Saturday 9th December 2006

Well ... 8th December came and went and WE SURVIVED! That date has had such a huge significance for me (us I think) this past few weeks, since we heard the doctors were testing Lew for battens disease, and now its gone and past and we're all still in one piece because ... Lew has tested negative for battens, phew !!!!! We are now awaiting results from a gene test for dystonia, and we are seeing the metabolist on 19th December who will be wanting to test for creatine deficiency and mitochondrial disease. These will require bloods so Lew will have these when he has his next MRI early next year. So for now we can relax and enjoy Christmas and hope that Lew doesnt have any more major epileptic type seizures. He's been continuing to have very mild ones (conscious) in the night so either James or myself has gone up and laid with him in bed to comfort him while they are going on and of course to monitor if they worsen and we need to give Lew his medicine. We have been prescribed a new medicine called something I cant remember ... keppras I think. We start it on Monday. It should (if it works) have a major impact on Lew's twitching ... fingers crossed! Its a sad day for us as well though ... because Aunty Nicola, cousin Evie and nanny have all gone home today. They have spent the past week with us and its been so fab. Aunty Nicola has been cooking fantastic meals every night out of my very paltry cupboard (she is a magician I am sure!) and Evie is the most wonderful little girl you could ever ever meet and we love her to absolute pieces! Lew has had a wonderful time spending time with his nanny. We were very sad to see them all go. But they will be back early next year for another visit, hooray! Thank you to Uncle Jason for our lovely christmas card and for Lew's and Samuel's presents which they will be VERY excited to open on Christmas Day! So today we are going to test drive a car (mazda 5) and thats about it! We decided to go out last night, as a christmas meal out for the neighbourhood bunch of friends had been arranged for months but we really didnt think we'd be going, whatever the results were yesterday at the hospital, but we felt so elated (that is the right word I think!) that we decided we really needed to share our happiness with our friends and neighbours so we went out for a lovely meal at Balrams and the company was just awesome, totally the best meal out we've had for a loooooooooong time! Thank you to nanny val for babysitting Lew! Sorry we kept you up so late! I had a lovely lay in this morning ... not through hangover as I had only a couple of glasses of wine - cant let go completely as Lew still might need us to be responsible parents in the middle of the night!! - but because I was finally able to sleep and relax for the first time in a few weeks! Oh and Friday night, oh it was the best .... my sister Nicola plucked my eyebrows (she used to be a beautician) and it was the most relaxing thing I've had done for ages and I said to her she could pluck out all my eyebrows and I wouldnt care because it was just so lovely to feel so relaxed and totally un-stressed for a few minutes! It was wonderful to see Samuel after a week away, we had the most scrumptious cuddle! And I hope so much that he was good for Aunty Tania! Thank you Tania, Nathan, Daisy and Millie for looking after him this week! I hope you gave him plenty of school work to do! So I must make sure I book Denise and I in for that back massage at Bliss! Well, must go and get dressed and such like! Lots of love to everybody, we're having a very loving day!!!