Thursday, August 31, 2006

Ah the joys of negotiating with doctors is an interesting experience.

About 5 weeks ago Elijah experienced the very dramatic onset of seizures - both abscence seizures and drop seizures. This culminated in unconsciousness and being rushed to the hospital by ambulance.

I guess as parent you are always aware of the high occurence of seizures in Angels, but nothing really emotionally prepares you for the onset of them. Many people I have spoken to have told me that their first experience has been a dramatic one.

The long and short is that Elijah takes both EPILIM (SODIUM VALPROATE) and also (ritrovil) Clonazepam - both anti convulsants. We were told that the the Epilim would take some time to take effect and so we were also prescribed the Clonazepam. ( Elijah was having about 150-200 seizures a day).

He has now been on both these medications for about 5 weeks and although he is 1 and a half we have noticed him become more fussy and irritable, moody and grumpy and even a little aggresive. I found that this can be one of the side effects from the Clonazepam - our family Dr was not so quick to agreed with us - resulting in some tension - I pushed the matter and the upshot is that we are reducing the clonazepam - and then will stop it by this time next week and we will see if this has any affect - I hope so. I also found that bloody noses and skin rashes can occur with both or more closely associate with Epilim and so will be keeping and eye on that.

Apart from all this drama - Elijah is enjoying life as he always does - until next time

Monday, August 28, 2006

I have to say that I never ceases to amaze me how strong Elijah is growing every day.

I suspected that because he had commando crawled for so long that his upper body would be strong - well as time has gone on it certainly hasn't weakened any and in fact if anthing has got stronger. This poses a challenge when it comes to changing his clothes and when he decides that this is not what 'he' wants to be doing. One of the interesting things that he now does is that in his pyjamas - they are fully zipped up (and now with safety pin on zip) he manages to pull his legs up and somehow swap one leg for the other - and then make noise to say please help me ! His is quite a 'houndini' and on a couple of occasions has manged to spring the safety pin and extracate his bottom half from the pyjamas and well then the nappy goes. thankfully there have not been to many artist effort is the last month of so with the contents of nappies (read diapers)

Elijah is not far off walking - pulling himself up on alot of the funiture. Recently at preschool (that he attends twice a week) he stood up at a table for twenty minutes occupied by playing with some jelly type substances. Everything for Elijah is a a million miles an hour and as soon as your back is turned he has shot off somewhere - will be fun when Elijah is up on hi feet independently.

Until Next time
Friday 25/08/06
As of this week we now know of a total of four families in Christchurch who have children with Angelman Syndrome. We even heard from the Dad of a little boy who was visting the city from overseas who was recently diagnosed with Angelman Syndrome. He didn't know much about it and so we were able spend some time with him. All going well he is planning to bring his family to come and live in Christchurch and so the Host of Angels in Christchurch is continuing to grow.

Julie and I have given our names to the Hospital and also to Epilepsy NZ and a number of other organisations as contacts for people locally or in the South Island.

We are hoping to be able to meet with the other families in the coming month at least on a social level and then see how we can encourage and support one another on the journey with our angels.

This week was bonus week for me and so I was delighted to be able to suprise the children with some gifts. I bought a battery powered bubble blowing machine for Elijah and a badge/button making set for Francesca.

Elijah was so into the packaging even before I could get it open - he was very curious and then when I go the machine going and boy it does produce bubbles in abundance he giggled with delight and proceeded to chace the bubbles and the machine. Being a little boy he was also interested in finding out about the source of the bubbles. Being as strong as he is = the bubble machine is no match for him - it needed to be " not for Elijah's fingers. Needless to say a fun time was had by all - how can you then be suprised if it took him a bit longer that usual to go off to sleep

Peace be with you and yours

Hi My name is Elijah. At the time of the wirting of this first post I am 2 and a half. I live with my parents and sister Francesca, in Christchurch New Zealand.

Just after Easter this Year 2006, I was diagnosed with and rare condition called Angelman Syndrome.

This blog is my journery with my family to places we have not been and meeting people we have not met before. This blog also is a vehicle to share with people about Angelman Syndrome.