Wednesday saw Elijah have several clusters of seizure in the afternoon well about 30 in a 3 hours period. Not sure what brought them on - he went to sleep early and slept pretty much through the night and nothing out of the ordinary today. We will just need to keep an eye on him. Julie is also still keen to get his ammonia levels tested the Specialist has refused once but we can always ask again. And I will try and contact him tomorrow being Friday, Although I have to confess this is always a challenge.
The exciting new of the week is that the we - the Christchurch Angelman Support Group have gone online @ www.angelmansyndrome.org.nz the hosting of the site is being sponsored along with the domain name registration as well. This is a great opportunity for us be in cyberspace and link with other families in New Zealand and also internationally.
Next week we have a meeting of the support group and will be watching a presentation about the genetics of Angelman Syndrome from the AngelmanNZ conference earlier in the year.
Until next time
About Me
- Elijah
- Christchurch, New Zealand
- Elijah had Angelman Syndrome. He lived in Christchurch New Zealand with his Mum, Dad and his sister Francesca. Elijah was returned to the Lord on 13 August 2007. This is his journey and our journey through the eyes of his Father - Darren
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