself and my husband are carriers and will have a 1 in 4 chance of having a future child with a hearing impairment. I feel that this answer has finally lifted a weight off my shoulders, I feel like we can move forward with more clarity and confidence rather than wondering why.

Second of our big appointments this week was our long awaited adventure at the Royal Children's Hospital. After six months on the waiting list, finally the day had arrived for Jaime's MRI (Magnetic Resonance Imaging) and CT (Computer Tomography) scans. 

The day we had been impatiently awaiting had now become a day of anxious anticipation. Our first challenge was to survive a morning of fasting a little girl who loves her food! At midnight our sleepy little bub was woken for her final feed, 7am we were up and ready for our first round of cuddles and distractions (Jaime was not pleased about missing her breakfast) By 7:30 thoughts of breakfast were replaced with playtime and Thomas the Tank, and by 8:30 we were bundled into the car and on our way to the RCH (Jaime kindly treated this mamma to a peaceful drive dozing for the hour plus journey). Soon we were checked in to the MRI unit at the RCH awaiting our turn.

 

As per usual Jaime instantly began making friends with the nursing staff, captivating them with her bright smile. The nurses kept us distracted with bubbles until finally the time came to say goodbye to Jaime and leave her in the hands of the lovely RCH staff. As my beautiful girl drifted off to sleep I kissed her 'goodnight'. Watching those starry eyes close under the anaesthetists mask Jaime looked so tiny and fragile. Although a simple scan, to see your child looking so vulnerable and then having to walk away is heart-wrenching. I headed off to begin my anxious wait, eager to see my baby girl safe in recovery.

90 nervous minutes later, I was reunited with my precious bundle in recovery where Jaime was already awake and entertaining the nursing staff! She never ceases to amaze me, she truly is a little trooper taking everything on with a constant smile.

Once discharged, as I'm sure most of you would be aware, no trip to the RCH in Melbourne is complete without a visit to the cheeky Meerkats...

 

 

...and the giant Groper at the Aquarium!

(He was almost as big as Jaime!)

With our RCH adventure complete this Quiet world Mum is glad to be home, Jaime happily tucked up in bed and the weekend soon on its way!