+ Reply to Thread
Page 2 of 12 FirstFirst 1234 ... LastLast
Results 11 to 20 of 111
  1. #11
    Join Date
    Oct 2006
    Posts
    1,066
    Thanks
    6
    Thanked
    11
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    I'm Shauna I have a almost 4 yr old ds and my SN little girl Scarlett who is 14mths old.

    Scarlett has dysplatic and dysmorphic kidney so in other words they don't really look like kidneys are too small and don't work properly. although her kidney function is good at the moment she is having some issues with blood pressure which is related to her kidneys, she also has poyuria which means she pees lots but this is fluctuating at the moment as well so we're on a good streak and not using a million nappies a day LOL.
    Scarlett also has hypotonia and hypextendable joints which means she finds it hard to master gross motor skills however with her new shoes she got yesterday she is starting to walk much better .

    We are in the waiting phase, waiting for her to grow as she is small, waiting to see if her kidneys fail as we pray that they don't and waiting to find out what is in store for us next.
    but saying that we live each day to the full knowing that we don't know what lies ahead for us but we just love our little girl and our ds they are my life !

    oh and I can say that Amy's little girl Miki is the cutest brightest little button I have ever met if only my almost 4 yr old had her speech and I only hope my little girl has her determination in life I will be a happy lady

  2. #12
    Join Date
    Dec 2007
    Location
    South Sydney
    Posts
    812
    Thanks
    0
    Thanked
    2
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    my name is Nicole. and i have three children, jonah who is 7, hannah 5, and naomi will be three in early march. she is the reason i am part of the sn chat thread and ASD chat thread. she has Autism spectrum disorder, dyspraxia and hypotonia, sensory integration disorder, as well as a deletion on chromosome one. she also has a redundant colon leading to constipation issues and she has reflux. i love her to bits and she is so much stronger than i ever will be....

  3. #13
    Join Date
    Nov 2007
    Posts
    48
    Thanks
    0
    Thanked
    3
    Reviews
    0
    Hi, my name is Fiona and i am mummy to 3 1/2 year old Bella. She has Mitochondrial Disease (complex 1 and 4), and as a result has a Chronic Intestinal Pseudo Obstruction, severe GORD and has been TPN dependent for 3 years. She is also globally developmentally delayed, has verbal and oral dyspraxia, Autism and Left Ventricular Hypertrophy. Has spent most of her life in hospital battling sepsis as a result of gut translocation of polymicrobial bacteremia. She is extremely challenging but we love her to bits. She is the strongest person i know and the most adorable little munchkin! She is teaching her medical team something new each week!

  4. #14
    Join Date
    Apr 2008
    Posts
    63
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Great idea! I get so overwhelmed reading the SN's chat. Poor little ones... They are so brave.

    I have a son 6 and a daught 19MO. Jasmin suffered Stage 2 HIE and a pnuemo thorax at birth.

    She has CP, hypotonia. Can't talk or walk but can do everything else she wants to.
    Last edited by Forest; 28-02-2009 at 09:06. Reason: updating

  5. #15
    Join Date
    Feb 2009
    Posts
    180
    Thanks
    7
    Thanked
    26
    Reviews
    0
    Hi there, great introduction idea to the forum. I'm Lea a mum of 5, Aneeta 26 (with two of her own Kairo 4 and Jordan 3), Joshua 19, Bindi 13, John 4 and Aleacia 2.

    Leacie is my wonderful SN princess, who has been diagnosed with quadraplegic CP level 4 although she is yet to have a cause pinpointed. Her brain scan and MRI were both normal and we're still awaiting metabolic disorder test results. She was 2wks overdue, normal delivery, no problems what so ever until she wasn't reaching her expected milestones at 8mths.

    Scope say she doesn't present as a 'typical' CP child as her speech is unaffected, she doesn't drool or have swallowing problems. So I suppose we just keep playing the waiting game (have been waiting for her metabolic test results since Aug 08)

    We had THE most wonderful Christmas present from her, she learnt to crawl (well in her own fashion, but hey, she's mobile ) I look forward to getting to know you all a bit better.

    PS. Sorry but I tend to write essays, lol

  6. #16
    Join Date
    Dec 2007
    Location
    South Sydney
    Posts
    812
    Thanks
    0
    Thanked
    2
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    hi. my name is Nicole and i have three children, jonah 7, hannah 5 and naomi almost 3.

    naomi is my sn kid. she has del 1p34.2 chromosome abnormality and autism. she also has dyspraxia and sensory integration disorder.

    life just wouldnt be the same without her. i love her to pieces.

  7. #17
    Nowhere's Avatar
    Nowhere is offline Winner 2007- Most Supportive Of Feeding Other-Than-Breast Award
    Winner 2010- Most Optimistic Poster Award
    Winner 2010- The Most Supportive Member Award
    Join Date
    Jan 2007
    Posts
    11,112
    Thanks
    365
    Thanked
    1,623
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 postsEmerald Star - 10,000 posts
    Quote Originally Posted by Prickle View Post
    Hi there, great introduction idea to the forum. I'm Lea a mum of 5, Aneeta 26 (with two of her own Kairo 4 and Jordan 3), Joshua 19, Bindi 13, John 4 and Aleacia 2.

    Leacie is my wonderful SN princess, who has been diagnosed with quadraplegic CP level 4 although she is yet to have a cause pinpointed. Her brain scan and MRI were both normal and we're still awaiting metabolic disorder test results. She was 2wks overdue, normal delivery, no problems what so ever until she wasn't reaching her expected milestones at 8mths.

    Scope say she doesn't present as a 'typical' CP child as her speech is unaffected, she doesn't drool or have swallowing problems. So I suppose we just keep playing the waiting game (have been waiting for her metabolic test results since Aug 08)

    We had THE most wonderful Christmas present from her, she learnt to crawl (well in her own fashion, but hey, she's mobile ) I look forward to getting to know you all a bit better.

    PS. Sorry but I tend to write essays, lol
    you answered one of my questions in here that i asked in SN chat thread lol teach me for skim reading heheh, RE the metobilic stuff its a totaly night mare trying to firgure it out isnt it

    Well done on the crawling thats great

    PS that aint no essay lol we are all chataboxes in the SN chat thread we all rights essays hehe

  8. #18
    Join Date
    Feb 2006
    Location
    Ocean Shores
    Posts
    3,562
    Thanks
    6
    Thanked
    114
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    I'm a bit infrequent qith my visits these days cause life has become much to hectic and I just don't have time, but hopefully I'll be back soon so I guess I'll introduce myself too.

    I am Tegan. Single mummy (though I have a new bf!!!) to Jacob. He is 2 1/2 and has been diagnosed with global dev delays and epilepsy. His development is coming along well, all except the speech side of things. And we went through a lot of trial and error to get his seizures under control.

    Not much else to say bout us really!!!

  9. #19
    Join Date
    Feb 2009
    Posts
    46
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Hi, my name is Kylie. I am a young mum to 3 beautiful children. Jasmin is 4, Brandon is almost 3 and Emily is 4 months. Jasmin was diagnosed with a VSD (hole in her heart) at 6 weeks, she also got hospitalized numerous times over her first two years due to Bronchiolitus (later diagnosed as Asthma) which she ended up really sick in
    PICU because it was putting so much stress on her heart. Jasmin has also recently been diagnosed Autism which we are still coming to terms with. I look forward to chatting to all you other SN mummies.
    Kylie

  10. #20
    Join Date
    Dec 2007
    Location
    South Sydney
    Posts
    812
    Thanks
    0
    Thanked
    2
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    hi kylierenee

    my daughter naomi has also been diagnosed recently with autism. we are still trying to get our heads around it as she has a chromosome deletion causing a sydnrome so we dont know what is causeing what lol!. where do you live? i am in sydney.


 

Similar Threads

  1. Replies: 13
    Last Post: 04-04-2012, 10:49

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
FEATURED SUPPORTER
Baby MonitorsLooking to buy a baby monitor? :: Read viewer reviews of baby monitors BEFORE you buy :: Buy at a local or online Baby ...
REVIEWS
"Made bed time less anxious"
by Meld85
My Little Heart Whisbear - the Humming Bear reviews ›
"Wonderful natural Aussie made product!"
by Mrstwr
Baby U Goat Milk Moisturiser reviews ›
"Replaced good quality with cheap tight nappies"
by Kris
Coles Comfy Bots Nappies reviews ›