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Tuesday 26 February 2013

Jaime's Quiet Times

Jaime has not always had hearing aids and cannot always wear them...
Life before having her hearing aids fitted, even tho young at 7 weeks, was in many ways the same as any other... As a new parent I was learning how to care for a precious baby girl, giving her plenty of cuddles and treasuring the close bond we were developing.
Our lives in some ways were also very different. The first difference we noticed was car rides, where most baby's will be rocked peacefully to sleep, Jaime's response was very different... Screaming... Every car trip would begin with me holding my breath, if I managed to put Jaime into the car fast asleep we might make a 15minute journey before the screaming began, any longer in the car... Forget it!
With medical appointments often an hour or more away from home this was becoming a nightmare! The only solution was to take a companion to sit in the back seat, as it turned out, Jaime would wake and panic when she could not see anyone nearby, and any attempt to reassure that you were just behind her was in vain. Unfortunately, however, I could not always muster up a driving companion and spent many car trips myself too crying as I drove, unable to console my precious baby, and desperate to get to our destination so I could wrap her in cuddles!

This story was similarly repeated with nap and bedtimes although getting Jaime to sleep was much like any other baby, if she woke she would again seem to panic and required much more visual and physical comfort to drift back off to sleep.

Having said this, Jaime's quiet times are not always a negative... Ever found yourself tip-toeing around a sleeping baby? Not us! With no hearing to cause her to startle we were not worried about waking her, I am sure many parents wish they could turn their baby's hearing off for nap times!

Now days Jaime wears her hearing aids most of the time, however, being an electrical device they can't go everywhere with her... Baths and showers are quiet times and have prompted me to begin learning 'key word' signing, and baby sign. Before every bath or shower we sign to Jaime "bath", she is slowly beginning to recognise sign and often smiles in response! (She loves the water) we also utilise the sign for "finished" to signal the end of an activity.

Sign is going to be something important for me to learn as we are discovering Jaime's new favourite activity... Swimming! We relish our weekly visit to the pool, as soon as we plunge into the water Jaime is completely at ease. We enjoy socialising with our swimming pals Mia and Zac too! At the moment we get by in the pool pretty easily, we just make sure we use visual cues to signal duck dives. I am nervous about when she progresses to toddler classes... How will she respond to the teacher... How will she know what to do?
I guess we will let time work that one out... At the moment we are enjoying ourselves too much to worry.








Finally we come to bedtimes, for the most part these are much the same as for hearing babies, we have a bedtime routine that includes story time. Story time is important for any child, I make sure we never miss our bedtime story as I feel it is key for developing Jaime's spoken language, not to mention I LOVE my cuddles! We also include one very important activity, we do the rounds and say goodnight to Jaime's brothers who, even as older teenagers, love to see Jaime's smiles as they sign 'goodnight', then finally goodnight cuddles with Daddy who was most resistant to signing but is making baby Jaime and Mummy very proud with his consistent attempts to sign (he's become very good at the goodnight sign). Secretly I am teaching Jaime the sign for 'silly daddy' as I am sure it will come in handy lots over the upcoming months and years...

Jaime is a very bright eyed girl and never wants to sit still, where she may lack in hearing she makes up for with her inquisitiveness and desire to always be moving so she may see the world around her.


Monday 25 February 2013

Why is hearing so important?

Whilst following my blog you may ask 'why is hearing so important?'
I guess in some ways perhaps it's not.
Many people communicate through sign language and get by just fine, however, in our predominantly hearing world, to find others who communicate through sign can be a challenge. AUSLAN (Australian sign language) is certainly an option and I have always wanted to learn but have been too lazy to go out and join a course. This may now be my motivation to get out there and learn, however I must also be honest, for us in our family the prospect of having to communicate via sign only is a daunting task and not our first choice, we are a hearing family, we speak and laugh together and this has always brought us closer.

So for us we have made the choice to develop Jaime's verbal and auditory communication skills as best we can. This is where the ability to hear plays such a major role.
You may then argue... (especially in the case of the cochlea implant) Why not let the child choose when they are old enough? Perhaps you could, however when making your choice consider this...

...Before the age of one, although we may see baby babble as reasonably insignificant, it is in fact the beginning of speech.
Our babies are born ready to learn and in a hearing child the instinct to listen to, and mimic the sounds around them is strong and starts from day one.
By approximately 6 months of age babies are already able to recognise all of the key sounds that make up their native language and are constantly listening to the feedback of their own verbalisations. Not long after this, first words begin to emerge.

Think now, about a child who lives in silence. How will they learn these sounds and how to speak? If all of this learning happens before their first birthday, what happens when you miss out? This ability to learn speech and language dramatically decreases as a child grows. So is it fair to wait until a child is old enough to choose? What if they choose to speak? Imagine how far behind they would be!

Jaime does not live in total silence, hers is a quiet world, although profoundly deaf in her left ear, she retains some low level hearing in her right ear, 'great' you may think, she will be listening and speaking in no time, but no, unfortunately Jaime lacks the ability to hear 'verbal sounds'.
This is where her 'purple pair' (and in time possibly a Cochlea implant) come in, Jaime's hearing aids aim to enhance her hearing to such a a level that she may be able to pick up verbal sounds, she may not be able to hear the wind whistling through the trees, or the birds chirping at her window, however with the ability to hear our voices she will be on her way to developing speech.

As of yet we have been unable to determine how much Jaime is hearing whilst wearing her aids, we are awaiting a 'hear lab' at Australian Hearing in march to determine if she is responding adequately to speech.
Children who are deaf (deafness includes hearing impairment/loss ranging from profound loss to mild impairment) will in most circumstances still require speech therapy to teach them to listen and to develop their speech to a 'normal' level. Many of you have probably heard a 'deaf accent', the aim of speech therapy is to develop speech to the extent that these speech anomalies are either not noticeable or absent entirely. This is where the fabulous work of early intervention centres such as 'Taralye' come in, although we have not yet embarked on our journey with Taralye, we are eager to begin!

With assistance and practice the ultimate aim for us is that Jaime may attend a mainstream school with minimal additional assistance required, and that she can laugh and play with her friends in the playground without any hassle.
The hearing world for Jaime will never be perfect, although it will be a little easier.

...stay tuned for Jaime's quiet times...




Saturday 23 February 2013

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





Friday 22 February 2013

The Hearing Bonnet

With Jaime becoming increasingly active, I found myself constantly watching out for her hearing aids. Any parent of a child who wears hearing aids or cochlea implants knows how quickly they can disappear.
I tried tapes and headbands, however, neither solution lasted long. Or I found with such strong hearing aids the interference was becoming an irritation and distorting the sound processing.
Finally I was offered a solution from Early Intervention in Brighton, a simple baby bonnet. This was the answer, it seemed to work flawlessly, however I soon found some flaws; the stark white appearance was certainly not subtle, and although 100% natural cotton, hot weather soon posed another difficulty, also this bonnet still caused some "buzzing" and interference on her stronger aid (especially as we came closer to getting new ear moulds)

I began trawling the web for other alternatives however nothing seemed to be quite right for us.
This set me on the quest to make my own "hearing bonnet".
I am by no means a seamstress, owning a sewing machine is about as close as I come.
So I enlisted the help of a dear family friend and very quickly we made up our own "prototype" bonnet, I am not claiming to be original, nor a genius, I am simply happy that I finally had a fashionable alternative that has allowed me to mix and match patterns and materials to suit our hot summer climate as well as reducing the impedance to sound.
I still need a lot of practice in sewing, and I need to make some more alterations to the pattern for a better fit, however I hope that with some perseverance and practice I may be able make bonnets to go with the multitude of outfits hanging in my little girls wardrobe. I would also love to be able to make bonnets for other families who go thought the same daily hearing aid battle with their own babies or children.



Our First "prototype" bonnet, not quite the snug fit I was after, but a step in the right direction.



My second attempt at my "hearing bonnet", getting closer with the fit, now for some more patterns and colours!





I have also begun working on a "hearing headband" for older children who still require assistance to keep hearing aids in place however do not wish to wear a full bonnet. My prototype headband has been a relative success with Jaime so far, however currently at an age where she is discovering the joys of rolling the bonnet tends to be a better option.








BONDS Baby Search 2013

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Jaime H | BONDS Baby Search 2013

Quiet Beginnings

My story begins in February of 2012, after feeling under the weather at work I returned home via the chemist to pick up a pregnancy test, mothers intuition perhaps? I was pregnant!
Now expecting our first child my husband and I were elated!

The next 9months were filled with excited planning and dreams of the little being that was rapidly growing in my belly.
"Birth-day" arrived and we welcomed a beautiful healthy baby girl into the world. My little angel was absolutely perfect in every way!

At two days old the nurses arrived to check Jaime's health and hearing, my husband was out at the time and I was not bothered in the least as everything was going to be fine, or so I thought.
I still remember watching the nurse hunched over my tiny baby laying content in her cot, "she has been there a long while" I thought to myself, and then she looked up and told me, "Jaime is not responding as I would like, it might be fluid in her ears, I will come back tomorrow". I was shocked but confident that tomorrow all would be fine, tomorrow came and went and another failed hearing test, this time I cried. Was my perfect baby not so perfect? How could this be?
Guilt, bewilderment, heartache... What went wrong?
I felt silly, how could I think this way about my child, my beautiful baby, was there truly something 'wrong' with her?
It was another month before we had a diagnosis, a month of both coming to terms with the thought that my baby might be deaf, but also a month of denial, 'surely they will turn to me and say it was all a mistake!'

I have a medical background and I am still undecided if this has helped or not, I knew that deafness can be managed, technology exists that can help my baby hear and achieve, but how will I cope, how will I look after a baby with additional needs?

At four weeks of age Jaime was diagnosed with sensorineural hearing loss, she is profoundly deaf on her left and has a sever hearing loss on her right (this means she can only hear sounds 80db and above)
At seven weeks of age Jaime was fitted with her first pair of hearing aids. This was an exciting step forward- the thought that she may, for the first time, hear her mothers voice, I had never thought about how much this could mean. Jaime's 'purple pair' were fitted and we waited, Jaime paused, deep in thought, hearing... Something...? A clap.. A blink.. Success! We returned home with hope for Jaime's future.
As we progressed through multiple appointments and fortnightly fittings for new hearing aid moulds, it became clear that her 'purple pair' might not be enough, this sent us down the path of the cochlea implant.

Before you judge my feelings of disappointment at learning that my baby is deaf, please I urge you to read "welcome to holland" I was handed this story not long after being given Jaime's diagnosis, I felt like finally someone was reading my mind...

My child is still perfect, perhaps not what I had expected or planned, but she still lights up my world, this tiny being that I first lay eyes on and with whom I fell instantly in love.
This tiny being is still exactly the same, only my knowledge has changed.





Welcome

Welcome to Jaime's quiet world.

In this blog I will share our story of living with a deaf child from diagnosis to hearing aids and the journey to cochlea implantation as well as the day to day joys and challenges in between.

This is our story and follows the choices we have made as a family. I hope that this may provide support to those who too are entering the world of deafness, wether be it newly diagnosed or well on your journey, confident or bewildered.

Feel free to leave comments, ask questions and share your story too.


(Please do not judge our decision to implant, I know there are strong objectors out there, I am open to discussions and questions however this is not a debate and negative comments criticising or attacking those who choose to implant their child will be deleted, I support everyone's choice however if you choose to object please do it somewhere else)

My aim is to support and inspire other parents of deaf children so they may walk through their own quiet worlds with confidence.

Come join us on our journey through Jaime's Quiet World!