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  1. #71
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    Nowhere is offline Winner 2007- Most Supportive Of Feeding Other-Than-Breast Award
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    Happy Mothers day, to all the special needs mummas, Hope we all managed to stay out of hospital with our lil ones, We celerbrted the first mothers day out of hospitalin 5 years yesterday, which is pretty awesome.

    I dont know many of the kids or mums in this thread these days, but figured i would introduce my self.
    Im amy Mum to a awesome 5 year old.

    She is so pretty and cute, and has a gorgeous giggle that her whole body does when she laughs. She can talk up a storm and her walking is getting better over time, She has lots of ups and downs so she fluctuates with her stills a lot.

    Mik has a few differnt diagnosis but the one that ainly effect her is her Unspecifific mitochondrial/ metobolic disorder of un known origine, Well what does that mean, it basicily means she has a mito disorder but which one we dont know.

    How does it effect her, well with a whole host of issues some big some small, long and the short of it is she has had about 20 operations over the years, some on air ways but mainly stomach and small bowel and to place lines, one to fix her eye and one to remove muscle for analysis from her leg. She has next to no growth hormone in her body so take injections for that, ( which she hates) but they are helping her HUGELY she is now 97.1cm which is great for her she was 80 at the start of treatment neally 2 years ago they also help slightly with ehr blood sugar levels, Mik has a nastry habit of dropping her sugars with in moments of her IV stopping or hald hor of her feed stopping its one of her most frustrating and dangerous traits.

    Mik feeds through a tube into her small bowel and is on that 24 hours a day she only comes of for baths ( a luxury there was a time not even for that) she has a drain into her stomach that is atatched all the time and a bag on the top of her small bowel, She runs two pumps al the time these days one for feeds and ther other for something else, we are lucky to have tini little pumps and bags from the US so the tw pumps are lighter than one kanger pump. when she is feeling up to walking she carries them on her back in he tinny little bag and we clip her drain to it as well and she gets around like that. Its amazing to see her jig around the housee the child they said at one point surprised them by making it as far as she had. that was 2 year ago.

    She has global developement delay and although she can say just about any word you tell her to the understanding of them words is limited, and she has social issues etc etc who wouldnt dealing with all she has, She uses a wheelchair alot but can also walk a bit which is awesome. She has massive melt downs when she cant understand or when she is just being a funky monkey and when she is sore she goes very with in her self and there is no reasoning or explaing, Her level of understanding varries hugely in accordance to how her health is at that point in time.

    We see ther therapists every week and she ges to ed support school although is having 6 weeks of this term under the order of her drs since last surgery. We are in the process of getting her a new wheelchair but as you all know takes months like someting 6 to nine months which is fine as we have a chair for ehr now which is fine but they are ordering her chair for the next 5 to so years.

    The last 5 years have been rough and I can honestly say to the newer posters here the early days was the worst, the days of the unknown whats this whats that trying to explain things to drs i didnt realyl get my self, the scarredness etc, it does get easier. You get to the point where its your new normal where its all part and parcel of being a mum, Its still hard bloody hard and still heart renching but the day to day feeling get easier that doesnt mean the bad ones dont bring you right down over all I think day to day it gets easier.

    Mikenzee is more effected health wise than neuro wise, sure she ahs her neuro issues epilepsy, and malformation in her brain and developement wise and hypotonic CP but she isnt hugely effected neurologicaly as a first site thing its when people get to know her that them querks shine through.

    I hope you all had a lovely mothers day and i look forward to getting to know you all.

    Hi to my long time mates Peta and Sue, remember our old chat threads lol, How things have changed hey love you guysxxx

  2. #72
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    Hi all the oldies. I've read thru some of ur old chats. U were always there for each other and I'm hoping this group can be like that too!!
    Wow u have all been thru so much. Amy, I'm so glad u got to spend mothers day at home!!
    I'll drop in later and give an update. Nice to meet u all and hi to all my friends here


    Sent from my i (couldn't live without it) Phone

  3. #73
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    Hi All.

    I am also an old forum member...thought that I would chime back in...been missing in action for a while. Would be good to get some online support once again.

    I have three kids, my oldest DS has no issues, My 7 year old daughter has aspergers and ADHD and my five year old daughter has a rare chromosome disorder (1p34.2) and autism. She is the only one dx with this deletion so we dont really know what is in store for her in the future. She has autism and muscle issues, speech issues and sensory issues but she is doing absolutely awesome. She started kindergarten at big school this year and i am so proud of her. Life with a special needs child has been the most challenging thing I have ever gone through but I have made some awesome friends (hey amy xx) and am very blessed

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    what was in the air this week that had 3 of us oldies come back? lol
    Glad to see you back Amy, loving all the pics on facebook.
    I went away from the hub seeing as My eldest outgrew his special needs and so did Kane ds4...well so i thought. plus been busy working, and now also studying psychology full time, but will pop on here when i can.
    Only advice i have for new s/n mummies is dont compare your child to others. and i tell you the pride you feel in your chest when your cherub reaches a new milestone is unbeatable. my eldest having the low muscle tone started martial arts at 4 till he was one grade under black belt than quit :s. now is into running, just missed out on district for the school but is currently traing for the stradbroke island 8km adventure run. this is a kid who we were told "you just have to wait and see if he will be normal or not"

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    My rant because I need to vent!!

    I was reading a thread on here where everyone has said how they haven't lost friends having an SN child, only made them which is great. But I really do feel like I'm losing some of my friends.
    Admittedly it's not a huge loss, but it does illustrate how people can be so damn judgmental and yet at the same time complain how life is doing them wrong.

    My friends brushed me off today because they weren't in the mood to talk about Bree. I'd understand if that's all we talked about, but it's not. Both girls and their hubbies are our closest friends. We used to talk about everything and were there for each other no matter what. Now when they see me they spend the whole time telling me they don't judge me or blame me but that everyone else does, they look at Bree like she's contagious and one friend tells me how great her daughter (4 days older) is going and how hard her pregnancy (30 weeks) is because she just wants it out now.
    Oh and that same girl accidentally sent me a msg meant for the other one blaming me for endangering her unborn bub because Bree got admitted to hospital (non contagious) the same day I'd been visiting her.

    I know we have to rise above this kind of thing, but today I just felt so low and outcast


    Sent from my i (couldn't live without it) Phone

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    Hi everyone new and old!!!
    Kieran that is terrible HUGS! I must admit some of my friendships have got stronger and some have got less important since Ash was born. I had one friend who kept complaining throughout her second pregnancy that she also wanted her baby out now and I found it very annoying as Ash was a premmie like Bree and I felt awful that he was early, she didn't understand how hard it is when they come early and are sick. Fb can also be bad for me, I'm getting better but it is hard to see some people bragging about their kids so much, I know its not deliberate but it makes you feel sad that your lil one is no where near doing that.
    Hope everyones week is going well.

  7. #77
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    Hi everyone

    Just had to jump on and say hi to the new/old postees

    mum2monkey your little girl sounds like an amazing kid who has been through so much and can still bounce around the house. And you an amazing mummy what strength to just get through each day. I am not going to complain about anything anymore. You are a legend.

    suemp hi there you sound like you've been through a lot too! Your eldest is doing so well and Kane sounds like he is getting all the help he needs. Must be frustrating explaining to people why he is in EI. I get that a lot with my Will, people surprised that he has a "condition" and even after I explain the ins and outs, they look at him and nod their head confidently and say, "oh he'll be right" or something like that. Makes me want to scream at them sometimes!!

    naomismum wow you too sound like a busy mummy. Your little one sounds like she is doing so well- so great that she is going to kindy!

    Livingonaprayer hi and welcome back. Your little Alex also sounds like a great girl and I hope you can get some funding sorted out and that she can go into main****** school!

    kiz the main reason I came on was to say those friends of yours are HIDEOUS!! How dare they be so rude? I would be totally appalled by them. Some people are so selfish. And no they don't understand the stress and pain of having a bub early or sick in hospital and with ongoing issues.

    It kills me sometimes to see my SIL with three healthy children (2 of which were accidents, the first and the most recent) and she smoked and drank through all of her pregnancies: how stupid and unfair is that? And my cousin (into drugs) also has 3 healthy boys and constantly bragging on FB about the latest one and all his milestones - early - and I want to cry. But then I look at my gorgeous boy who melts my heart with his giggles and cuddliness and personality and I forget about all of them.

    Plus my family and friends who DO understand are soooo excited for me when I send through an SMS (in fits of excitement) when DS started crawling properly for instance- 2 months earlier than "expected".... and they all jump for joy for us instead of saying things like fiiiinally . They are the ones to keep close to you

  8. #78
    Nowhere's Avatar
    Nowhere is offline Winner 2007- Most Supportive Of Feeding Other-Than-Breast Award
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    Quote Originally Posted by kiz View Post
    My rant because I need to vent!!

    I was reading a thread on here where everyone has said how they haven't lost friends having an SN child, only made them which is great. But I really do feel like I'm losing some of my friends.
    Admittedly it's not a huge loss, but it does illustrate how people can be so damn judgmental and yet at the same time complain how life is doing them wrong.

    My friends brushed me off today because they weren't in the mood to talk about Bree. I'd understand if that's all we talked about, but it's not. Both girls and their hubbies are our closest friends. We used to talk about everything and were there for each other no matter what. Now when they see me they spend the whole time telling me they don't judge me or blame me but that everyone else does, they look at Bree like she's contagious and one friend tells me how great her daughter (4 days older) is going and how hard her pregnancy (30 weeks) is because she just wants it out now.
    Oh and that same girl accidentally sent me a msg meant for the other one blaming me for endangering her unborn bub because Bree got admitted to hospital (non contagious) the same day I'd been visiting her.

    I know we have to rise above this kind of thing, but today I just felt so low and outcast


    Sent from my i (couldn't live without it) Phone
    hugs that sucks about your friends there obviously jack asses ignore them hon xxx

    As for the text message about endangering her baby that she wants born at 30 weeks tell her to f*k off and that CP isnt contagious and nor are the health complications that go along with it. she sounds like a stupid b*tch

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    well we have our confirmation of Cystic Fibrosis. Have had so many drs appointments lately I dont know if im coming or going. We have been asked to get her weighed fourtnightly to make sure she is gaining. She has also been put on ABs for her childhood at least

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    just a quicky. Just went and saw special needs teacher at main ****** school. He will be going there full time next yr as the closest s/needs school has pre prep but no prep. silly . but he will be allocated funding to have one on one time with s/needs teacher at local school.
    Got a question. The special needs teacher thinks Kanes learning problems are probably from his seizures as a baby. His MRI was normal, EEg abnormal but i know eegs arent accurate (having had many myself for epliepsy). If the seizures had caused brain damage wouldnt it of showed up in MRI?
    thanks


 

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