 BiPap and humidifier: To exercise his lungs, tilted a little for short times to allow drainage hence why cushion under neath and propping him and his back this would be done approx every 10 mins changing position. |  New York Ronald MacDonald House lucky to have had the Doctors in the Hospital Downtown give him a Hip Brace as well as go through all tests including educational advice and testing for a computer it was so advanced. |
 He needed braces on his feet as growing up and not moving his legs or feet if he didn't have the brace his feet legs arms and hands would stay fixed. Physio therapy to exercise his limbs was an important part of every day doing this several times. |  Just having had his hair cut - lying down so much in summer or in any humidity would cause him to sweat and potentially give sores - he loved being the centre of attention and have the spotlight so would entertain other clients. |
 Travelling to the New York, Paris, Nice - France, Switzerland, this would be the minimum of what I would travel with for him quite a lot of times and later as he grew I would have his feed in bottles and feeding equipment - tubes and other devices. |  Even though he was still young and I didn't know how long he would live I knew it would be tough as a child. I didn't want him to have a complex so early on also for me to talk to him I started going through newspapers to talk about things happening. I knew somewhere inside that information and knowledge would be his limbs and his power. It was also a way to have a connection as we were together all the time and I didn't want either of us to be limited by his condition I wanted us to go beyond in what little way I could give him by opening up the world this way. |
