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. WECraniofacial 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
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