Monday, October 30, 2006

I am happy to report that life is attempting some degree of normality. In the most Elijah is now happily sleeping through the night on his lowish dose of melatonin. He has had a couple of night - like last Friday where he work about 10:45 and I last heard him about 1:30am. The reason I didn't hear him anytime past then is that I fell asleep on the couch. Elijah had stopped making noise by the time I woke up or was woken up by other members of the household stirring.

I have to confess that since then I could myself over the weekend getting out of bed to go to Elijah and realised that when my feet hit the floor that I was dreaming, but was getting out of bed in real life - figure that one out. I stopped and listened and in reality there was not noise and so back to sleep. It has taken some getting used to having a full nights sleep - as it's been so long and I know there are folks who will read this email and nod theire heads. There will be others who will be eternally grateful to the Lord, who allowed them access to melatonin and hence preserved their sanity. "It's life Jim but not as we know it." This sleep for Elijah has also meant that along with the meds his seizures are well and truly under control.

I am also happy to report that there are now 8 families in Christchurch with children with Angelman syndrom including a man who has travelled half way around the world from Germany with his family. I met this friend when he wa visting Christchurch - he got my contact details from and sent me an email - we we able to have some good time togther sharing about Angelman Syndrome as his son who was back in Germany had recently been diagnosed. We hope to have a get together of parents later this month and maybe a gathering with kids before the end of the year.

Well until next time - health to your enemies enemies and peace be upon you and yours
Father to Elijah - Angelman Syndrome Del + New Zealand

Tuesday, October 17, 2006

I am happy to report that all is going well in the Humphries household. We are up for #6 full nights sleep. I'm the one who is up late tonight trying to keep up with all of the correspondence and business. The small dose of clanonzepam seems to be keepin ghte seizures at bay - thaks be to God. This certainly has been and answer to our prayers and we know that we have bunch of people praying for us and for Elijah during this challenging time and the Lord has been answering. Elijah started some hydrotherapy this past weekend and this went well - we go a to a small local pool - and he majority of people going there have special needs. Elijah had a ball. The picture is of Elijah at the botanical gardens.

Well folks that's all to report today - a short but sweet post.

Father to Elijah - Angelman Syndrome Del + New Zealand

Monday, October 09, 2006

I am happy to report that the weekend was reasonably unevenful - in terms of seizure activity and so we have stayed with a low dosage of clanonzepam this is having it's desired effect I am happy to report this and have been hoping and praying that it would be only shortlived. The sleeping still continues to be cahllengin last night he was awake from 10:30 - 3:30am. I learned tonight of some slow release melatonin and so will have to follow this up. I have just learned of another family in Christchurch who has a boy who has angleman syndrome - this bring our merry band of angels to 6 confirmed. 3 families met late last month and had some time to share and our kids to meet - we will look to meet again in November.

Until next time peace be to you and yours - health to your enemies enemies.

Thursday, October 05, 2006

The Melatoni seems to be working well - apart form the weekend when it seemed like it was only every other night that Elijah was sleeping through, he slept through Sunday, Monday night he woke, Slept Tuesday, Slept Wednesday.

On Monday we though we saw waht was an increase in drop seizure for Elijah, by Tuesday they wer more frequesnt and byt Tuesday afternoon were full on drop seizures, and so we talked with the Dr and she has suggested back onto a low dose of the clonazepam, not as much as we had before, but at least enough to get the seizures under control. We satrted on that yesterday and will continue and see how much difference it makes.

We are glad to have had the protective helmet made for him. We didn't have need to use it initially because it seemed like the drops were under control but now we are having Elijah wear it during his wake hours to protect his head. I took yesterday off work as a mental health day - the lack of sleep and onset of seizure needed some mental time out. Today is a planned day of leave and so will enjoy it. Elijah is not at preschool yesterday and today just until we see a change in the seizure behaviour.

Above is a pic of Elijah with his helmet on

By the grace of God go we - until next time