Friday, 31 October 2014

1st November 2014

The results from the blood samples were all negative for toxins and infections. We await further instructions regarding further treatment. Steven has continued his exercise regime at the gym, reaping benefits that are obvious to his friends and family. He has had a second application of laser therapy around his tracheotomy scar to remove hairs, and he has to have a third very soon before the operation to disguise it. He is still in pain down his left side, but keeping himself occupied goes some way to alleviate this. He has visited a “foot doctor” who cleared up a few “ulcers” caused by his inability to move his toes in his shoes, and has had moulds made to wear to separate his left toes. (His toes have a habit of curling under each other making walking very difficult). He has been considering having the smallest toes removed due to pain and discomfort, but has been advised against this. Steven will try anything to return to as normal state as possible. To that end, he tried riding a friend’s pedal cycle. He found the experience refreshing, but difficult. Going downhill wasn’t a problem, but pedalling back up a hill created a problem of co-ordination between his right and left leg, basically, his left leg pushed out at an angle creating more pain, especially to his hip. But overall he enjoyed it. So, we purchased a dual pedal/electric cycle. Immediately he could see the benefits of fresh air, independence, and exercise. This gave him a boost of confidence and well being. For three days he did what he wanted, and went where he wanted, not without it’s difficulties, but he coped admirably. Remember this was a worrying time for us, because it was as though he was growing up again, and being sent out into the big wide world on his own. Then one day whilst stationary at a junction, he just lost balance, and fell to his left, his foot trapped in the special shoe on the left pedal. According to Steven it was a slow-motion movement, where he just fell to the floor, landing on his hip and elbow both locations of operations. Fortunately he was only grazed and bruised. People nearby who knew of him, ran to help him, for which he is grateful. Within minutes, a local ‘bus visited that location, the implications of that are obvious. Steven’s confidence was shattered, and he has given up the idea of riding a bicycle. But at least he tried. We look back now to 4 years ago today when we were told his recovery was bleak. Steven and his family and friends have worked incredibly hard to get to where he is today. Those who have followed this journey will understand that. People who saw him in those dark days will understand how proud we are of Steven. He has never once given up without a fight, and I suspect he’ll continue. The biggest problem we have as a family is that sometimes we seem to forget about other people. We don’t do this on purpose, we have so much to think about. Now and again it’s good to be reminded that there are many people far worse off than Steven. There are many families out there who have to cope with similar situations to ours. Those families have their own stories to tell. I just hope that people newly affected will see that there is light at the end of the tunnel in many cases. It takes a lot of dedication and perseverance, and we have been privileged and grateful to come this far.