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

We have a dream...

On Friday I met with one of the lovely staff from Taralye (one of the early intervention services available to deaf kids in Victoria). With their help, one of the tasks for the day was to set a goal for Jaime that we may aim to achieve.
At this point in time, the goal set was simply to in time, allow Jaime to attend a mainstream school and integrate well with her peers.

This task has got me thinking... What are our goals and aspirations for Jaime? What are our expectations? What challenges do we expect to face? ...and how will these change as time progresses.

I write this blog not only to share our story, our adventure through Jaime's quiet world, but to also create a record so that I may look back and reflect on my own outlook. Perhaps I will look back and laugh, perhaps I will shed some tears, or perhaps I will shake my head at how naive or anxious I have been.

At such a young age it is difficult to look much past tomorrow, yet so important to consider Jaime's future. Surely any parent can relate, we all hope our children will grow up happy and healthy, we hope our children will be intelligent and have friends... everyone wants that...

...I hope that Jaime may be able to hear her mothers voice, I hope that she may one day be able to laugh at her fathers jokes and I hope to hear the words "mummy" and "daddy", these dreams sound simple, but for Jaime these milestones will not come without their challenges.
Longer term, and a much broader goal, I hope that Jaime may achieve whatever she dreams without roadblocks in her way. Everyone's child will face hurdles, we just happen to already know some or hers.
I do not find this goal setting easy, I am constantly worrying if what I hope for Jaime is realistic and achievable. I am excited about beginning our journey with Taralye, I look forward to the support and guidance. What's more, the motto of Taralye "getting deaf kids talking" is exactly what we are hoping for.

When talking about hopes and aspirations, I may be moving forward and looking to the future however my husband is still stunned that Jaime is deaf! How can she be deaf? Everything about his daughter is perfect, how can her ears just be there as decoration?! My husband is thankful for the modern technology that may allow his beautiful daughter to hear, he is glad that we have the opportunity to communicate verbally with our daughter, he was struggling to come to terms with the prospect of having to learn something new, to have to sign; that may sound selfish, however you can't help your feelings (and I am not here to 'pretty up' our story).
Everyone goes through a form grieving, some may come to terms with their child's deafness in a matter of hours or days, others, who knows... This is why we all need to seek support and guidance, no-one needs to travel this journey alone.

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.

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