Wainui City Life Church Youth Group Concert

We had a wonderful night out on Saturday night at a concert organised by the Youth Group of the Wainui City Life Church. This wonderful group of young people completely planned, organised, ran, and performed in a concert to raise funds for James' implants.

It was a great night, with all the Hutt Youth groups taking part and performing songs, dances or musical peices. It absolutely ROCKED!!!

Cameron had the time of his life dancing away, and we literally had to drag him out well past his bed time to head home. It was so wonderful to see such a motivated and caring group of people going out of their way to help someone else. The world needs more people like you!

So thanks heaps to the Wainui Youth Group, and all their helpers and family and friends, for a wonderful night.

Yay for James and Yay for the Lions Club!

Some more great news...

First of all, James and i went back down to Christchurch last Wednesday to see the lovely people at Van Asch, and all went so wonderfully well that Joanne didn't see any need to set more goals for James, as he is exactly where he should be for his age! He is even a little ahead in some things (brag brag brag!!!) and, God help us, is crawling! Cameron is totally unimpressed with this, as James now follows him everywhere, and wants to play with what ever Cameron is playing with. It's very cute to watch, but i know first hand just how annoying little brothers are, so can sympathise. (Sorry Alex, but it's true!)

Secondly, i met with two of the lovely gentlemen from the Tawa Lions Club this morning, and they had the most fantastic news - they applied for a grant from a Lions NZ Charitable Trust (and i can't remember the name - will try and find out) and they got it! The whole $6000. of it! This, along with all the amazing work the local Lions have been doing, means that they have fund raised almost ten thousand dollars so far, and are still going! They are a totally amazing group of people!

Which brings me to the last note. The Lions are doing a fundraiser here in Porirua on the 10th of December. It is a movie night at the Reading Cinema, Porirua. Tickets are $20 each, with spot prizes, lucky tickets etc. All the money raised goes straight to James. And the movie? Well James Bond of course! The latest installment of the 007 movies 'Quantum of Solace', which should be a fantastic movie. I will e-mail everyone as well, but please tell everyone you know. It's a great excuse for a night out for those like us who are stay at home nana's, and as i said, all the money raised goes to James.

All going well

Hey there everyone. Just a wee note to say that all is going incredibly well in James' world. He is right where he should be developmentally according to our neuro-development lady, and he is up on hands and knees rocking, just gagging to be following Cameron around now.
Hearing wise - James is loving his implants (and loving the taste of them! they spend a lot of time in the drying kit at the moment, having been liberally smeared with baby spit) and is 'talking' like every other nearly 8 month old. We have noticed quite a difference between right and left, however, as we have had to leave one then the other off for a few days at a time. (James' favorite form of motion is to arch up on heels and the back of his head, and shimmy around the room. Unfortunatly this keeps rubbing raw the top of the implanted part. And he looks down right silly, but he doesn't seem to care.) He seems to hear very well with his left ear, and will turn to us or the tv, and hear the quieter sounds, including voices. His right ear, while i think he can still hear out of it, is no where near as good, and i think he misses all but the loud sounds with that one. Together I'm pretty sure he can hear well. It is an interesting point however, as i am almost certain that had we gone with only one implant, it was the right one that they were going to do. So had we not done both, James would have very little hearing at all. It is a great justification, had we needed one, that we did both ears. Because the look on his face as he waits for us to switch his ears on in the morning, then the huge beaming grin as he hears our voices... well, in the words of the mastercard add - PRICELESS!

Pumpkin Patch Fashion Show

Our latest fundraiser was fantastic, thanks to a great group of kids (and their parents who lent them to us, or helped out dressing them).

James Whale presents... Spring/ Summer '08 Pumpkin Patch Fashion Show!

Patch provided the clothes from their new season stock for us to run a fashion show to raise more money. St Peters Church let us use their hall for free, and friends gave up their saturday afternoon to model all the beautiful clothes, which looked stunning. All up, it was a great afternoon, though pretty manic, and the kids had a ball as well as fundraising.

Thanks to Jacinta, Chelsea, Abby, Ethan, Oliver, Jacinta, Jake, Josh, Molly, Isobel, Brooke, Jorja, Jack, Cameron, Amalia and of course James. (And to Melanie, Rachel and Merridy who dressed the kids in record time between sets, and to Devon working the rather tempermental sterio)

Loud Shirt Day

Here is a wonderful picture of James and the Naenae Bunning's crew who came to work in lovely shirts for Loud Shirt Day, supporting Deaf people throughout New Zealand. Thanks heaps to you lovely people who made goobers of yourselves (particularly you, Aunty Jenni - man that shirt is sexy!) for people in need.

Baracuda Baby

And a picture, because who can resist such a cheeky little man!

Hi there, me again

All is still ticking along well here. Another trip to Christchurch and out to Van Asch, and another great appointment, despite chaos and confusion with the flights (First Christchurch Airport was shut the morning we were flying down - so ended up waiting an hour and a bit in two different lines. Then Healthpac didn't book James and i on the flight home, so more panic, but Air New Zealand were lovely and put us on anyway.) Neil and Joanne were nice and pleased with our clever little boy, and his hearing age has caught up with his biological age, so he is doing extra well.
He can now sit up on his own (and only falls over every now and then, or if he gets very excited; all co-ordination goes out the window then) and his motor skills are improving, or so we think. He has two wickedly sharp teeth, that he uses to great glee on everyone's fingers, so you have been warned!

I also have a few more thanks...
Firstly to the Wellington Special Education Team, for some great fundraising that is still continuing.
Secondly, the BNZ Bank team for their mufti day fundraiser
Thirdly, Ruthie and the NZ Post crew, who organised a lovely Theatre evening in town, which was great despite mum's car getting clamped.
And Last but not least, to Angela Povey, a friend of the Whale Family, for her incredibly generous donation.
Thanks so much to you all.

The next fundraiser, for those interested, is at the end of this month. On Saturday the 27th September, we are having a Pumpkin Patch Fashion show, with local kids modeling the new Spring/ Summer '08 season clothing. There will be a chance to win a $50 Patch voucher, raffles, spot prizes for kiddies who come dressed up for the spring/summer theme, and a yummy afternoon tea. If you're interested, contact your local James Representative. Tickets are $7 per person, or $10 per family. It will be out here in Tawa, from 3 - 4pm.

Another Update and some more thanks

WE'RE HALF WAY THERE!!! we have made $15,000.00, which is half of the cost of the implant itself! And a week shy of James' 6 month birthday too! And it's entirely thanks to all you wonderful people who have supported us over the last six months.

So some more of you to thank...
- The Linden Women's Institute (Nana Betty's lovely ladies group)
- Siobhan, Ross and Samantha Gerritson
- Jessica and Hamish Denston
- Monica (Auntie Jenni's sister in law, i think, or perhaps Jenni's brothers friends dog walkers cousin's next door neighbours daughter... just kidding Mon)

No trip to Christchurch this week after all, as Joanne, our Habilitationist, is really sick (Hope you are okay soon Joanne) so hoping to head down sometime closer to the end of the month. James is still soaring away, having a ball. I took him to Mainly Music with Cameron, and he spent the whole time bopping away on his bum and shrieking at the top of his lungs to the songs. I put him across my knees to help Cameron to some of the actions, and he fell asleep in 20 seconds, noise and all, so worn out by the fun.
The weather here has put on the most wonderful show, with sun and flowers the weekend before spring starts, so everyone is happy and glad to be outside again. Cameron spends his days exhausting himself in the garden, and the dog is finally getting the walks she needs. James is discovering the joys of warm sun on a bare bottom, and is happy as a sandboy, (as we all would be if we could lie around bare-arsed all day!)
Here's to spring! Long may the sun continue!

Hello Everyone!!!

Big cheesy grins to all! As you can see, James is thriving, and you wouldn't believe the volume coming out of the child! He is well and truly making up for not hearing for the last few months, and is making sure we can all hear too.

A few people have requested account numbers for donations, so i hope it's all good to put it here.

National Bank (NZ) 06 0549 0330779 00

Please put your name in the particulars, so we are able to thank you wonderful people personally.

2 weeks post switch on, and a Note!

Our first post-switch on appointments down at Van Asch went fantastically on Monday and Tuesday. Neil and Joanne were thrilled with how James is progressing. (As are we to be honest, but we are biased.) It seems at the moment like he is hearing more general sounds with his right ear, but is hearing the higher tones with his left ear, so between the two, is doing really well. This may be a development thing, or a direct result of the damage done to the cochlear - just got to wait and see.

This leads me on to a topic i have been thinking of a lot lately, thanks to some rather ignorant people who seem to enjoy spouting off their opinions on topics they have no understanding of. Firstly, not all deafness is the same. Deafness can be for many reasons - being born deaf, damage while in the womb, damage later in life, structural problems within the ear, viral problems... to name a few. It is not possible to put all kinds of deafness under the same umbrella, and treat them all the same. James' deafness is because of Pneumococcal Meningitis, and so could hear in the womb, and for the first few days of life. Unfortunately for meningitis victims, the damage done to the cochlear actually gets worse over time. Generally within the first year or so after the virus, the cochlear is completely turned to bone, and so is totally useless, and impossible to put an implant in.
Secondly, it is not greed on our behalf to be wanting two implants for James. The prognosis of a meningitis child with cochlear implants is not guaranteed, nor is it guaranteed that they will be able to get the implant in when they try due to the damage done. Therefore by restricting a meningitis victim to one implant, you are halving the chance of them hearing well. And due to the deterioration, we couldn't say in a year 'okay, this one didn't work, lets try the other'. By then it would be too late. James would be left totally deaf for life.
Thirdly, the rest of the world has already come to this conclusion. Melbourne, Sydney and Adelaide all fund bi-lateral (two) implants for meningitis people. They consider NZ to be a third world country when it comes to much in the way of health care, and in this case particularly. Our government is being partitioned by the Ear Nose and Throat Surgeons throughout the country for this to be reviewed. We are just too early.
Lastly, as a parent, would you not do the best possible for your child? Would you truly turn to your child and say 'well, the government obviously have a reason, so sorry son, we'll leave you to struggle all your life'. We all want the best life we can give our kids, and if we are able to fix something, why on earth wouldn't we. Please put yourself in ours, or perhaps even James' shoes before opening your mouths.

Some wonderful news

We have had two lots of really great news this week. First up, Mary-Anne, our Neuro-Development lady came around on Wednesday, and after playing all her lovely games with the boys, said that James has now passed the 50% line for his age in developmental milestones, and has caught up with where he should be in almost everything. We knew he would eventually, but he did it earlier than we hoped, so yay for James!!!

Also Lynella came to check on the progress of James' hearing, and is also thrilled with how quickly he's responding to sounds and things. He's a bright little boy, and his hearing age is catching up with his biological age very fast, the little smartie!

Man we're going to have our hands full with these two far-too-clued-on little boys.

Welcome To Holland

We were sent a wonderful pack from the Federation for Deaf Children this week, which was full of wonderful things including a soft toy elephant with hearing aids, and some books about him, which Cameron loves. It had a whole load of resources about how to parent children with hearing problems, and music cd's etc. It also had a piece of writing called "Welcome to Holland" by E.P.Kingsley. Though it made me cry, it was such a wonderful way of explaining things, that i had to put it on here. (I hope I'm not breaking any copyrite laws or anything). It is hard to put into words what it feels like at the moment, and though i feel incredibly ungrateful, I'm so angry at times i could scream. It just doesn't seem fair, mostly for James i guess. He never signed up for this... Sorry. I'll just write the story...

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
"It's like this...
"When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
"After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says 'Welcome to Holland'. 'Holland?!?' you say, 'What do you mean Holland? I signed up for Italy, I'm supposed to be in Italy. All my life I've dreamed of going to Italy.'
"But there's been a change in the flight plan. They've landed in Holland and there you must stay. The imporant things is that they haven't taken you to a horrible, disgusting, flithy place full of pestilence, famine and disease. It's just a different place.
"So you must go out and buy new guide books, and you must learn a whole new language, and you will meet a whole new group of people you would never have met.
"It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there a while and you catch your breath you look around... and you begin to notice that Holland has windmills, and Holland has tulips, and Holland even has Rembrandts.
"But everyone you know is busy coming and going to Italy... and they're bragging about what a wonderful time they had there. And for the rest of your life you will say 'Yes, that's where i was supposed to go. That's what i planned.'
"And the pain of that will never ever, ever, ever go away, because the loss of that dream is a very, very significant loss.
"But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland."

More fundraising...

First up, a HUGE thank-you to the Tawa Lions who came around last week and gave us an incredible cheque for $2000.00 as well as an offer of more help over the next year. It was totally amazing, and we are blown away by their generosity.

We drew our raffle on Friday, and i have now got in contact with everyone so...
1st Place (The $500 Bartercard Voucher) went to Nicky and Paul Streeter
2nd Place (New World Hamper) went to Susan at IPENZ House (Grandad's work)
3rd Place (Game) went to Joanne Lake, our wonderful Habilitationist at Van Asch.

For the kiddy's raffle...
Boys hamper of toys went to Theo Deetler
Girls hamper of toys went to the Watts kids

Thank you so much to everyone who bought a raffle ticket. We made almost a thousand dollars out of the two raffles, which was amazing.

James the Bionic Baby goes Live!

Finally, after all the appointments, operations, worries and illness, James can hear again!!!

We flew down to Christchirch on Sunday night, and out to the Van Asch Deaf Education Centre. We were staying in one of the flats that they provide for out of town families who are there for appointments, and Cameron was in seventh heaven playing with all the toys that were waiting for him. Poor James has yet another cough, so the night was a little disturbed, but we were up and eager early the next morning. After a wonder around the school, Cameron on his scooter, we stopped at the Library to read until 9am.

The appointment was about an hour long, and involved lots of fiddling around with James' new implants, and setting things on the computer, (There is a wee processor in the ear piece that does all the work.) It also involved lots of funny noises and shaking toys and things on Joanne's belalf, which James found pretty funny.

Then, finally, Neil and Joanne got everything on and operational and set at a level that didn't freak him out, but enough that he could hear sounds again. He was a little bewildered by it all, and i don't think he was quite sure what to make of all the fuss, but there were some distinct responses to sounds, so all is great.

He started to get a little unhappy towards the end of the appointment, but i think it was all the poking and prodding more than the sound that was bothering him. Cameron even got to see us all on TV! (There was a room next door with a one way mirror and a tv with the live feed from the room, so Cameron got to sit with Lynella and munch on his snacks while watching us. He thought it was great!!)

Back to 'Our Other House' to put a very tired little baby to bed, as he was totally exhausted by it all. To be honest, i think John and I were as well!

We went for a bus ride into Sumner that afternoon, again sending Cameron into fits as everything with wheels is the coolest thing ever. James seemed quite happy with his new hearing, not responding a huge ammount but talking to himself ten to the dozen. It seems wee James loves the sound of his own voice! I wonder who he gets that from?

The next morning we were back for another appointment, to re-set the implants again now he had gotten used to the sound over night. More prodding, and James was a little less tollerant of it second time round, but everything was set again, and everyone was very pleased with the whole thing.

We were told to be aware that James now hears, but he hears like a new born. We have to realise that he won't suddenly laugh at us, or turn to our voices, as he has to learn how to hear. Just like a new baby needs to learn what each sound is, and what they mean, so he has to now. But luckily, he only has a gap of 5 months between real age and hearing age, as opposed to the poor wee kids not picked up until 1, 2 or even 3 years old. He is a very lucky little man, thanks to Lynella's pushing the issue until something was done.

So, back to Wellington again (another flight for Cameron to rave about) then straight to the docters for James again, as he was very feverish and unhappy. Nothing to do with the implants though - just bad timing as James has yet another viral thing. We just can't seem to get better from the first, then another hits. Roll on summer!

Almost there

We had a visit yesterday from Lynella who brought with her Joanna from the Van Asch Deaf Education Centre (where we are going for all the Implant related appointments from here on).
I got to have a play with a dummy implant, and see how it all worked. I even got to put it on James, and see how the magnet works. I also decided to try and keep that bit away from Cameron, as i can just see him sticking his magnetic fridge letters to his brothers head, and thinking it's the coolest thing ever.
It was a little hard seeing how big the things are, and just how much they are going to dominate James' wee head, especially with two, but i guess it's not a biggie, all things considered. It will just be keeping it on his head that will be the trouble - apparenly once they learn to pull it off, it's a great game to get mum running. Little monsters!!!

Thanks Joanna for the information. Look forward to seeing you on Monday.

Count down now to switch on!

A few more thank-yous to some amazing people

No end of thanks to the Southern Cochlear Implant Trust, who paid for James' second implant and are allowing us to pay it back over a year. Life would have been a lot harder without you.
To the fine folk at Lush Porirua - for donating a basket and for treating Cameron like an equally special little man.
To Christine and Valrae and all the other helpers at the Tawa/Linden Anglican Church Pop-In.
To the DLT and DSS Teams at NZ Post
To Cathy, Peter F, Darcy and Graham (A really lovely thought Graham) from NZ Post.
To the hungry people demolishing all my slices at Metalworx, Bunnings and NZ Post Wellington.
To Margaret Mc, Lyn H (Granny Dot's friend)
To Tawa and Porirua Rotary - Going so far out of your way to help us.

Just thanks to everyone who donated money, time or just thoughts.

Through Cameron's Eyes

"I'm Cameron and I have a little brother called James. I cuddled him when he came home from the hospital, then he got sick and went back with Mummy and Daddy. An ambliance came and took him. I wanted to go in the ambliance.

At the hospital the docters gave James medicine and it made him all better. I gave him milk in a bottle at the hospital. There were lots of babies. James is our baby.

Being sick broke James' ears. He can't hear me when I shout. He likes to smile at me. He laughs at me lots.

We went to Old McDonald's House and James had an operation to fix his ears. I played at Old McDonalds House. I went on the bike and played basketball with Daddy and I went on the playground right to the top, and went down the slide, and I played soccer on the table with Chase and ate all my dinner. James had cuts on his head and a bandage. He looked funny. He smiled at me.

I want to go to Old McDonald's House tomorrow."

Cameron is just two, and has had to deal with a heck of a disruption to his life. We expected some disruption, and had the best of plans as to how we were going to integrate the new baby into all of our lives. But 'the best laid plans' and all that... Not only did Cameron loose his new little brother just after he got him, but he lost his mum and dad for a few weeks too. Though we did our best, it just wasn't enough for the poor wee man, and it's the most heartbreaking thing to have to choose between your children.

However, Cameron has generally been a star. He is so helpful fetching things for James, and he adores his little brother. (Not nearly as much as his little brother adores him!) Even with trips too and from Christchurch now, Cameron is great. He loves the plane rides, and is so well behaved that you wouldn't believe he was only two. He also loves turbulance, and the last trip back into Windy Wellington had the rest of the passangers clutching their arm rests, going green while Cameron shrieked with laughter, shouting "Bumpity bump!"

Unfortunatly though, Cameron is still feeling a little left out a lot of the time. When we are out trying to organise fundraising, everyone goos over James, and Cameron is often left holding onto the buggy with no-one even noticing him. We have tried to draw attention to him, and it is his job to introduce his brother to people, but though his speech is incredible, and he is a tall boy for his age, he is often not seen or heard.

So a wee note if we see any of you out and about - please notice my wonderful, caring, beautiful big boy. He is the best big brother a little boy could ask for, and needs to be recognised as such.

A slight setback

With all the positives, i guess there is going to be a few negatives. Southern Cross Healthcare have come back to say that they won't pay for any of the implant. Really not certain now exactly why we have health insurance when they won't help when something happens.

Sorry. Just a little gutted.

On the brighter side, all is well with James, and his scars have healed up almost entirely. He doesn't need bandages on anymore as he is leaving them alone, and no more socks taped onto his hands. Just got to wait for his hair to grow back where they shaved it, as he looks like an anti-monk with hair on top, and none around the edges.

James an appointment with his neuro-development person, Mary-Anne yesterday. Muscle tone is still a little low, and he's just a bit behind so far, but she has given us some exercises to do to try and remedy that. Not into the worrying level yet, thank heavens, but watching him carefully. Apparently there is a relatively high chance of some long term damage from the seizures he had when the meningitus was at it's worst, so good to know that we have such a lovely team taking care of James.

And so to the nitty gritty of fundraising.

So far we have...

Had two sausage sizzles outside Toy World Porirua, which raised almost $800.

Been baking like a bat out of hell (if bats could bake i guess) and selling slices, fudge etc in direct accordance with NZ's obesity epidemic.

Porirua Rotary and Alicia and Dave at Toy World have been running a donation and prize draw over the school holidays, which managed to raise over $2000. HUGE thanks to all of you! Rotary are also still running raffles with the goods that Alicia and Dave are still getting in through their reps.

For anyone with kids - shop at Toy World (I am an advert on legs!) they are the most wonderful people, as well as being a great shop.

And then there have been the incredible people who have made donations into James' bank account. I really hope i get you all, and please tell me if i have missed anyone.

Aged Aunt Seona and her fellow coffee addict friends Una and Madhuri

Treasures mums Maegan, Andrea and Cyndi

The Webster Family

Tony and Jill Gerritson

Gayani and Family

All the amazing people who made donations at Toy World

Thanks also to...

North City Pharmacy

Porirua New World

The staff at Bunnings Naenae

Bartercard

Who have donated things that we can raffle to raise more money.

So, so far we now have $7500, plus the money to come from the Toy World/ Rotary fundraising. Thanks to you all. Big goober grins coming your way.

James the Bionic Baby

9th July, 2008 - James got both implants during a 6 hour surgery at Christchurch Hospital, thanks to Phil and Darran Murray, the ENT surgeons. It was a little harder than hoped, and there was a bit of drilling to do through bone that shouldn't have been there. They had to remove one of the small bones in James' right ear as there just wasn't enough room to move around in his wee head, but as his ears are now just there to hold up his sunglasses, all is well.

And no, we hadn't forgotten about the $30K. We just kind of ignored it, and hoped for the best. Which happened in the form of the Cochlear Trust and David Kent, who have paid for the implant and are letting us pay them back over the next year. You guys are legends, and have made a stressfull time a lot less so.

Suddenly all is moving fast.

While organising our first big fundraiser thanks to the amazing folk at ToyWorld Porirua, we got the call that James and i would be going down to Christchurch to meet the people at the Van Asch Deaf Education Centre. This is the place that does all the testing and follow ups for people who have got Cochlear implants (among other things) and where we would be staying each trip to Christchurch. We also got to meet Phil Bird, the ENT surgeon who would be doing the surgery.

James was a star on the flights, even flirting with the air hostesses, and didn't stop grinning the whole time we were down there.

The tests all proved however, that James' hearing was almost entirely gone, and he couldn't hear our voices anymore. Phil decided that James would need the surgery asap.

We flew back to Wellington on the Thursday morning, and i got 3 calls all at once from everyone involved in Christchurch saying we needed to come back on Monday, James was booked for surgery on Wednesday. We promptly crapped ourselves, but turned up as ordered in Christchurch hospital on Monday morning.

We got to stay in Ronald McDonald House, which is the most amazing place ever, and had a huge playground to stuff Cameron in when ever we felt the urge to slaughter him (which was often. He was really making the most of being away from home to push all buttons)

Our first lot of THANKS!!!

Firstly, huge thanks to Lynella and the Wellington Hospital Audiology team for your determination to get things going for James as soon as humanly possible. If it weren't for you, we would still be lost and worried why our baby wasn't doing what he should.

Also all the nurses and docters in Wellington Neonates. There aren't the words around to say thanks enough for everything you have done.

And last but not least, to the most amazing extended family that anyone could ask for. Granny Dot, Nana Betty, Grandma and Grandad, Uncle Alex and Aunty Jenni, The Story Family (Yep, you're family too), Uncle Steven, Grandad and Gran Jean... the list goes on. Without you we would have fallen appart at the seams.

The journey to new ears begins

At five weeks old James became one of the youngest children out there to recieve hearing aids. Lynella, our Advisor on Deaf Children, was determined to keep James' time without sound to a minimum, and he took to them immidiatly.

He loved music, and was in seventh heaven every time he heard his brothers voice. He started to shout at us, and began to learn how to use his own voice.

However, it wasn't to last. One of the major problems of meningitus caused hearing loss is that it gets worse and worse. The cochlear (the part of the ear that turns sound into brain waves) fills with soft tissue, which then turns to bone. This essentially stops it from doing it's job, causing profound deafness. James' hearing deteriorated very rapidly, and at four months was almost entirely deaf.

This did put James on the list for a cochlear implant though. The implant essentially replaced the cochlear, and sound goes directly through the hearing aid-like exterior part, through the implant which turns the sound to electrical impulses and into the brain. We were thrilled that there was a way that James should be able to hear.

Then we were knocked back again when Lynella told us that the NZ government will subsidise only one Implant, essentially giving James hearing in only one ear. According to the specialists, for him to get on as normally as possible in life, hearing in two ears is essential. Our brains are made to process hearing from both sides, and without it life becomes a lot harder.

And this is why we have started this blog, and why we hope you are all reading along.

We are now fundraising the $30,000. needed to get James the second implant, and to get him the best possible hearing that we can. We will also need to fundraise the first upgrade (these upgrades will happen every 5 - 7 years) which will be $10,000 per upgrade. It's rather a daunting prospect - finding $40,000, $30,000 of which needs to be in the next year. However, we are keeping positive, and have already had a lot of people give their support. We are going to keep up the progress here so that all you amazing people who have helped or sent best wishes can keep track as well.

The Story So Far

Well, here is a quick run down of James' first four months of life, and why we have set up this Blog Site.

7th March 2008 - James Alexander Whale was born at 12.16am weighing 7lbs3oz and perfect in every way. Went home from Wellington Hospital that afternoon to meet the rest of the family.

8th March 2008 - James started to become unsettled at 2am when he refused his feed. He wasn't unhappy, didn't have a fever, and wasn't crying. He just wasn't settling. At around 5am he started to make a strange, rhythmic grunting sound, but still wasn't unhappy. At half past six he began to cough up a little blood, and we called the midwife and hospital. The hospital told us to go to the local A and M and wait until it opened at 8am. Our midwife (thank heavens) told us to call an ambulance and take him straight back to the hospital, which we did. We waited for half an hour in the postnatal ward for a docter so see James, and when she did, she bolted, dashing back a moment later and hauling us down to the Neonatal Intensive Care Unit. In the elevator on the way down, James started to have almost constant seizures, and stopped breathing.

Suffice to say the next 24 hours were beyond description. James' chances of surviving were very poor, and he was grey and heaving with each ventilated breath. He had lines in every limb, into nose and throat, even into his little belly button. The amazing docters and nurses in the NICU fought very hard to keep James alive, and in the end, between them and James' stuborn nature, they won.

It turns out James had contracted Strep Pnumococcus, which had turned to blood poisoning and meningitus. This killer disease has an awfully high mortality rate in children and the elderly, and James, at not even two days old, beat the odds.

22nd March 2008 - After two weeks in Neonates, and IV antibiotics, various drugs and a lot of prayers, James went home a second time, this time to stay.

26th March 2008 - We discovered that the meningitus had left James deaf in both ears, a deafness which was to get worse over the next few months.