Monday, October 30, 2006

I am happy to report that life is attempting some degree of normality. In the most Elijah is now happily sleeping through the night on his lowish dose of melatonin. He has had a couple of night - like last Friday where he work about 10:45 and I last heard him about 1:30am. The reason I didn't hear him anytime past then is that I fell asleep on the couch. Elijah had stopped making noise by the time I woke up or was woken up by other members of the household stirring.

I have to confess that since then I could myself over the weekend getting out of bed to go to Elijah and realised that when my feet hit the floor that I was dreaming, but was getting out of bed in real life - figure that one out. I stopped and listened and in reality there was not noise and so back to sleep. It has taken some getting used to having a full nights sleep - as it's been so long and I know there are folks who will read this email and nod theire heads. There will be others who will be eternally grateful to the Lord, who allowed them access to melatonin and hence preserved their sanity. "It's life Jim but not as we know it." This sleep for Elijah has also meant that along with the meds his seizures are well and truly under control.

I am also happy to report that there are now 8 families in Christchurch with children with Angelman syndrom including a man who has travelled half way around the world from Germany with his family. I met this friend when he wa visting Christchurch - he got my contact details from and sent me an email - we we able to have some good time togther sharing about Angelman Syndrome as his son who was back in Germany had recently been diagnosed. We hope to have a get together of parents later this month and maybe a gathering with kids before the end of the year.

Well until next time - health to your enemies enemies and peace be upon you and yours
Father to Elijah - Angelman Syndrome Del + New Zealand

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