Thursday, April 05, 2007

Well happy April 2007 folks, this last year has flown as it is coming up to one whole year since Elijah was diagnosed with Angelman Syndrome. What a year it's been for us! a year of grief, challenge, some steep learning curves, lots of joy, heaps of hope. We Julie and I are finding our selves needing to continually educate ourselves about Angelman Syndrome, genetics, neurology seizures related matters. There is just so much to learn, and take in and understand and also to act as a catalyst to help educate others. The Listserv for angleman syndrome and the angelman forum ( ) have helped us a long way in this. We have found ourselves in dialog and discussion from folks across the globe and better able to dialog with Elijah's medical specialists. Still along way to go, but blessed by every minute of it, even the tough ones and there are plenty of them to go around.

NEWS - A new car seat is on order and will be here in 5 weeks - Elijah is too big for the one he has been using - was originally his sister Francesca - this one is being obtained through his Early intervention team - is more difficult for him to houdinise. Also a walker to help Elijah and a new buggy - with him in mind (cause he is getting quite heavy now) and a high chair that is better suited to his needs - again so that he can not houdinise it.

Bed - well we have just taken deliver of some plans for a bed generrously supplied by Walter Smyth who lives in Exeter - NH - he designed and built the bed for Nicholas Swanton - see the following link
he has generously sent us the plans and we have a contact in a local technical institute who is a tutor of building and carpentry who is going to look at the plans and see if they would make it for Elijah - this could be at no cost to ourselves. Wooohoooo wouldn't that be great - must fly

until next time - take care Darren

No comments: