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.