So the chickenpox vaccination didn't work...Ross was an angry boy for several days last week. It was almost like he was back before Christmas when he couldn't really be pacified. The spots appeared on Tuesday and are still looking pretty horrid a week later. He seemed to get back to himself a bit by the weekend which was good as it was a scorcher and we prioritised exploring the local area over doing the jobs I've been putting off doing in the house.
We also saw the paediatrician on last week - she seemed pleased with how Ross was physically, despite the chickenpox, and especially on how much more subtle his limbs were compared to a few months ago. This is all down to Clair who does most of the daily massage sessions with Ross, and the excellent therapists he sees every week now. She also had the results of the EEG scan of his brain activity which was done a few weeks ago. It still shows pretty erratic activity, bgut she seemed to think it was focussed on one side. We'll be taking Ross for an MRI scan some time soon to see if there is something physical which could be the source of the problems. The other news from that appointment is that we have started to reduce the amount of steroids which Ross gets, and the plan is to reduce by a little more each week until hopefully he's off them completely. It's only by a small amount at a time and at this rate it could be into next year before he's off them completely, but we're happy to go very slowly as the risk is that the seizures return, and this risk is higher if you make major changes to the medication. It's all wait and see now - needless to say we're hoping he stays seizure-free...
Went for a longer run on Saturday (in the sunshine) and felt really good at the end - impressing Clair with my sprint down the homeward stretch. Starting to think about the list of kit I need to take to the Alps. We've got our transport booked and are staying in a cheap (and hopefully cheerful) hotel in Chamonix. Also got 2 nights booked in the Cosmique Refuge hut up on Mont Blanc so I think we're getting there...
Thanks to some late big money donations, we're now only £270 short of our target for the NSE. If you think any of your friends or family would like to donate, please pass-on the website details to them to help us close the gap!
Monday, 1 June 2009
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