Xavier was born 7½ weeks early on the 2nd of September 1999. He weighed 3 pounds and 13 ounces. He was tiny. Just after he was born he developed a pneumothorax (a punctured lung). They had to put Xavier on a respirator to make sure he was getting enough oxygen. After just a few hours Xavier pulled the tubes out and the doctors decided not to put them back in because it was so traumatic the first time. They decided to just monitor him and see what happened.
Xavier was fighting from that time on. Every little step forward was a challenge. He did come home before his due date, but he was always behind the eight ball. He was always tiny, smaller that all the other children and when he was born I wasn’t told that there was any possibility of cerebral palsy or developmental delay for that matter. I thought everything would be fine. I was told that he was going to take a little longer to do things because he was born prematurely.
When he was about 8 months old I started to get concerned. He wasn’t hitting any of his milestones. He would lie on the floor on his back and not do much more
Xavier has a prognosis of Developmental Global Delay Cerebral Palsy. For Xavier it means he relies on other people to assist him in all aspects of his life. He needs help to eat, to drink, to dress, to brush his teeth to comb his hair, to bath, to go to the toilet, to get into bed to get out of bed, to get into his walking frame, to get into his wheelchair, to go to school and to be able to be part of our everyday world.
He is a beautiful boy that needs lots of help. He is unable to use speech and relies on Augmentative and Alternative Communication (AAC) to communicate. He has a Pragmatic Organisational Dynamic Display (PODD). Xavier is currently learning to use and develop his skills with a Dynavox Maestro speech generating device. He is able to communicate a variety of messages such as commenting, requesting, relating information, telling jokes. He is cheeky and his laugh and smile are really infectious.
We hope that this site, will help keep his many friends up to date with his progress and the milestones that he achieves making us the proudest parents in the world.
Christel & Tony