Friday, September 29, 2006

It works

26/09/06 Night One on Melatonin - gave Elijah .3mg of Melatonin - 20 minutes before bed - he went off to sleep without any fuss and he slept through the night until at least 7:30 am. I got up at 7:50am - how fabulous.

27/09/06 Night Two on Melatonin - gave Elijah .3mg of Melatonin 20 minutes before bed he went off to sleep without any fuss and he slept through the night until at least 7:30 am. We all slept in till 8:20am shock horror.

28/09/06 Night Three on Melatonin- gave Elijah .3mg of Melatonin 20 minutes before bed he went off to sleep no prob he slept until 2 and work and then again at 4:15 - I got up to him at 4:15 and changed his nappy which was full. I left him and with 30 minutes he was back asleep and was still asleep at 8am this morning. He usually wouldn't go back to sleep and so this was a bonus.

Because it is school holidays for this week and next week, Julie spent Wednesday and Thursday Morning with Elijah at the preschool and Francesca went well. Elijah is now with the over 2 children. Julie came home quite exhausted both days as he was justa ball or energy - no stopping.

Until next time

Tuesday, September 26, 2006

I collected the presciption for the Melatonin this morning before coming to work and so we will be trialling it this evening to see how it goes. We have been looking forward to this day for almost 3 weeks now and so are happy this day has now arrived. Funnily enough last night I didn't put Elijah's heater on he slept through and so perhaps the temperature of his room is going to make some difference without freezing him. It is spring and so the days in the last week or so have been warm.

We had a great meeting last weekend with 2 other families with "angels" here in Christchurch. It was a great opportunity for the parents to talk with one another and compare notes and stories and encouragement. It was also a good opportunity for our "angels" siblings to meet and interact with one another. There were two other families who were unable to be with us and so hope that in November we will all be able to meet up. By then there will also be a sixth family resident in Christchurch.

Julie has also enrolled Elijah in some swimming lessons and hydro therapy - this will start in October and will run for about 12 weeks. I am sure he will both enjoy and benefit from both of these. It is school holidays at the moment and so Elijah's Support worker will not be at the preschool this week and next week and so Julie will be attending in her place.

Overall we are a happy family with things on the siezure front and we are looking forward to some good nights sleep ahead - yeah

Until next time.

Thursday, September 21, 2006

Great news - today our GP wrote a presciption for melatonin for Elijah - made my day even before I got to work this morning. Julie rang the GP and she said it's worth a try. This will be suspended by the chemist as elija is aunbel to swallow tablets and will make it easier for him toi take in liquid for. We will have our first dose tomorrow night once collected from the pharmacy.

Here goes and hoping and praying it will have the desired effect - as and hour after beign put of to sleep he managed to ping one of the safety pins on his overall suit get his hand in remove his nappy and wet him self his clothes and the sheet - good job the matress is covered. And still he was a live wire - this picture is Elijah very very late at nght and ready to party. Peace be to you and yours - Dad

Tuesday, September 19, 2006

Gretting one and all

And so the saga continues - funny it's almost a week and no word from the specialist. This whole sleeping thing is now becoming crazy. I have managed to find a presentation - Sleep Problems in Individuals with Angelman Syndrome - given at the International Angelman Sydrome Organisation Conference in 2001 by Joseph Wagstaff - ( and associated study and so have sent this to the specialist supporting our request for trialling melatonin - hoping to hear from him soon. Julie is going to see the GP tomorrow and so will also take the same information and will be requesting melatonin from her as well - nothing like a dual pronged approach.

The funny thing is that in the midst of it all Elijah is the one who most all has no problem keeping a sense of humour.

I think our kiwi ingenuity has managed to put and end to the escapism that we had a bout of and we will be making contact with a seamstress soon to work on some night time clothing for Elijah for the Summer, which is not far off. The spring has brought with it warm weather and so we have been able to make the most of this with trips to the park - Elijah has enjoyed getting out in the leaves and the dirt.

As previously mentioned we have a gathering of families with angels this coming weekend and we are very much looking forward to this and it will be good also for the siblings of our angels to have some time together as well.

Well until next time - may peace be upon you and yours and health to your enemies enemies.

Thursday, September 14, 2006

Well I finally tracked down the specialist - after much ringing and was almost ready to setup camp in the paedetrics department. I was able to speak to him in person and let him know how things were going with the medication - which he was happy about. I then talked to him about Melatonin - we had a discussion and he told me that the info out there is that it is effective with small numbers of children although some out there swear by it. He told me it was used for children who were blind who had difficulty distinguishing between the day and night and some people had had sucess for other kids who experienced sleeping issues. He told me that it is most effective for helping children go off to sleep but not of benefit for kids who wake during the night. And there cannot be alot done about that - some sedation meds possibly to help children reset sleeping patterns, but only in the short term and not in the long term. So he is going to do some looking into how melatonin interacts with the Epilim that Elijah is on and will be in touch. Well I hope that this is not too long before we hear from him.

The fun is that for us we don't know when Elijah is going to easily go off to sleep or when he is going to wake during the night or for how long. I hope and pray that at least the neuro may give the go ahead for us to trial the melatonin - this may restore some degree of sanity to our house.

I took Elijah to see the Opthamologist (read eye specialist) yesterday and that went well - Dr is very happy with how Elijah's eyes are and there are not any other ongoing issues for Elijah and his sight. He said if nothing has shown up by now tyhe chances of something developing would be quite low and so we will be in touch with him again only if needed in the future.

It's the week for specialist this week as I will take Elijah to the ENT Specialist tomorrow - read Ear Nose and Throat. Elijah is foever blocked up even when he doesn't have a cold and I reckon his nasal pasages are narrow and he snores like a giant when he is even a little blocked up - and so need to ge this checked out - I am imagining now how much fun it will be holdin onto elijah whilst the doctor tries to look up his nose - no problem with the ears and the throat - well al long as the Dcotor doesnt put his finger in Elijah's mouth he should be safe.

Well I talked with Julie this afo and Francesca has a high temp 40C and so this should be fun - she won't be at school tomorrow and so I will take Elijah by himself. Work have been very helpful and supportive to us particularly when we have appointments for Elijah

Until next time hoping to have a reasonable nights sleep.

Wednesday, September 13, 2006

Sometime it just seems like all in life is a blurr and well this last week has been a bit like that. Whilst I was excited by the prospect of getting on top of the meds with Elijah this has all truned a bit to custard. BOth Julie and I rang the hospital on 5 occasions and then heard back from a nurse who looks after Eipilepsy and children who have seizures called and both Julie and I spoke to her at length. She told me that she would be speaking to the Neuro Team the following day and would be back in contact. Well it's been almost a week and we didn't hear anything. So I rang and learnt that in fact it was her understanding that the specialist Neuro was to have contacted us to talk about the seizure meds and possibly about some malitonin - to help with Elijah's sleeping. Well the last few says we haven't heard anything and well after the waking at 4:45 this morning feel a bit sad. He better look out we might have to setup camp in the Children Paediatrics dept until we see him. Mind a ray of hope - the mum of another angel in the city - who wouldn't be sane if her son was not on Melatonin - suggested we should see their Doctor who prescribed the Melatonin for her son. Might be an option if we don't seems to get anywhere in the next few days - The sleep deprived one.

to be continued

Monday, September 04, 2006


2nd of September 2006
The next challenging thing along side of the escapism - is the sleeplessness - which I think probably encourages the houdinism. Both Julie and I although more Julie are getting pretty weary - Elijah is likely to wake at least once a night if not more and well everynight you can't be sure what you will find when open the door - although a smile and a laugh are almost predictable.

The challenge has now been getting him off to sleep as well and so we are in the process of two things - 1) finding someone who will either take the zips of the front of his pyjamas and put them in the back and 2) find a sympathetic Dr who will prescribe us some melatonin to give both Elijah and ourself some peace at night. Our current Dr is not so keen on the melatonin - she doesn't believe in it - well we do from all our reading and are keen to see if this will be of benefit.

03 September 2006
I am happy to report that after some pushing and shoving and a number calls to the hospital, I feel like we have made some progress. I have made contact with a Epilepsy Nurse at the hpspital who will talk with the Specialist tomorrow and is going to recommend we trial some Maletonin - and see what the specialist has to say. She also told us that she will now be our contact person if we want to talk to someone about Elijah's medication particularly in relationship to his seizures but not exclusively. This is a key contact and now we don't have to go via our GP (family doctor) who has not been particularly helpful these last couple of weeks. You know I hatre to say it but the squeaky wheel gets the oil and persistance pays of a bit like the parable of the persistant widow in from the Bible - Luke 18

"Then Jesus told his disciples a parable to show them that they should always pray and not give up. 2He said: "In a certain town there was a judge who neither feared God nor cared about men. 3And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'
4"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, 5yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' "

We give thanks to the Lord that we might now be able to make some progress in this matter.

Until next time

Friday, September 01, 2006

Houdini lives again...............

I know that across the world there are many parents of angels who have to deal with on a day to day basis the 'houdini' characteristic present in their angel.

I have to say that up until now we have sort of had a handle on Elijah's attempts and the successful attempts to extricate himself from his pyjamas. We only recently had to safety pin the zip on his full body pyjamas. Well this has started the nightly challenge of him trying to pop the safety pin free himself from the pyjamas if only partly remove his nappy and mostly thanks be to God - wee. The other new thing he is up to is to pull his legs up out of the leg holes and to sawp the legs over and then cray out or to jam them both down the same leghole and then to cry out in frustration.

Well last night was just the craziest yet and today well here's and example - managing to bob the safety pin and then trying to get out of the t shirt after having removed his nappy. Tonight we have him in this outfit and a sleeping bag over hte top double pinned with safety pins - here to a good night's sleep (he went ot sleep about 9ish) and the inspiration and guidance of someone to hep make some suits with the zip up the back and a tie to stop him puttling his legs up

Ah the joys of life - until next time.