Professor levene

Well, professor levene came today. He's a lovely man and handily lives just up the road. He was very positive about archsters future. Said he could see no sign of cerebral palsy in his legs therefore would walk. He has diagnosed him with spastic monoplegia due to the increased tone in his right arm. He feels that with regular physio and ot this will improve but never be 'normal'. He diagnosed him with cortical visual impairment which is difficulty making sense of his visual input. His advice was to declutter his environment as much as possible. He also diagnosed him with hemianopia which is no vision in the right side of both eyes. To increase his chance of learning about the world, we are to present items to his left side. He has recommended a gentleman called professor dutton who is based in Glasgow and is an expert in cvi. I googled him and he has written some useful articles. Professor levene feels archster needs to see physio much more often and ot. He also recommends we insist on regular appointments with neurologist dr ferrie. The main aim is to get his epilepsy under control which at present, it is not. He would like to see archster in 2 years to see his progress and make a more accurate prognosis for his future. Hopefully we will win our case and be awarded enough money to pay privately for the best experts in epilepsy, cvi, physio and ot. Here's hoping!!

Difficult day

Today started strangely with a call from neurophysiology department at st Luke's. They need to repeat archsters EEG due to needing more information when he is still. We are booked in on Tuesday at 2.30 for a 2 hour slot. Poor love he hated having it done yesterday and now he has to go through it again. I might shave his hair off in prep although that is going to be a mammoth task/trauma for him in itself. He's had a lot of drop attacks today, holding his breath at the same time. Also twitching right side of his face frequently. He's developed some unusual behaviours which may be seizures including shrugging his shoulders, shivering and pushing his tongue under his bottom lip. I've cried a lot today! Hubby blames last nights red wine but I feel I'm struggling to cope. Archsters getting heavy now and it's becoming more effortful carrying him about. Professor levene is visiting tomorrow for our court case. He's going to assess archster and write a report based on his findings. Worry!!!