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  1. #1
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    Default Introduction thread to help out new people!

    Hello all

    I worry that the SN area might seem a little intimindating to mums new to the site as we all talk a lot and are already familiar with the kids and their SN and all the lingo that goes with that.

    I thought that perhaps a thread where we say who we are and what our kids have and what that means might help people feel more familiar with us and better able to keep up with chat once they join.

    ASD chat welcome in this thread also.

    If you all like the idea post away hey?

    Last edited by naiwen; 13-09-2010 at 17:41.

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    What a fantastic idea!

    I am a relative newbie and do find it really difficult to keep up with the SN chat thread at times. Despite the fact that you girls have been so welcoming with my infrequent posts.

    Anyways I am a mother to 5 beautiful children. We were only 16 and 18 when our eldest was born she is now 19 and our youngest, Noah, is 19months. Noah has Alagille Syndrome which was diagnosed at 1 week, we have travelled to the US last year to consult with Alagille Syndrome specialists and were told Australian doctors were fantastic in diagnosing him at such an early age. This rare syndrome has so far affected his liver, heart, eyes, bones, growth, vascular system and facial features.

    Obviously it is stressful with him having a multi-systematic discorder but what can we do these are the cards we have been dealt with. So lets play the game the best we possibly can, which I believe is one day at a time. Enjoy what we can and try not to dwell on what we can't.

    I love reading everyone's stories so please write in and let us hear them!

    Take care and much love,

  3. #3
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    Loopy Linda is offline Creator of gorgeous guys Carer of beautiful girls
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    good idea julie...so where is your introduction?

    well i am linda, i have 3 sons. my baby is growing too much and is now 15 months old! anyway he was born with a cyst in his brain. if was growing very fast and at 4 days old he was operated on to puncture it. op went very well and he is doing really well these days. as a result of the cyst growing in his brain he does have a misformed part in hsi brain, Agenesis Corpus Callosum is the name and it is basically the connection between right and left hemisphere that is misformed.

    he also has another cyst growing at the moment and in June we go back for another MRI to look at it

    and sorry our thread can be overwhelming... but we are a boring lot really and we love to chat! please join

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    Edited
    Last edited by naiwen; 13-09-2010 at 17:41.

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    Hi all, I don't know if Imy fits the 'SN' label as her issues are very minor in comparison to everyone else I have read here.

    Imy is 3 1/2, She has started having seizure which are either Absence or Atonic Epilesy (although followup paed appoint on next week to get a proper diagnosis). She also now has severe/profound hearing loss in her right ear.. may or may not be linked to her seizure activity.

    She seems to not maintain blood sugar levels correctly.. which again may or may not be linked to her seizures.. Hoping Drs have some answers on tues

    I hope I can join in here to - because all you ladies are so helpful and full of advice

    So hi, I'm Shannan

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    Loopy Linda is offline Creator of gorgeous guys Carer of beautiful girls
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    common mistake, sn has no pre requisites. there is no level to reach before you are accepted, we like everyone and welcome along shannan

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    This is a good idea for a thread - thanks for suggesting it!

    I'm Stacie and my DS Kaleb is 3yrs old in a month. We are currently in the process of fighting tooth and nail for a diagnosis so we know what we're dealing with. He has severe problems with self-regulating and attention/impulsiveness control which leads us to believe that ADHD is likely.

    Looking forward to hearing from others who are joining the threads! I don't often get into the SN or ASD thread.

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    Hi Ladies, I've stuck this thread because I think it's a good idea and needs to be kept 'on top'

    Let me know if you want it unstuck!

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    To all the new SN mums/dads welcome!!!

    My name is Lea and i have a little boy who is 3 in march he was born via emergency caesarian and was born with severe brain damage which occured during the birthing process as he suffered from perinatal asphyxia and is classed as hypoxic ischemic encephalopathy.

    He also has an absent septum pellucidum(part of brain) which affects his eyes causing septo optic dysplasia(under developed optic nerves) which in turn has caused him to only have his periphial vision.He also suffers from cerebral palsy and has severe development delays and is still unable to walkm,talk,crawl,etc.

    He is also on a nasal gatric tube for feeding as he feeds very poorly and will be looking at a gastrostomy(belly peg tube).He also has a self dislocating jaw which is being looked st next month.He is currently at between 2-6 months developmentally in most areas.He also suffers from severe sleep issues due to his inability to regulate between night and day because of his sight issues.I think that pretty much sums up everything.For his whole story click below where is says Reece's Story.

    ReecesMum. (Lea)

  10. #10
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    Nowhere is offline Winner 2007- Most Supportive Of Feeding Other-Than-Breast Award
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    Im Amy, I have a little girl Mikenzee she will be three in march she has a few hurdles in life but most importantly she has some great quailities and is a gorgous little thing, Yes im very one sided lol but im not the only one that things she is great lol

    Mikenzee has a disfunctional gut so feeds into her small bowel through a broviak line and has a gastric drain in her tummyshe has major gut intolerance to everything and servere malabsroption, She has chiari malformation ( brain malformation) and has cysts on her pineal gland and has to have regular MRIs to see when they need fixing, she has epilepsy, sensory intergration disorder, hypotonia and hypomobile joints, she wears AFOs and has a walking frame and a wheelchair, she is short sighted and has glassed ( got them today ) she had sleep apnea and graduated of a hospital moniter for her 2nd birthday, she is still FTT and likely always will be she also has short stature, she also has laryngotraceomalacia and had to operations to fix it, as well as asthma that is prety much controled, and a heart murmer that we will be finding out tomorow if she needs surgery

    They are still not 100 percent sure what exactly causes DDs issues but they know she has some sort of Mitochondrial disorder, we will find otu more this thursday we should also find out then is she has CP or not


    Mikenzee is great speech and is a very very clever wheelchair diva, Just ask her she will tel you lol


    So yer thats all mikis hurdles wel what i can think of im sure I have mised some, But no matter what gets thrown at miki she just brushes is of and get on with life she is a great great little girl and what she lacks in physical size she makes up for in heart and determination, She is a milion times stronger then any one I have ever ever met


    I love my little Diva


 

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