Hi everyone, Just wanted to say hello and i've been reading all of your posts and i think all of you are such strong mums and dads for everything that you are going and have gone through!

My little boy Cooper was born with a lot of different "complications" and i thought it would be good to write my story here too, as reading your stories has helped me, i found myself saying "yes i know exactly what you mean" and "i felt like that too" as i read through a lot of posts about development delays and cerebal palsy and about being in hospitals all the time, hopefully this will help other mums to feel like they too can get through.

Cooper is 10 months old born 10 April 2006, he was born with a keffel Haematoma (spelling?) on the back of his head, meaning basically a Very swollen head that was holding a lot of fluid, after a very traumatic birth he was taken away and put in the special care nursey as they didnt know what was wrong with him, they came in and said to me "its ok we dont think he has down syndrome", i didnt know what was going on my heart broke and all the new baby excitement just drained from my body, anything being wrong with him was so unexpected as i already have a 3 year old and had a very non eventful pregnancy.

After about 2 mths and a lot of scans the swelling went down and revealed a very bumpy lumpy narrow skull shape and a very prominent forehead, the haematoma calcified (turned to bone) and more scans revealed he had severe saggital craniosynostosis.

He also has hypertelorism (widely spaced eyes), a turned eye with a very stringy muscle, (he wears glasses), very weak neck and arm muscles, a split nose, tight rigid hips, bad reflux with aspiration and the peadeatrician says he may have a very mild case of cerebal palsy.

The genetisists would love to categorise him and put a name to his "conditon" or "syndrome" because it is more than just craniostenosis, but after genetic screening and chromosone tests, they still cant as all the tests came back normal.

Cooper has been going to an early start program since he was about 4mths old, there he sees a team of a physio, OT and a speech therapist (helped with feeding, and will help with speech much later), they give us exercises to help strengthen his muscles and have helped a lot with Coopers development. They see him once a month.

Cooper has been in hospital a lot in his first 10 months of life and there will be a lot more visits in the near future. One night he stopped breathing, and was rushed to hospital where they worked out he had reflux and had aspirated, it was the scariest thing i have ever been through to see him white and non responsive (next to my 3 year old having a febrile convulsion). He has had 2 anesthetics for an MRI and CT, I was beside myself and they werent even operating, i cant imagine what i am going to be like when they do his cranio vault remodelling (major operation to re-shape his skull so the brain can grow) on the 24th May. He will be in intensive care for a couple of days then stay on a ward for a while.

Cooper is about to have surgery on his eye to straighten it as the muscle is too stringy to turn it with patching or glasses, they have to operate on all 4 muscles in his left eye, that is coming up on the 28th of this month.

He is doing well and is proving some doctors wrong who thought he may not be able to lift his head as he has just started sitting up and from his tummy can now hold his head up and is trying to get his legs under him to crawl!

I praise the craniofacial clinic team of doctors at Sydney childrens hospital (where we are a lot of the time) they are fantastic and i trust them completely! and his paedatrician in Port Macquarie where we live, he is amazing and always on top of things and the early start team up here as well!

I am going to put regular posts up here to reply to anyone or just to update Coopers progress. Thankyou to anyone who read my story!

Sarah 23 & Brad 30
Maddison 3yrs BEST SISTER IN THE WORLD!!! so loving and caring!
Cooper 10 months