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!
Sunday, August 31, 2008
Sunday, August 24, 2008
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.
Tuesday, August 19, 2008
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.
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.
Saturday, August 16, 2008
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.
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."
"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."
Monday, August 11, 2008
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.
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.
Tuesday, August 5, 2008
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!
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