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

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!