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thread: And then there was 4 - Mateauz journey with Cerabal palsey

  1. #19
    Registered User

    Jul 2006
    Melbourne
    3,715

    Thanks for sharing with us Maz

  2. #20
    Life Subscriber

    Jul 2006
    Brisbane
    6,683

    Maz, I am so glad you are sharing this, I really hope it helps you to process it all. I'm going to have to stop reading it at work though, I have tears streaming down my face already!

    You are a such a brave woman hun.

  3. #21

    Dec 2005
    not with crazy people
    8,023

    2 weeks grace

    2 weeks grace

    We're home.!!!

    Finally..I could put my darling little man in his bassinet which I placed so lovingly in our bedroom so I could always have him close. He had his own room but I just wasn't comfortable leaving him in there by himself. All the other kids went in their own rooms by day 2 but not with Mateauz. He stayed near me.

    He would often wake at 3 or 4am for a feed so I'd bring him into bed and Id end up going to sleep, on my side with him on my boob. Id be woken again at 7 by my little man latching on and feeding again. I'll never forget those moments.

    Mateauz proved to sleep alot and feed every 3 hours. When he was awake he cried and cired...I just couldnt settle him and put it down to me being over tired.

    We had a health nurses appointment on the wednesday before it all happened. I was really worried that I couldnt see mateauz soft spot anymore adn that he looked puffy....

    ah nothing to worry about...his fontenal is there...i can feel it

    hmmmm that doubt knot was back in my tummy...its just wasnt right. She also tried to get me to top up with formula as he was under 3 kg still although he was putting on 90grams a week....it wasnt enough...you can imagine what I told her about her formula cant you

    Sammi came up with Trev on the friday and spent a few hours with us. I was worried casue mateauz seemed very blue still...I was forever putting warm clothes on him and Sammi noticed how blue he was aswell. And the crying...it use to break my heart (I still cant bare him crying)

    Sunday afternoon I went over to our neighbour who is 80+ to introduce him to her...he wasnt happy and I had that funny feelign again so said I have to go.

    I tried feeding him at 9 that night and he was really funny....turning his head and crying again. At midnight I got up and at 2 I said to Jed I need a break...he just wont feed and he keeps turning his head. I made Jed watch and mateauz left arm and leg twitched when his head rolled to the left.

    I was so over tired so he'd said get 1/2 sleep and we'll see if he gets better. 5 mins later jed was in flinging the phone at me to ring the emergency department.

    I explained to them what was giong on and she said he was suffering seizures...strokes and that an ambulance was on its was......

    Those 10 mins waiting for the ambo's were one of the most slowest of my life....even slower were the 5 mins to the hospital were mateauz seizuered all the way there. These ones were worse...it was like watching a movie were they use a plastic doll as the 'baby' and do silly stuff with it. He was my little guy....almost lifeless, blue and fitting.

    You'll have to wait for my next post.....speak of the devil...he's awake

  4. #22
    rhyb Guest

    Awww poor Mateauz cant wait for the rest of this!

  5. #23
    Registered User
    Add aussienic on Facebook

    Feb 2005
    Boyne Island
    6,327

    i have watched my son turn blue and sieze before (ds2 ages newborn & 7 weeks) not nice..

    Thanks again for sharing

  6. #24
    Registered User

    Jul 2007
    melb
    8,498

    ohh hun im crying reading this. And cuddling Jacob close while he feeds!

    You are a strong amazing woman for sharing this.

  7. #25
    Registered User
    Add ~clover~ on Facebook

    Sep 2007
    travelling
    9,557

    Wow Maz.
    I can't wait to read more, but its so scary to hear what you went through.
    You are amazing.

  8. #26
    Registered User

    Apr 2008
    Adelaide
    1,741

    Thankyou for sharing your story Maz

  9. #27
    Registered User

    Jan 2006
    Brisbane, Australia
    218

    You're making me cry. The first seizure DD had was at 13months and while it was the scariest experience in my life to that date (she has given me a bigger scare since) I can only imagine just how much more horrifying it would be to watch a newborn in the middle of a fit.

    It's wonderful that you have the strenght to share this with the rest of us. Thank you, it really does help.

  10. #28
    Registered User

    Dec 2007
    Adelaide, SA
    896

    Maz, you are doing a wondeful job telling your story and the struggle little Mateauz has faced .

    You are an incredibly strong family.

  11. #29
    Registered User

    Jan 2008
    Country Victoria
    1,991

    You are doing so well Maz.

    I have tingles and tears and so much of it seems oh so familiar.

    I feel honoured to be reading about your journey.

    Deanne.

  12. #30
    Registered User

    Feb 2007
    In the jungle.
    4,809

    Geeez woman, good on you for writing all this down. Even though i already know bits of the story my heart breaks all over again for you. Thanks for telling Mateauz's story. MWAH. x

  13. #31
    Registered User

    Sep 2004
    Sydney's Norwest
    4,954

    Maz, thank you so much for finding the strength to share Mateauz's story with us. I sit here crying as you retell your story. I can feel your pain, your horror and shock in your words.

    I just want you to know that to me you are a super woman, you have endured so bloody much and yet your head is still held high. Huge hugs to you sweety

    I look forward to the rest of your story.

  14. #32
    Registered User

    Jun 2007
    Dandenong Ranges, Melbourne.
    5,673

    I'm crying maz.....

    keep it coming

  15. #33
    Registered User

    Jun 2008
    946

    Thank you so much Maz for sharing this with us.

  16. #34
    Registered User

    Jun 2008
    in the eye of a toddler tornado
    2,450

    Maz it's great to read your story I have caught some of it in bits and pieces but I always wanted to know the full story. You're such a brave woman and somehow haven't lost your sense of humour through all of this!

  17. #35
    Registered User

    Jul 2004
    5,756

    You are such an amazing woman and mother Maz. I hope it is helping you getting it all out here.

  18. #36
    BellyBelly Life Subscriber

    May 2005
    in the national capital
    1,682

    Oh Maz

    I remember when all this was happening the first time around and remember thinking then what a wonderful wonderful mother you were and how amazingly strong you were being. You retelling it all here just reinforces everything that I thought at the time 100 fold.

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