Tuesday, June 19, 2007


Well it's been a couple of weeks since I last made and entry and this has mainly been because of sickness in the Humphries Family and so less time online to be able to update. It's been everyone who has been unwell including Elijah, this has meant for him and increase in breakthrough seizures culminating in vomiting and lots of seizures and a visit to the hospital. We had added clobezam to Elijah's medication to settle these for him. This has mostly been successful with a few seizures above it but only a few thankfully. We are not due for another appointment with his specials until late in July but we have been keen to try and make this earlier but only in the last day or so have we been able to feel like this is possible. Julie has been blocked up with flu an last Thursday being my 40th birthday none us were well Francesca include and so we had a quiet day together.  We have managed t make contact with two new carers to help us with Elijah, on was able to help us last Friday and the other on Saturday - we were getting pretty worn out and were grateful of the respite and both will be able to help us on an ongoing basis. This is a bonus for us on top of the help we have with Elijah on Mondays and Tuesdays. This has made a tremendous difference for Julie, being able to rest or get out of the house on these days. It's  Francesca's 6th birthday tomorrow - boy don't your kids just grow up so quick - and so my mum is town from Dunedin - she arrived by plane tonight and will be with us for a week. It's a couple of years now since she last saw the children and so it will be good for them to have the time with her. I think she will be really surprised by just how much Elijah has grown and certainly how active he is. My mum has had a couple of strokes and so it's not super active and so it will be interesting to see how she reacts to Elijah wanting to climb on her. We'll see - hope to post some photos of Elijah and his Nan.
The other exciting things is locally the Canterbury Angelman Syndrome support group have gone live on the web and to date in June we have had 118 visits to the site. www.angelmansyndrome.org.nz   I am working with another local to develop it
"I don't ask why anymore - it only leads to despair and consumes emotional energy - what I do know is that special parents are gifted with special kids to share their lives with" - Darren Humphries

Monday, June 04, 2007

This weekend was a holiday weekend here in New Zealand, Queens Birthday weekend, which was a good opportunity to catch up with a few people. We caught up with a couple of other Families with children with Angelman Syndrome. One of the families have a little boy who is a little bit olde r than Elijah and his dad is helping me with the website design, we hadn't caught up with them for a while so it was good to visit and compare notes. Today we visited with another family who have adaughter with Angelman Syndrome. Her mum has helped us by making some night clothes for Elijah. As you know we have had alot of challenges with sleeping and Elijah getting into his nappies and things. She was able to make us an inside suit and an outside bag that we can't get into and so we are hoping for a good night's sleep for both Elijah and ourselves.

Until next time