And then there was 4 - Mateauz journey with Cerabal palsey

Lots of hugs to you and Mataeuz such a tough boy and a brave mummy

Maz babe you are the strongest woman I know *mwah*

:hug:

:hug: Maz you are doing so well.

Thankyou again for sharing your and Mateauz journey.

Deanne.

Oh Mazg my heart is breaking for what you were put through, thanks so much i feel honoured you are sharing this xxx

Oh Maz my heart is breaking for what you were put through, thanks so much i feel honoured you are sharing this xxx

Oh my goodness Maz :hug:. You are one amazing woman, I can't believe what you and your precious boy and family have been through. Thank you so much for sharing your story, you tell it so well. I look forward to reading the next installment.

Thank you so much for sharing. Your courage is unbelievable.

Thank you Maz, for sharing your incredible story - you are quite amazing.

More :hug:
I really don't know how you found the strength.

oh hun, even thought I know most of your story its amazing to hear you tell it bit by bit.

Once again, I am totally inspired and in awe of you.

The part where you were having to tell Willhelm that his sister was a brother, I'm pretty sure my anxiety levels doubled just reading that... and that was only a miniscule part of your story :hug:

:hug: Maz. What a journey you have had hun. I am crying so much reading this. :hug:

Maz - thankyou for sharing your story, I am sitting here with goose bumps, wanting to hear more of your journey. Your are so strong.

oh Maz, I am sitting here in tears, that lump in your throat from the extremem anger you feel, I had that same feeling when DS was tiny, I will ever forget it.

I remember when Matueuz was born and then got sick, I was logging on here several times a day to look at the updates on how he was doing and how you were holding up.

I just want to wrap my arms around you and cuddle you forever, its not fair that you had to go through all this. you are an incredible woman, you really are.

Oh maz, I am so happy that you're able to write all of this down. It must be so hard for you to do, but it'll be very good for you.
I have tears right now, no way I'm going back to bed now.
You've done an amazing job with your children, you should be very proud of your efforts. Not once have you given up, you take it all in, and think of how you can deal with it, and fix it.

Maz you are one very strong and brave lady. I applaued your strenth.

Wow Maz - I am truly amazing at what a journey you have been thru with your little man.
You & Jed are wonderful people, and I guess at the time, you felt so lost, but, when i read your story, I am amazed at what courage, strength and determination shines through. I dont know if I could have handled the situation as well as what you have.
Maz, you have a remarkable way of telling your story, you have taken us all with you, and shown your true and raw emotions. It must be a difficult thing for you to relive, and to open up to us all, Thank you so much for doing so.
I am deeply in awe of you, and have always been admired your 'say it as it is' personality, and these trials have made you who you are today.
xx

Wow Maz - you are an amazing, amazing woman. :hug:

kaz

:hug: Thank you so much for taking the time to share this. Your strength and courage that you pulled from somewhere, even thought you might not have felt it at the time, is amazing. You are a totally awe inspiring woman. And you have one lucky family and son. xo

Maz - I have tears streaming down my face reading your story, thank you so much for sharing it.

You are a strong and amazing mother, Mateauz is so lucky to have you!

D day continues

I sat in the front of the ambulance as it drove from the Mercy to the Royal Childrens. I sat there listening to the doctor and the nurse talking about some personal things and I began to fume. My son was laying there motionless next to them and all they could do was think about them selves.......over reaction due to stress at the time but I snapped and asked them to please shut up to which I got a blank stare.

Weaving our way through the Royal Childrens was a headache. I was lost instantly and followed the staff like a lost dog. We were situated on level 4 I think....I honestly cant remember yet I know at the time when ever those elevator doors opened on that level I cringed. There were pink bottles of solution in front of every door and you had to wash your hands every time you entered. Heaven forbid you forgot...3 firm smacks were in place with a stern look.

Room four bed 4...everything 4...yep must of been level 4 cause all the numbers were the same. There were so many monitiors and beeps going on. I looked over to a weary looking woman who managed a weak smile. The look of pain and dispair mirrored exactly how I was feeling. Yet again questions and 3 more reruns of what had happened to Mateauz to this point. By this stage I was ready to collapse as I had not slept in 40 hours. I so needed sleep but fear factor kept me going.

I sat there looking at the other babies thinking
why is he here...
The other babies in the room were all premmies, sun googles on, under UV lighting and my little guy looked what I thought was normal (he wasnt but I didnt see it).

I was asked if I had somewere to stay for the night...of course I did...the floor right next to my son. Sorry but that wasnt an option. They tried frantically for an hour to get me somewere to sleep as I refussed to leave him and was BFing. I slept on a fold our couch in the parents lounge that was located outside the wards but in view of all the room windows 2 min's from him. I dont think I really slept that night..I layed there for ages and watching were he laid feeling like I had let him down. Every time I saw a nurse or doctor go to him I sat up and watched like a hawke. it was only when they went away that I let myself relax enough to lay down again.

The next morning I was given a room in the parents section of the hospital. It was small, smelly and felt dirty but I was close to my baby and that was all that mattered. I was also given a voucher to use at the hospital kitchen that gave me free meals as I was BF mateauz...that helped out as food was expensive there and I did dare venture away from the hospital incase something happened.

The results from the lumbar puncture came through. STAFF infection and meningitis. More annitbiotics (he was on 3 different types), more tubes...new drip..more blood tests. Another lumbar was to be made in 3 days time and the hole time all I kept thinking was to keep pumping my bb's, my milk's going ot help him. They were red, sore, grazed but I just kept doing it. It was almost as if I was taking my pain, my frustration out on the dame expressing machine. I feed mateauz, went and expressed what ever was left...then went back an hour later...expressed again, and then waited until his next feed for the process to start again.

The staff were wonderful. I was aloud to hold Mateauz when ever we needed to be together. They never stopped me from holding him and I am eternially greatful for that. I still felt like my chanch to bond with him had been taken away...like we were always being watched due to the seizures. I use to sit there, storking his head as he layed curled up in my lap for ages with tears streaming down my face.

My heart was aching so much at this time. It wasnt just for Mateauz...my baby girl was at home asking were mama was. I missed my morning snuggles in bed with her and the smell of her hair when she hugged me, her big green eyes and her infectious smile...my darling Wilhelm..I had prepped him up for his first day at school and I couldnt even take him. I couldnt even see how excited he was to go with his big brother...and my darling Nikolaus...his big soft kind eyes would often be the last thing I imagined seeing at night....and I knowing that Nikolaus had cried when we told him that the baby was a boy because he was scared of having another brother with autism tore me inside. How could I explain this to him? he's already had so much taken away now this!!

And Jed....I could barely bring myself to ring him some days for the pain. Jed's sister had CP as well and it was due to her birth. This would bring so many memories back for him...what had he done to deserve this? First his sister and now his son!

........3 days after we arrived....Mateauz had another MRI.............

Maz - i don't think you realise how much of an inspiration you are to so many of us. not only have you survived a life-altering event with your fantastic little Mat, you've gone on to grow and thrive - and then given us the privledge of sharing so much of this journey. you've let us share in the most intimate and painful moments you've shared the past 12 months, given us a glimpse of the heartache you've lived through, and we all know the amazing person you've continued to be in spite of this pain

i really hope this sharing is helping you to process things that i'm sure have been repressed for months, to allow you to move through and beyond this, to heal the breaks in your heart

you're amazing hun! i really hope you can see that!

BG

Reading this journey, I am feeling every raw emotion in the book. I can't begin to imagine what it would be like to live through it. You have always been an inspiration to me hun, I admire you so much. :hug:

This is my last chance to sign into BB before going away for a week. I will be waiting to read the rest of your story when I get back. I am so proud of you for sharing, you are such a help to so many women on here.

I am crying reading your journey hun. I remember all too well the feeling of missing the older kids.

Take your time hun. Write when you are ready. :hug:

The MRI's

The first MRI showed significant damage to the left hand side of Mateauz lower brain. There were clots still 'floating' around in that section but the main clot that had the doctors worried was the extremely large on in his Vein of Gaelen..the main artery to the brain. This appartently was extemely rare....typical...friggen Murphys laws.

I had seen so many specialists......Nuro Surgeons...physio's, speechies you name it...all of who I had to repeat our story time and time again. I really wished I had a little tape record so i could have just pressed the replay button. I got so sick of hearing my own voice in the end. And everytime without fail...everytime they had to prod him like a cow...roll him over...check his reflexes. I just wanted to pick him up and come home...run away from these lies of sickness and lies of brain damage. All I kept getting told was the bad things...were was my rainbow...were was the sunshine after the storm?

We had 4 days of waiting from one MRI to the next. We had to give the clot time to see if the medications were stopping the growth of the clot or if it infact was increasing in size. 4 days of living on a knife edge emotion wise. 4 days of total blank and information overload!

It was in these 4 days that I found a computer and managed to log onto the net and start researching. I wasnt going to let this be the bee's all and end's all. No way! It was also the time when I could get on here...Belly belly...my friends and let everyone know how were we or weren't going.....I often sat at that lone computer at 12am at night to read of happy stories of everyone lives...i didnt post..I just read how well everyone was doing and it gave me the strength to keep going..the motivation to put one foot infront of the other.

I looked forward to family visit's..to my closest friends coming in to see me..not that I really remember much of it. I couldnt look at Sammi without crying the first time...I honestly dont know how she and Melbel sat there with me the way I was. I had no thoughts...no mind nothing. God, I didnt even have any dame clothes until Melbel bought me a bag full. I would have been lost completely with out those 2 girls.

The head honcho Nuro came and saw me..along with the team. she sat me down while they fussed about with Mateauz and said that we would more then likely be going to another hospital to have a wire inserted into the main vein in Mateauz leg that would lead to the clot in his brain and hopefully shatter the clot...BUT it came with risks....even more permanent brain damage. What the hell are you suppose to think when someone tells you that?

Lets just use your baby as a pin cushion shall we?

how does **** off sound?

If the clot was still grown then we had another heart breaking discission to make...give Mateauz a special drug that would give him a 60% chanch of death or allow the clot to grow until it exploded and him die painfully anyway?
How the hell could I process something like that with Jed let alone by myself in a matter of 2 hours???? I rang Jed so upset and said I just wanted to bring him home...if he was going to die then I would prefer just to bring him home and let him die around his family with no wires, no machines...just love from us all. It was so hard to do this alone..my screams echoed around in my head and my tears were held in the back of my throat.

I couldnt handle the testing anymore....I told them to stop until after the MRI was done. Thankfully they understood. I just couldnt hurt my baby anymore...he'd been through enough already and was only so little. Yet when he heard my voice his eyes opened and looked right at me..there was a sparkle, recognision.....a bond that only mother and child can carry. Everytime he looked at me...I tried with all my might to send positive vibes through to him...fighting vibes. I prayed all the time, prayed that my sunshine would live and prove them wrong.

I would walk through that hospital and see so many sick kids in there...kids that were grey with sickness, bald due to chemo, limbs missing yet they all had smiles on their faces. There was someone always worse of then us....yet they didnt let their illness effect them. These kids gave me the strength to continue and push to get the answers.

I spoke to one of the Nuro Surgeons about the dead brain cells that Mateauz had. She said that as Mateauz was so young that other parts of the brain would carry on parts of the work of the dead cells. This on its own switched a light on in my head. I went away and googled...everything that I could...its at this time that I read research that suggested that breast milk carries stem cells...AHHH ha another light bulb moment. I poshed even harder to breast feed then. I started massaging Mateauz everytime I saw him. For hours on end, I stood there, storking his legs, his back, his face just to get the circulation going. For hours on end I would either hum or sing

Sing....sing a song...sing it loud....sing it strong

Dont worry if your not good enough - for anyone else to hear

Just sing....sing a song

His first smile was when I was massaging him and as i started the first bars he smiled.....**** my son knew it was me!!! I felt like screaming WOOOO HOOOO but just did a happy dance inside.

MRI day came...I sat in the waiting room on the phone to Jed crying. Im not a very patient person...I need order and routine (hmmm bit spectrum like isnt it lol) so this waiting game was driving me insane. Ive still got the dame ear muff's they put on him in the tunnel you know...and I cant bring myself to look at them yet. Maybe one day after I print this all off for him I can but for now...no way.

So the waiting day for the results began....had the clot grown at all or was it still the same size...........

oh god Maz how did you do it. Its hard enough reading your story without crying, without having actually been the person that they told that to. I could not, beyond my wildest and worst dreams imagine what it must of felt like to be told that my tiny baby die.

I pray 2009 is a much much happier year for you.

I really cant find the word to say to you Maz, or to any of you strong and amazing women... I always think to myself that I really dont think I could or would be as strong or cope in the same situation... Thank you so much for been brave enough to share your story, reading these stories make me have hope :hug:....

god its hard reading your words Maz, I don't want to cry in front of the kids or DH for that matter.
You are so strong.

As hard as it is...im not going to answer anyone yet...its hard enough getting these words out without crying over everyone's thoughts of me.

oh must add..the best is still to come.,..klennex's on the ready please

i've already used a fair portion of the box of kleenex mazzie!

i understand it being difficult to answer individually - just know we're all here for you. it must be emotionally devastating to relive all of this - you have lots of people here holging your hand through every step hun

No words maz, just emotion....

and somehow throughout this you found the time to make me nappy covers.... what a gift you are to this earth, your children are truly lucky to have you as their mother.

You're an amazing woman. Some much strength.
Thank you for sharing your journey with us.

xx

Maz hun!

I knew you needed to get this out and even now it takes me back to what you suffered.You know where I am though hun and if you just want to chat one day, just say the word.

Happy birthday

It had been 2 days since the MRI...the results were in but as the doctor in charge had gone home no one could tell me them. I was utter frustrated and tormented.

My birthday was on the 3rd of February. I told the doctors I didnt want to know the results on that day...I dont think I could ever celebrate the day again if I knew that it was the day our lives changed.

My MIL and SIL's all came to help celebrate...Sammi was there and another friend..yet I really didnt feel like it was my birthday. Their ment to be special occasions....happy times not a day filled with sadness and worry. As hard as everyone tried it just didnt help. All I wanted to do was sit next to Mateauz and felt guilty that I was sitting away from him.

After everyone had left for the day I rang Jed. Tears burned my cheeks as I heard my babies sing happy birthday to me over the phone and just longed for their little arms and warm sloppy kisses to enlope me. So you can guess this birthday I aint going ANYWERE!!!!

I trudged up the hall to the elevator, got in and dame it got stuck! Panic set in as I dont do goo din small spaces...breath maz......breath maz.....I pressed the open door and saw that I was between floors...breath maz......breath maz.......just as I was trying to work out what I should do, the doors closed again and the elevator went down to the 1st floor. I never jumped out of an elevator so dame quick in my life and for the rest of my stay there, I never used that dame one again.

I continued to walk frmo that elevator the 4 min walk to 'green' elevators and up to the 4th floor...were I had to press on a buzzer and wait for a nurse to let me in. 2 stood there chatting, watched me press the buzzer and continued to talk without moving. Another lady was standing with me and couldnt believe it......a doctor came up and opened the door for us......and I polietly said to the nurses that it was alright...I didnt expect them to hurt themselves......stupid woman! blah.

I had to wait outside mateauz room as the doctors were doing their night rounds. Parents had to wait outside as the doctors discussed each child andonly the parent of the child was permitted in the room.

My turn......I stood there not knowing what they were going to say when the head Nuro turned to me and said

you sure have one miracle child there

I asked what he had ment...my mouth went dry and I swear my eye's popped otu of my head. He had explained that the clot had not grown any larger but had infact started to deteriorate by itself. He still defently had brain damage but to what extent they did not know other then it being quiet sevier. There was the chanch taht mateauz could be or go blind, that his speech would be affected as most CP kids lose control over their tongue muscles, he more then likely wouldnt walk let alone crawl until the minimal age of 18 month to 2 years.....LALALA it was my birthday....I didnt want to hear this...lalalalal

BUT ****.......No need for the drugs...no need to make THAT decission...i didnt have my childs life in my hands...he was going to live.....he could come home sooner then expected..**** my baby was going to live!!!!!

It would have had to have been the greatest day in my life....dont get my wrong I loved my wedding day and the birth of each of my children but being told your child is going to live after what he had been through was everything and nothing.

I rang Jed again...bawling....he thought the worst straight away fo course...hearing a looney wife on the phone not being able to get the words out due to a release of stress and frustration....I think we just both ended up crying on the phone together for 10 mins. Although Jed was over 200km away...it was a closeness to him that I had never felt.

Our great news soon turned sour for me the next day. It was something that I didnt tell a sole...until Mateauz turn 3 months old. I couldnt take away the happiness that Jed was feeling and the chanch that we could be happy for a bit.

The clot was quiet large and was breaking up by itself. There was a chanch that a large bit could break off and still cause damage deeper in the brain. It particals would still be floating around until the body disposed of them naturally but there was still that chanch that this could happen again.....the doctor said that when Mateauz reached 3 months that we'd be able to breath easier as the clot should have been totally disinigrated by then. I know...its easy to say I should have told someone...I just couldnt. those who know me well, know I am shocking at keeping secrets...but this is just one thing I couldnt share....I just couldnt stress the people I loved anymore so it was just easier to keep it hush and I made sure the doctor never mouthed a word of it.

We had been given the all clear to go home...... my baby was coming home. He was still sick...still blue and small but he was coming home were I could take care of him and make him better. More research...interesting..I found some new age research that suggested that honey had blood healing qualities to it...hmmmmmm

I rang Jed...

What are you doing tomorrow honey...fancy driving to Melbourne????

jed had told the kids that they were going to buy something special. He rang me as they reached the car aprk. They had no idea. I stood there...bawling my eyes out, watching my boys looking around at traffic...then Wilhelm seen me and his eyes lite up

there's my MUMMY

Nikolaus caught my eye and started crying as he ran for me. I never wanted to let them go. I couldnt stop crying and kissing them. My baby girl looked at me with bewildered eyes.....she was scared...had I become a stranger to her...oh no..i had gained my baby boy back and lost the connection my daughter and I had. I tried to hug her but she cried and lunged for her daddy. I was so upset but so excited to finally have them there. Finally my darling husband scoped me up and planted the biggst kiss and hug on me that it gave me butterflies and made me feel like I was home. God how I had missed his arms around me and the smell of him...even his grizzly adams beard.

Now I had to reintroduce my children to each other again...and start along process of physio and appointments............

Why did I have to drink 3 glasses of wine before reading that!

Mateauz is definitely a fighter. He may have been a small baby, but he was, and still is, a strong baby.

You've been to absolute hell and back maz. And now you have the chance to talk about it. Good on you.

I made it to the last paragraph that time before I lost it. At least Im at home not at work. I really dont know how you do it Maz.

Maz, you are one extraordinary woman, will keep reading xxxx

The description of being re-united with your kids and hubby is one of the most beautiful things I've read in a long time. You should be so proud of yourself and the incredibly difficult journey you and your family have been on.

I can't stop reading.

I saved this thread till I could have a drinky poo with it......xoxoxoxo

*breath* just *breath*

i have no words yet.. im sweating and crying and feel physically ill...
Geez i love that little man xoxo