What a last few days it has been - both Julie and I are exhausted, were both have some coldy flu runny nose cough etc - I had Wednesday off work and went back Thursday but still far from 100%, Wednesday night Elijah - woke @ 11pm - managed to extricate himself from his sleeping bag suit and had weed everywhere wand so I the problem was that he has ripped the stitching off the other sleeping bag we put him int. We had bought it and had the zip removed because he was managing to get it undone.) It is now a small zip at the bottom) and this was completely stitched up the side and he ripped the stitching completely down the seam. I first started to stitch it up with cotton and this keep breaking as I was trying to do it tight as I could (by hand @ 12 by this stage) then do you think he would settle into the washing machine with the sleeping bag and sheet, gave him some more Melatonin, and thought he was secure, 60 minutes later (now-about 1:50) more crying found I think that I forgot to safety pin the zip and would you believe it he still had wee in him and so another wee a small one at least, you know what I did I changed his nappy and got out the hair dryer and dried off the sheet in the cot and the sleeping bag without taking him out, he sound it quite amusing - I was not by this point in time. left him, 30 minutes later - more crying and he has managed to jam his arm into the sleeping back how he managed that I'll never know there was barely room to get his arm in the armhole - ah well his feats are mostly impossible - extricated his arm and more Melatonin - well didn't have anything else and I left him heard the last of him about 2;45. what a night.

Thursday was a reasonable day, during the but with Elijah woke again @ about 1:30am and then was awake @ 6 am . It's almost daily been a battle keeping him both in his sleeping attire and I have to confess that safety pins are not quite what they used to be mind you Elijah is pretty strong and I fear this strength will only increase. We are hoping however that he may soon grow out his need to constantly try to get his nappy of especially via wriggling and contortion, I never cease to be amazed at how he can get his nappy of and then want to leave deposits around the house as well.

Both Julie and I have been unwell with coldy fluey stuff and so it means that we have even less energy to keep up with him and of course many other folks with AS kids will know our kids can take some keeping up with. Julie called me this morning (Saturday) low and behold our wee man was awake and it was 2:15am. Another change of nappy a top up of Melatonin and he slept until 6:25 when I got up to give him some toys to play with. I was happy that when I went back to him and hour later he was secure -whew.

We have had some plans for a bed arrive from the USA and I have yet to talk to the husband of my former manager at work who is going to look at them and see if we can build this bed for Elijah. Here's hoping we may feel a bit better in the next day or so (Monday is a holiday here in New Zealand) so we can drop the plans off and hopefully visit a couple of other families locally who have children with Angelman Syndrome.

I guess the reality that everyday will have it's unique challenges with Elijah is settling in my mind and in reality I think these challenges will change rather than go away. I am consoled by the fact that Elijah never looses his sense of humour even at 2:30 or 3 in the morning. The challenge for us is working on strategies and practical options that make these easier for him but also for us as a family.

One never got burnt looking on the bright side of life.

Peace be to you and yours - Darren

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 (http://www.angelmanforum.org/ ) 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 http://www.seacoastonline.com/2005news/exeter/09232005/news/64442.htm
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