Friday, December 29, 2006

We went to see my Paedeatric Nuero on the 19th of December and started by talking with one of the registrars updating him on how I have been in the last couple of months in particular the new seizures I had and that I was unwell with the viral throat infection and high temperatures.

We asked if the new types of seizures the tonic clonic and the other one were only likely to occur when Elijah was unwell. The specialist told us that it's not uncommon to experience several different types of seizures and that they would not be limited only to times when Elijah was unwell. We talked about managing the seizures when they occur and they will arrange of the epilepsy nurse from the hospital to meet with us in the new year to discuss the use of diazepam to be administered rectally in the case of long seizures. The Specialist has decided to reduce the clanonzepam that Elijah has been on and to increase the Epilim to 5ml twice a day to help deal with the seizures. So far so good although I am writing this retrospectively.

Since starting to write this Elijah is now had a couple of breakthrough drop seizures and so hi Epilim has been increased to 7ml per day. So far so good no more seizures to speak of and so things are generally going well.

Thursday, December 28, 2006

Well so many things have been happening my Dad has struggled to remember to keep my blo updated and so I think he will have to break it down into several entries.

Let's call the first one - THE PICNIC
I am happy that the weather held out for the Angelman Support Group Pre Christmas picnic - wow there were 6 families there and I got to meet a couple of friends I know Daniel Tobias and Ella, but I also got to meet two Charlottes - and my mum and dad and sister got to meet their parents and brothers and sisters too. It was great and I spared no time getting to know some of the other people and hugging them and climbing on them as you can see. The Picnic was at Spencer Park in Christchurch.

We all had a great time and will be getting together again in January for some more fun.

Me playing in the sandpit

Brent & Me

Me climbing on Trevor

Tobias and Markus Me and Mummy

Trish and me eating some yoghurt

Monday, December 11, 2006

I have been having a happy time, as always, I now have had someone to look after me each week when mum takes Francesca swimming . Her name is Alicia. As you can see we have lots of fun together.

Alicia has worked with other children like me and she is quite a funny lady. I am looking forward to her looking after me.

This past weekend my Grandad and Novina came to visit and so it was fun to climb all over them cause i haven't seen then in quite a while.

I am looking forward to the weekend because I am going to a picnic in Spencer Park with other famlies who have children with angelman syndrome

To be updated.