Ryan continues to attend Day Clinic twice a week to be reviewed by a doctor, have his weight checked and routine blood tests. This week the plan is to try and reduce the steroid that was prescribed to stop his high temperatures. It was originally 20mg twice a day and this week we are down to 7.5mg twice a day so it's a case of monitoring his temperature to see what happens. If his temperature goes above 38.0 we have to take him into hospital so that bloods can be taken and he can be seen by a doctor - as annoying as this is to us it is not safe to assume that a rise in temperature is purely down to the reduction in steroid as Ryan is obviously very susceptible to infection at the moment. We discussed this with the doctor and he said that providing his blood tests did not show any infection and his infection/inflammation marker was not raised then we could simply increase the steroid and try to reduce it again the following week.
Since the last update we have taken Ryan to a dry toboggan run for half an hour - he had great fun zooming down the run screaming to his Dad to go faster and 'don't brake!' - good to see that he hasn't lost his davedevil streak! He even had a go with me and said 'Mum you weren't as fast as Dad but you did great' - high praise for me then!