| Babies & Children With Special Needs & Disabilities Does your baby or child have a special need or disability? Share your experiences, challenges and triumphs here. |
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August 18th, 2009, 07:23 PM
|  | "Sshh, my belly button's asleep!" - Miss D - 2.5 | | Join Date: Oct 2007 Location: Brisvegas
Posts: 2,055
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 yay for diagnosis!  once again, thanks for sharing. youre amazing!
__________________ Me (28)  DH (29)
DD#1 Miss D 29/1/07
DD#2 Little E 24/10/08  |
August 18th, 2009, 07:29 PM
|  | Platinum Member | | Join Date: Sep 2008 Location: Melbourne
Posts: 436
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Well done Christy, for making it through such a confusing and frustrating maze to here. While nobody every wants to hear that their child has ASD, so many parents have told me that getting the diagnosis was actually a relief. That this was the beginning of getting real support, strategies and answers. That their child, while different, was not alone in their differences. And that they too were not alone in the challenges of parenting a child on the spectrum.
Hats off to you. You are an amazing mother. And you tell your story very well - it will be extremely helpful to others going through this painful and confusing journey.
I'm more than happy to chat to you about EI services if you have any questions or concerns. I'm no expert but have worked in several centres and done home-based intervention for quite a while. I'm sure there are others here that can also offer their advice and experiences.
All the best for the next step on the road.
__________________ Kat
- formerly katabelleh  'Let it go, let it out, let it all unravel. Let it free, and it can be a path on which to travel.' Michael Leunig |
August 18th, 2009, 07:33 PM
|  | Platinum Member | | Join Date: Jul 2007 Location: melb
Posts: 4,098
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Hugs hun a diagnosis must be a relief for you. You are so strong, thank you for sharing.
Good luck with finding out all the early intervention available to help Matilda and your family.
__________________
feeb 30 and DH 34   since 8/7/08  |
August 18th, 2009, 07:45 PM
|  | | | Join Date: Jul 2006 Location: Brisbane
Posts: 11,379
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__________________
MR  DH, married since 1993
DS 12/02/05 and DS 25/09/06 BellyBelly Annual Member Survey for 2009. Help us improve BellyBelly and go into the draw to win 5 x $50 Online Store vouchers!!! When I post in this colour I am moderating, otherwise I am expressing my own opinion. |
August 18th, 2009, 07:50 PM
|  | MPM - A mother in need is a friend in deed | | Join Date: Dec 2005 Location: fartsville
Posts: 8,204
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Honey....I'll hold your hand along side you.
Im here anytime |
September 7th, 2009, 03:57 PM
|  | | | Join Date: Oct 2003 Location: Forestville NSW
Posts: 13,880
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So how do you prepare an Autistic Child for Kidney problems? How do I explain it all, when I don't understand what is going on myself?
We see a specialist tomorrow as her scan didn't show good results, neither kidney is functioning as well as it should... we see the specialist for a plan of action, and then a series of more tests. I guess I just don't know how to explain to her all of what is going on. Her routine is destroyed, nothing is going according to her plan... she has to have needles and sit still... and I have to be strong.
On Thursday she had a kidney scan where they inject nuclear radiology into her vein and then 3 hours later she lays on a table and has a 45 minute scan. First, I phoned a few weeks ahead of time and said that it took 3 nurses, a registrar and me laying on top of her to get a canula in when she was sick. They said they would wait and see. So when they were about to put a needle in, she started screaming and thrashing and they said "we should wait for her to calm down". I assured them that the best thing would be to get it over and done with as she could go on for hours. I then asked for help restraining her and wound up having to get my DH to help as well.... DH wound up on the floor and I had to hold her... the nuclear medicine went out of her vein as she was thrashing about.... it was scary stuff. Horrible to see, then they had to flush it out with saline which is very painful...
Then we went away and came back for the scan. She developed an urinary tract infection as this was going on... which is highly unfortunate as she's been on antibiotics since May for this scan. She wound up very sick and we nearly had to go back to hospital for more treatment after being there all day.
The scan isn't good... thats all I know until tomorrow... So another day off school for her, another day out of routine, just in time to get into a routine to go on holidays.
No wonder I'm completely gray.
__________________  *meh* I'm a lucky woman.... I just fail to see it sometimes |
September 7th, 2009, 08:49 PM
|  | | | Join Date: Nov 2004 Location: Chasing Daylight...
Posts: 3,978
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Christy I'm sorry the news wasn't better Thinking of you all - hope tomorrow is ok.
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September 8th, 2009, 08:37 AM
| | BellyBelly Member | | Join Date: Mar 2005 Location: Sydney, NSW
Posts: 2,977
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How awful for you, what a traumatic thing for you to all go through. Im just posting as we have had kidney issues here, kidney reflux. Is that what they think it is? If so all I know is that it is treatable and manageable. Hang in there, you really are an amazing mother. I have been reading your thread and not only are you and your family amazing as a family, but you're a great writer too. You've shed light on an important topic, and you do it in such an eloquent way.
All the best. xoxoxo
__________________
ME, DH
DD1,11 years, DD2 , 3.5 years
DS1, 3/3/09  |
September 8th, 2009, 08:44 AM
|  | Once upon a time, In the night garden, Iggle Piggle went for a walk? | | Join Date: Dec 2006 Location: Out of my mind. Back in five minutes...
Posts: 3,544
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Thinking of you today. Hope you get some answers and are able to make a workable plan... xo
__________________  Rufalina and  Little Mate (June 08) Looking forward to meeting out new little guy in summer!!! We are working toward a  ...Wish us luck!!! |
September 8th, 2009, 07:50 PM
|  | BellyBelly Life Member - Love all your MCN friends | | Join Date: Jun 2004 Location: The Festival State
Posts: 1,893
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blimey, that kidney test sounds horrible, both you and Matilda have my sympathies.
Btw, gray is the new black. (small attempt at humour).
thinking of you
__________________ 
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September 10th, 2009, 01:00 PM
|  | "The Future influences the present just as much as the past does" Frederich Nietzsche | | Join Date: Mar 2006 Location: Where the sun shines, the birds sing, and children don't sleep
Posts: 4,001
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Christy, you are amazing. I don't know I'd be strong enough to endure all you and your family has endured. I am so pleased you are finally getting answers and assistance and hope Matilda's upcoming surgery goes well.
Perhaps some of the Mum's on BB who have children with Aspergers or Autism could write a collective bok about their experiences and get it published? I'm sure it would be a best seller and so so helpful. Esp if it contained up to date information on where to go for help and support.
MG
__________________
MG  born 21.02.07 MG's Blog Don't wait for a light to appear at the end of the tunnel, stride down there... and light the bloody thing yourself!" - Sara Henderson. |
September 10th, 2009, 01:36 PM
|  | Because the bear was chasing Bertie....... | | Join Date: Jul 2006 Location: Melbourne
Posts: 5,031
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Christy, you are an amazing mum . I wish I could do something to support you, in what is clearly a very difficult journey. I truly hope that the diagnosis will somehow make a difference for all of you. And I hope that the next kidney stage goes as well as possible
__________________ Me & DH The love of my life
Angel baby 12/07/06 @ 11 weeks, Tiny angel Jan 2009 DS 29/04/07 - Breastfed for 2 years and two months!  "Don't cry because it's over, Smile because it happened" |
September 14th, 2009, 07:32 PM
|  | Children reinvent your world | | Join Date: Jan 2008 Location: At home
Posts: 1,406
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What an amazing mother you are.
__________________ live with intention. walk to the edge. listen hard.... laugh. choose with no regret. continue to learn.
appreciate your friends...live as if this is all there is. - mary anne radmacher  | | |
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