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mum2paris View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mum2paris Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2005 at 9:32pm
My niece goes to a small country school in waikato, and they have most of their classrooms fitted with a speaker and microphone system.. and it's great, once she moved into a class that had that fitted she started doing so much better, and once she had grommets etc she has just moved ahead in leaps and bounds. i think all schools should consider this sort of thing. if they can get funding to put classes and classes of computers in , then a speaker system should be up there too... that can be just as important for a child's learning as any computer.
Janine and her 2 cool chicks, Paris & Ayja

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AlyAyde View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AlyAyde Quote  Post ReplyReply Direct Link To This Post Posted: 14 May 2005 at 7:35am
They told me the barium was flavoured so she may be okay. She is terrible to feed anyway so hope its no worse than usual. The pepti is going well. We have our number now so much cheaper. They put her on AR formla and that was horrible i dread to think of the damage it did, she would scream for ages even after i gave it to her. So been back on pepti for a couple of weeks now and have doubled her losec dose, and I thought things were going much better but we had a terrible day yesterday, but i guess they happen. I just wish she would get better. I was so looking forward to the whole breastfeeding thing. But the only good breastfeeds she gets is in the middle of the night. Oh well thats my moan for the day. We are off to buy about 200 trees this morning. Which with all the time i have on my hands (ha ha) will probably get planted over the next 2 years.


Jayde 25/12/04

Alyssa 08/04/03

http://Alyayde.bebo.com
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 14 May 2005 at 8:59am
Don't ever feel guilty Emma, your right you can't save the world but you can help your children. Orrs only fund 1 percent of disabled children in New zealand, which is not nearly enough. It's about time the govt started thinking about kids as they reacon they are the future. Micheal won a trip through the edge radio station a few years ago for children with disabilities. He went with 13 others and we felt really bad some of these kids were really bad but when we thought about it he's had more than his fair share of problems. He had chronic ezema since he was born he used to be raw from the neck down, and had to go to bed in wet body stockings he used to get up covered in blood, he's had and eye op, nose op, hernia op, he's been sedated and under general for tests 8 times he's boarder line von willerbrands and he's legally blind. But man he has the greatest personality. The way I figure it our children are entitled to the best.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 14 May 2005 at 9:06am
We have good support for Micheal. However a lady from the blind foundation told me that because Micheal can see, He can see the very top line on the chart, He falls into a grey area, as people are very aware of completely blind people, however the awareness for partial sight is quite low. People asume because he can get around there is nothing wrong with him. She reacons it's the same for people with hearing problems as well, there is less understanding if a child has hearing difficulties but can still hear.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 14 May 2005 at 9:07am
I really feel for you Angelnz waiting to find out what's wrong must be the worst thing. Good luck for Friday!
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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daikini View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote daikini Quote  Post ReplyReply Direct Link To This Post Posted: 14 May 2005 at 9:40am
Vicky, I have von Willebrands... as its a hereditory disease, have the rest of your family been tested for it? I'm sure you've found out lots about it, but if there's any way I can help, please let me know. (20 years of dealing with von Willebrands might actually come in useful!)
Becca, mum of 2 girls & 3 boys
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 14 May 2005 at 11:42am
Would you believe no one in my family will take it seriously so no they haven't been teasted. And unfortunately I have no idea where micheals natural father is. We split when I was pregnant and he dropped off the face of the earth.(not such a bad thing) I do remember his paternal grandfather had alot of problems with bleeding though. My other two are Ok so I am thinking it possibly comes from his side. We really only know the basics about it as he was tested two years ago. He's not classed as severe so that's got to be a good thing. Now that his exzema has cleared up due to age and since he has had his nose op he's doesn't seem to bad. I heard it can affect people quite differently though.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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Maya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maya Quote  Post ReplyReply Direct Link To This Post Posted: 15 May 2005 at 9:30am
Sounds like you have had quite a journey with Micheal Vick. I agree with what you said about partial sight or hearing being viewed as 'less' of a disability than people who are totally blind/deaf. At her last school Mona was forever being picked on by the teachers because of her behaviour, yet when she was in one on one classes with the teacher aide she was fine. She once hit another boy because he teased her about failing a test, it was listening comprehension - how can she comprehend what she can't hear? But the school were so hardline on it, they wanted to stand her down for 3 days, but I fought them on it, and eventually we got so sick of it that we pulled her out and put her in a smaller country school where she is doing really well.

Janine - wouldn't it be great if the government actually directed some funding somewhere useful. Somany kids, especially at primary, hav eproblems with hearing due to glue ear, grommets etc. but there is so little support. Most kids can be fixed with grommets, but unfortunately Mona is one of teh 5% that they fail.

Maria - I hope Jayde's barium swallow gives you some answers. The waiting and not knowing is the hardest part, but if she is more settled on the Pepti then that suggests that she has some kind of intolerance or allergy. I really feel for you, coz I so know what it's like, and with Alyssa as well you must be exhausted. If there's anything we can do let us know.
Maya Grace (28/02/03)
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 16 May 2005 at 6:49am
Good on Mona! We have had lot's of bullying with Micheal and then,some kids are just annoying going up to micheal and waving there hands in his face saying "can you see that can you see it" Some kids can be nasty. He is the same behaviour wise at school one on one he's great, not so good otherwise. As far as all his problems go, the way I figure it we are lucky woth micheal! There are so many other things that could have been wrong with him his are survivable and compared to alot of other children minor, for that we are greatful.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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Maya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maya Quote  Post ReplyReply Direct Link To This Post Posted: 16 May 2005 at 1:44pm
It does put things in perspective. And even tho Mona's ORL specialist has told us there is absolutely nothing we could have done to prevent Mona's hearing loss, I am obsessive about Maya's ears and nose, and I always take her to the doctor if I even suspect she might have an ear infection. Luckily her ears have been pretty good, only one or two infections related to having a cold, but glue ear (which is what started all Mona's problems) is more prevalent in Maori, apparantly because their eustachean (sp?) tubes are a different shape to Pakeha, so we are really vigilant.
Maya Grace (28/02/03)
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The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lizzle Quote  Post ReplyReply Direct Link To This Post Posted: 16 May 2005 at 7:33pm
Hey Emma, what are the symptoms of glue ear? Just thinking, jake is a little maori boy and he doesn't get his well child checkups over here like he would do back home. would like to be on the lookout.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maya Quote  Post ReplyReply Direct Link To This Post Posted: 16 May 2005 at 8:01pm
Basically just like an ear infection - grizzling, pulling at the ear, and in older children you might notice that they aren't hearing so well. Glue ear tends to be the result of persistent ear infections, apparantly the way Maori eustachean tubes are designed they are more prone to blockages. But grommets puts most cases right.
Maya Grace (28/02/03)
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The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 17 May 2005 at 6:46am
At least with micheals main vision problem it was a fluke of nature. Apart from his squint nothing else is common in our family or can be passed down., so a quick check for the first couple of months of Jayden and abbys eyes was all that was needed. Poor you, you must rip your hair out everytime maya gets sick. I bet your vigilant.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 17 May 2005 at 10:55am
Becca ouch! Iv'e just read one of your earlier posts where you said you hated needles and mentioned some of the tests you had done. All Micheal had done was a whole heap of blood tests. The specialist mentioned other tests, however because of the ops etc and no serious problems with bleeding, just a little more than usual, he suggested we leave it until Micheal is a teenager, and just keep it on the medical records and mention it to doctors etc at treatment. But man you sound like you had it really tough. I'm glad we said no to other testing.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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Post Options Post Options   Thanks (0) Thanks(0)   Quote daikini Quote  Post ReplyReply Direct Link To This Post Posted: 18 May 2005 at 1:54pm
Things have changed lots in the last 20 years... when I was tested, that was the only way to do it, and they did all the same tests to my parents and extended family to find out who has von Willebrands... turns out its my Dad, one of his sisters, my Grandad and I think it skipped a generation to one of my cousins (but I'm not positive about that). My sister (who is 10 years younger than me) also has it.

I've had Kiya tested, all they did was draw some blood and send it off to the lab... so much less stress and hassle! It came back negative, but Nathaniel and I have some doubts as to whether or not that's accurate, as she's showing some of the things that I did at her age that sent my parents searching for answers in the first place. But that's beside the point...

As you said earlier, von Willebrands affects people differently. My Dad gets monster nose bleeds where they last for hours and he just lies on the floor with a couple of towels under his head to soak up the blood. My sister gets really heavy periods, but that seems to be the only effect so far (she's 14). Personally, it hasn't been a problem for me so far, until I was pregnant. Our family haemotologist told us that it self-corrects in pregnancy, and I had absolutly no complications with the births of either of my children but... birthing centers will not allow me to deliver there, I have to go to the hospital. I don't mind that much, but it would be nice to have the choice!
Becca, mum of 2 girls & 3 boys
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 18 May 2005 at 3:19pm
Micheals biggest problem was nose bleeds we had to send him to school with jelly beans as he would get light headed after having 5 or 6 nose bleeds while there. They quarterised every blood vessel in his nose so since then touch wood he's been fine. Hopefully the tests were right and Kiya hasn't got it. What a weird blood disorder.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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daikini View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote daikini Quote  Post ReplyReply Direct Link To This Post Posted: 18 May 2005 at 4:36pm
Sure is! Dad's had his nose cauterised a couple of times... here's a (slightly weird) tip which he does and might work for you: to contain the nose bleed until you can get to the doctor, a tampon inserted into each nostril works really well!
Becca, mum of 2 girls & 3 boys
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 18 May 2005 at 4:41pm
That's a good idea, I can just imagine the look on peoples faces when he walks in!
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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daikini View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote daikini Quote  Post ReplyReply Direct Link To This Post Posted: 18 May 2005 at 4:45pm
At least the string makes them easy to remove
Becca, mum of 2 girls & 3 boys
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nuttymama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nuttymama Quote  Post ReplyReply Direct Link To This Post Posted: 18 May 2005 at 8:16pm
This is very true. Thanks for the tip.
Abigail 06/01/2005
Jayden   21/11/2001
Micheal 03/04/1997
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