almost two weeks ago Julie and I were able to attend the first Angelman New Zealand conference - held in Hamilton (which is in the North Island) some folks from the Christian Community we are part of got together and and gave us $1000.00 which was able to cover our airfares and registration for the conference. to be continued..

There were 40 people registered for the conference and 7 or 8 were professional people, teachers and other staff who care for children with Angelman Syndrome, the rest were parents or family members. There were 19 children and of those 10 of the Children has AS and were of a variety of ages. The Friday night was a relaxed time after the drive down to meet folk and relax. Well probably like every one else we immediately felt at home a bit like meeting the extended family. The great thing was that there was representation of 4 families from Christchurch.

There were 3 main presentations - one by Dr Elle Smith who is a geneticist from the Angelman Syndrome Clinic in New South Wales in Australia who gave a most excellent presentation about the genetics of AS complete with Powerpoint presentation - I was able to get most of this on video, this was just great. Julie had a couple of questions to ask one ws about her opinion of a mouse model that reduced the impact and symptoms of AS and she responded by saying that she was not aware of it at this point in time and suggested that perhaps we were up with things happening internationally more than she was. This was something that we found to be true with discusssions with other folk - we are reading and researching on a daily basis to gain a better understanding about whta is goin on in Elijah's body and the effects of AS on his brain and development.

To be continued.

well the week has shot by - it was last sunday morning shortly after 5am that both Julie and I woke with the bang of something from Elijah's room and so I leapt from the bed and in his boor to find him flat on his back and beginning to cry. This was followed by some significant seizures drop seizures, absence and general. About 50-60 through from 5:30 to 7:30. I rang the hospital at 7:15 for some advise and the Doctor suggested bringing him in as soon as possible and so I put him in the car and went as quick as a could into the hospital I was there in less than 15 minutes and took the Roman law approach when it came to the stop lights. We went straight through to the Children's Acute assessment where they were waiting for us. The put an IV in and game him diazepam to stop the seizures. This was quite a challenge as he is both strong and active and wasn't that ready to have a needle in his hand and so there was lots of tape. The diazepam took almost and immediate effect and he was pretty drowsy. The doctor told me that because of the number of seizures they may have just been set off by the hit to his head or if they continued it could be as a result of a brain trauma. To be continued.......
20/03/07
After several hours Elijah still continued to have some small seizures and so they did a CT Scan which thankfully showed everything to be normal - they told us we should watch him over the next 24-48 hours to make sure he was ok. So we were much relived and so are in the process of looking for a more secure bed as well...