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Thread: Not sure where to start, but want to share...warning this is a long one

  1. #1

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    Default Not sure where to start, but want to share...warning this is a long one

    Hi everyone,

    This is my first post on belly belly but I have been an avid reader for a long time.

    I have wanted to share my "story" for a long time, but in addition to it being a little bit of a sore point for me, (i think im a bit traumatised) i don't know where to start, what to include, how far to go back and i don't want to blab on, however i do want to talk about it and maybe someone out there has been through similar and can blab on with me..... Sorry if i start raving and cant stop.

    My son Cooper, now 4, was born with multiple disabilities, he has had lots of surgery, lots of hospital stays, lots of close calls and a few stints in intensive care.

    My pregnancy was completely normal and nothing was detected until he was born, my traumatic birth is another story which probably shouldnt be written here.

    * Firstly he was diagnosed with the bone condition craniostenosis, this is where the sutures (joins) in your babys skull fuse too early, its hard to explain but normally involves one or two sutures, which is commonly fixed by a single operation performed by a plastic surgeon..

    With cooper it happened to all his sutures and the bone was so deformed it was squashing his brain, he had to have 2 separate skull surgeries, where they literally took his skull apart, reshaped it and put it back together. The surgeon called it "mecano for big boys".

    He had blood transfusions and stayed in intensive care for a bit. It was on saving kids on channel 10 for anyone who watched that show! Amazing surgery to watch, but in saying that it has been 3 years and i still have only watched it once and that was through my fingers. This was when Cooper was only 1yr.

    Coop has been seeing craniofacial clinic at Sydney Childrens Hospital Randwick since he was about 6 months old. WE Craniofacial clinic! Does anyone else go to this clinic? we see all the doctors there, plastic surgeons, neurosurgeons, neurologists, eye surgeons, ear, nose and throat specialists, genetic specialist, dentists.. They are wonderful and this is via our public health system it is a fantastic clinic and they are the best of the best doctors, I dont know where we would be without them!

    On top of all this happy Cooper the trooper has

    mild hearing loss but apparently adequate hearing for development (still has a hearing aid)

    vision impairment, (glasses are a constant battle)

    sleep aponea (has had tonsils and adenoids removed) now will possibly be needing c-pap

    laryngomalacia and chokes consistently (4 years and is still on mush)

    no speech but we are getting there with the signing!!!

    has had multiple amazing eye surgeries where they took muscle from part of the eye and put it in another part of the eye (amazing)

    3 lots of gromits

    genetic and chromosone testing always come back normal so cooper is (as im sure many parents have heard before) in "his own little box"

    Still in nappies ..... Help!

    but walking and running (after lots of physio) and always laughing! seriously the happiest kid i have ever met.

    I also have a wonderful 7 year old daughter who loves her "special" brother to peices AND i must be crazy but I'm pregnant again! very excited but soooooooooooo scared.

    Cooper has more surgery coming up this year, hopefully my pregnant emotional body can deal with it! Women and kids are very resilient

    There is my essay... my mum has been bugging me to join a forum with people in similar situations for ages, but it is only now that i am pregnant again, that i feel like talking about it...Weird. I always go to post on other peoples threads about delays and other stuff but felt i should Introduce cooper first. Done. and it wasnt that bad. But now i am ranting, knew that would happen.

    If anyone has had any of these issues, surgeries, delays, early intervention, etc. I would love to hear someone else ranting


  2. #2

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    Welcome to BB Sarah. Thanks for introducing us to your happy little man.

  3. #3

    Join Date
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    I saw him on TV!!! I cried and cried, I can't even begin to imagine what it was like to live it.
    I have taught children with hearing impairment, the dept in NSW provides support teachers to help as well and the school I taught at in NT had a hearing impaired unit in the school. I currently have a ASD boy in my class.
    Is your little man having early Intervention? We have a unit at school, there would prob be something up your way.

    I read this back and realise I look like I am rushing in offering advice- sorry don't mean too

    What I want to say is welcome to BB and congrats on your pg.

  4. #4

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    Congratulations on your pregnancy! Thanks for introducing yourself and sharing Cooper's story. I look forward to seeing you around BB.

  5. #5

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    Thanks for sharing Coopers story, I actually remember seeing it on TV and being amazed and inspired by your strength and courage. Cooper really is blessed to have such an amazing mum. Anyway, just wanted to say welcome to BB.

  6. #6

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    Welcome, Sarah.
    Wow, what a lot you are working through.
    Good luck and congrats on this pregnancy

  7. #7

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    Quote Originally Posted by littlelara View Post
    Welcome, Sarah.
    Wow, what a lot you are working through.
    Good luck and congrats on this pregnancy
    ^^ yeah that!!!
    welcome to bb huni and i look forward to getting to know you and huge congrats on the pregnancy xox

  8. #8

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    Thanks so much for reading my thread and all the warm welcomes guys!

    I nearly cried when i read some of you remembered seeing him on tv!

    I am totally open to any advice and suggestions so thankyou and dont at all think it is not wanted!

    Coop has been at early intervention since he was one and it has been fantastic, physio, speech, OT's, seminars, everything you need and great resources.

    He is going to Port Primary next year where he will attend the support unit, it will basically be like he is having early intervention every day, so that will be good for him i think. I am a bit nervous about sending him to school as he is a bit young, but the teachers assure me it will be better for him than pre-school another year. It sounds good, they are integrated with the other kids at recess, lunch and assembly and any other school events... He is a very social little butterfly. Plus they cater to feeding and toileting needs that he has.

    AFM, (learning the lingo) I just joined the belly buddies group, what a dag hehe

    Night all and thanks again
    Last edited by SarahS; July 26th, 2010 at 10:22 PM. Reason: extra information added...

  9. #9

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    My goodness. I've got goose bumps and I do remember you and Cooper. Welcome and congrates on your new pregnancy. I am sure you will find a lot of support here

  10. #10

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    Welcome!
    Big congrats on your pregnancy,
    your little boy sounds incredibly special, and he is so lucky to have such a strong mama.
    you must be very proud of him xoxo

  11. #11

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    Welcome to BB hun!
    What a delightful positive little boy sounds like you have Xoxoxoxo
    Congratuations on your pregnancy... Look forward to chattin with your a little more ;-)

  12. #12

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    OMG! I REMEMBER THAT STORY! What a brave little man you have!

    Welcome to BB and see you around the threads!

    I forgot to add. Congratulations on your pregnancy! You're not crazy at all, just human

  13. #13

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    Congrats Sarah,
    Cooper will benifit from starting school and it will help you out as well with a new bubba on the way.

    I dont know if this will help but -
    The theory I try to take with my daughter (physical, intellectual disability as well as autistic tendencies and sensory integration disorder) is to provide every opportunity possible.

    I noticed toileting is an problem.
    My daughter was in nappies full time until she was 15yrs old. Now she is night time only (just turned 16). I started with toilet timing - sit on the toilet every two hours for 5-10 minutes, dont worry if you dont get results straight away. Be consistent and persistent! once he gets the idea (and when you are confident enough) take him out of nappies for a couple of days and see what happens.
    I tried every school holidays for about 12 months and then something clicked. Now my daughter cries if she has an accident. She has limited to no communication but we toilet every two hours without fail, usually she will do a wee but sometimes she holds on until the next toilet time. We still get the occaisonal accident but she has been mostly dry for 12 months.

    I was always told "She will be in nappies for ever" but with persistence and consistency (and the financial push) we have done it. I wish we started earlier.

    It sounds like you have a very special brave boy. Good luck with everything.

    Sjl

  14. #14

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    Thanks for the support

    SJL - that sounds like a good idea, he likes sitting on the toilet, i have heard some other mums too say they did an intensive weekend of on the toilet every 20 mins, that sounds hectic and i dont think coop would respond to that i think it would make him hate the toilet, but the way you have said sounds do-able!

    I have been waiting til summer too when its warmer and he can run around with no nappy on and i can catch him when he starts maybe and put him on the toilet? Nappies are so expensive aren't they!

    That's great that with your persistence, your daughter is out of nappies, i bet it did wonders for her confidence! Does she sign at all?

    We are not sure why Cooper cant speak, they say his hearing is not that bad and especially with the hearing aid. but i guess its just another unknown, he only makes one noise and that is a monkey noise hehe sometimes soft and low pitched and sometimes ear piercingly loud and high pitched, at the supermarket its pretty funny, me and my daughter laugh to ourselves and call him our little monkey!

  15. #15

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    Sarah welcome to BB. Thanks for sharing a bit of your story with us. Cooper sounds like a lovely little shining light I'm sure you'll find support amongst the parents here - especially those of us who have children with special needs and disabilities. It sounds like your story will also be a help to other parents, who are coming to terms with the challenges and joys of parenting children who dance outside the straight lines of life. Welcome.

  16. #16

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    children who dance outside the straight lines of life.

    What a great way of putting it MistyFying!

  17. #17

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    Thank you so much for sharing the story of your gorgeous little man!!! Can't wait to read more about him and you. Welcome to BB.

  18. #18

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    welcome to the BB community, m'dear! you sound like one tough mumma.. you'll fit right in

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