17th February 2011

Hiya,
a rough few days. Generally speaking Steven has been calm, and has slept well at night. However there have been some disturbing features, all of which are, too us, big backward steps. Steven has been very delusional, whether this is caused by his medication, which is constantly being changed, of whether it's his awareness of what's going on, but it does show the fight between the 26 year old body and the 5 year old child within it. In no particluar order, he has said that he can feel a tube moving in his head, and he rubs his head where the probe was inserted at Benidorm; One night, he said that his feet were on fire, and I was to call an ambulance, and also a nurse to come with some ice for his feet; He says that the nurses aren't really nurses but are strangers changing him in the middle of Carrefour (A Spanish multi-store like Tesco); He wants his new black trousers to wear for his first day at school and to see the headmistress; He thinks he is in a hotel, and wants us to pack his things and go home. A lot of this is accompanied by real crying episodes of despair, and to see that in who was once a fit young man is heartbreaking. It doesn't matter how much we hug him or talk to him, he's inconsoleable. His worst episode was on Wednesday afternoon when he just refused to go to physio'. He was crying loudly, so much so that the nurses tried to calm him down, but it didn't work. He cried and fought all the way to the lift and held his arms out in attempt to stop me pushing him into the lift. He was in this state for at least 25mins, until the physio' staff started him working. All of this doesn't do any of us any good, and we wonder how much more of this we can take. We too cry every day. But we are heartened by friends messages and the obvious evidence of improvement of others.
His feet injuries have almost healed and all dressings except small plasters have been removed. He is visibly putting on weight. His skin is in good condition, helped by the copious amounts of Nivea cream he has rubbed on every day in his massages. His right arm, which has been injected with botox to relax his muscles is now so relaxed he cannot use it to spell messages on his alphabet, we have been told this is temporary. His left arm is still giving problems due to excessive growths on the joints due to inactivity. His speech is becoming more mumbled, so conversation sometimes proves difficult.
He brightened a little when he finally received his Valentines Card from Veronica, and we brought home from shopping a leaflet about new mobile telephones, something Steven knows a lot about. He is now in the process of advising Paul of which 'phone to buy.
best regards
Terry