Well we are now in the season of Christmas, celebrating the not just the gifts and the family time but the Birth of Jesus Christ. It has been said Jesus is the Reason for the season. It could be for us as a family a particularly sad time if we allow it to be, I’m not sure that this is what Elijah would want for us. But rather Elijah (Yaweh is my God) Michael (who is like unto the Lord) he would want us to have a primary focus on Jesus the reason for the season first. This is something that a counsellor had said to us as well. This does not mean to say that this is not a time that is tinged with sadness that Elijah is not present with us in the flesh to share it with us, or no gifts under the tree from us or from Santa Claus and there is real pain associated with it and an opportunity before us – what do you do with the pain?. Do I allow my soul to enlarge and grow as a result and welcome or even readily embrace the times of pain or darkness, or do I not allow my soul not to enlarge and resent the pain and times of darkness. Well I have decided to choose the first path – the path to growth – I remind myself – grief is the price I pay for having loved. I am consoled that the will of God will not take me where the grace of God keep me.

In book I have been reading called something like A Grace Disguised – I’m not sure I have brought it with me out of town – the author writes a chapter – called Amputated from Self. One of the things the author make reference to amputees and how these people they experience and itch or some sort of sensation in the limb they no longer have and this called having a phantom limb. I’ve been in a season of this and have missed Elijah physically – and I guess some of the things like going to church for Christmas is just not the same – and it’s got a weird sensation about it – like the limb that is missing. Francesca wondered to me if Santa Claus knew that Elijah was now living with Jesus in heaven – I told her that I had told Santa already. We had a breakfast on Christmas Day with our close friends Bernard and Andrea and their daughters Siobhan and Briana– who live 9 houses down the road on the same street. We have done this each Christmas since we moved to Christchurch. Julie and I had already had a good crying session earlier in the morning. Julie myself and Francesca delivered Christmas cards to friends and then took deck chairs and spent some time at the cemetery thinking and talking to Elijah. On December 26th we drove south to Dunedin all up a 5 hour drive – could help looking for Elijah in the space he always occupied in the back seat behind Julie. We are staying with my sister her till just before New Year and will head home. Their house has many memories of the one and only trip we had with Elijah down here.

The loss of Elijah cuts both ways. On one hand we experience – the pain and loss of him and yet now he enjoys eternal life free from his physical struggles – no more seizures and physical restrictions. One the other hand Julie Francesca and I are able to freely travel out of town and stay place in a way that we could have not done because of needing to consider Elijah’s needs. This “freedom” is Elijah’s gift to us bittersweet though it might be.

Today whilst at and Aunt’s house she shared with me of how she was touched being with us in Christchurch for the Family vigil and funeral when the Lord called Elijah and how she has also shared something of Elijah with other friends and people she has met. The ministry of Elijah continues. I have a DVD with some footage of Elijah with me and will look to get a bunch of copies of this run before we head home to share with family. I am watching this DVD as I type tonight – all of the rest of the family and my sisters family are in bed asleep – this is a special time that I regularly like to share with my beloved son. Sometimes in tears, sometimes in awe of the gift from the Lord that Elijah and gratitude and thanksgiving for the journey thus far.

One of the clips has pictures of Elijah set to the Josh Groban song – you raise me up and the other is set to the song sung by Celine Dion. Both were used at Elijah’s Family Vigil.

In the days following Elijah going to the Lord one of my work colleagues sent me the words for the Celine Dion song Fly – I listened to it on the net and it sent ripples down my spine – it still does and in closing tonight I share them.

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath,
don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

Peace be with you and yours.
Darren

Check out a video clip of the Canterbury Angleman Syndrome Family end of year picnic

Today has been a tough day, tonight I cried alot. I rang the tax department today to let them know that Elijah had died. It was the last of the organisations that I had to contact and I had been putting it of as this was the last people I had to contact officially.

I just felt a need tonight to see Elijah and so went through a bunch of video tapes with him on them even the ones with seizure activity. Just to see my son and so wanted just to reach into the video and hug him because I misss him so much. The tears welled up and I really felt like someone had reached down inside me and ripped my guts out such was the pain.

Last weekend was a special childrens Christmas party - for kids with disabilities and terminal illness etc, Elijah had been the last two years. I went with him last year. I met up with another dad whose son has Angelman Syndrome and so Markus and I and Elijah and Tobias all had a great time together. This year I went remembering Elijah to give time to help and ended up facepainting. Something I have never done before. I saw Markus and Tobias and felt a little naked without Elijah, but painted with the help of his markus a big red heart on Tobias' cheek, I did christmas trees and rainbows and snakes and swords, and bumble bees etc etc. I came away a little sad, but felt good about about taking a few hours to paint faces to put a smile of kids faces, something Elijah always did so well, without trying. The following are picture from Last years Special Children's Christmas party

Elijah and some of the entertainers

Elijah's Only Facepainting Elijah with a gift he received

Elijah and his Angelman Mate Tobias sharing bananas

They have fruit and food, facepainting, entertainment, fire engine, police, bouncy castles etc and also the Santa Cave with fabulous gifts of all the children, provided by sponsors. It's a great event, I will be booking it in my diary for 2008.

Till next time - peace be to you and yours

Darren

Hi All,

Peace be with you and yours. They life goes fast when you're having fun, well can't say the last three months have been fun but most certainly they have gone fast. Today is 3 months since Elijah went to the Lord. It's be a day of vivid memories. Today Francesca has been home from school because she is unwell - bad loose cough and sniffling nose, and high temperature this was how Francesca was the week before Elijah, in fact we all had some of this and it was on the Wednesday that Elijah began to have the same symptoms which caused his temperature to rise and the seizures to come on so massively. I reflected to Julie that if Elijah has survived the seizures in August, he may have very well been facing the same thing this week and the possibility of seizures, and who know from there, it has been very hot in the city today - which was another thing that Elijah's body didn't tolerate very well is the hot temperature. I guess part of this was his inability to be able to regulate his own body temperature. I can understand that Elijah would have always had the challenges that seizures face and a little boys body is only so strong to regularly suffer such assaults.

We sat and watched the DVD of the music and videos played at Elijah's vigil this morning and cried and had a prayer together - boy I miss my son. I didn't go to work today but worked from home. This was a blessing - it was a very melancholic day - thinking about how the day unfolded for us 3 months ago. It was late on Sunday night that we learnt the full extent of the damage to Elijah's body, severe and irreparable liver damage - severe kidney damage and the CT scan of his brain show severe and massive brain damage we saw images of the CT scan on monitors and it was a shock to show that the highlighted areas were not the normal brain tissue but the damaged tissue and this was at every level, this was caused by the length of the seizures and the lack of oxygen, it also meant that the muscle tissue that had been starved of oxygen during the long seizures had begun to waste away and break down - this was irreversible and a contributor to the liver damage. This was like being smacked in the face with a brick, when we went into the room i knew that for Julie I had to bring in our close friend Andrea. Our specialist told us that that Elijah's condition if survivable would mean he had no motor function and would literally be able to do nothing - however after consulting specialist did not believe that his condition was survivable and that he was unlikely to live any more that 24 - 36 hours. His liver would stop functioning and his kidneys would completely shut down, which they had already begun to do. We were told that the only thing that would continue to keep him alive was the ventilator, his body would shut down, first liver then kidneys and then fairly soon after that the levels of bad stuff in his blood would cause his heart to stop. They would continue to make him comfortable, and presented us with the possibility of turning off Elijah's ventilator or waiting for him to pass away. By this time his body was already quite swollen because of the amount of fluid in his body to help keep him hydrated and his blood pressure down. Julie and I decided that we would gather the family and friends and give people and opportunity to say their goodbyes to Elijah and we made the decision we would turn off his ventilator later the following afternoon - by now it was close to midnight. I will come back and share some more about the day and some of the wonderful things that happened in the ensuing hours - sufficient to say that we sent for Francesca, as there was a possibility Elijah may not have lived through the night and i ran my immediate family to tell them the news and dad and his wife and my mum left almost immediately to come to Christchurch - 5 hour drive and my sister and nephews at 7am and my sister was able to book a flight to come from Australia.

It was a day of grace - a day of letting go - all of the family arrived and close friends had come to visit with us and Elijah throughout the day to say their goodbyes, we had prayers together as a family with our parish priest and then Julie, Francesca and myself together with our close friends Bernard Andrea, our parish priest were together in Elijah's room with the medical staff as over 40 minutes they slowly turned down Elijah's ventilator - Elijah was in lap as he is in the photo right here - I guess the biggest thing for us was that we thought that Elijah might struggle to breath, but this was not the case - the staff had turned off the monitoring equipment and peacefully as we prayed the machine was switched completely off and Elijah went to his Lord and we let him go. As I will share later it was not hard to let him go as we knew that for Elijah his life had not ended by rather changed, but none the let the physical separation is hard - very hard. While I held him they removed the tape from his mouth and the ventilator tube and cleaned around his mouth. I stood and hugged my son like I had never done before. Only this time I had to wrap his arms around my shoulder because he couldn't do it himself anymore like he used to so many many times before - I held him tighter than I ever had before and kissed him and held him - in that moment - I had a maternal sense of the Mary the mother of Jesus when Jesus was taken down from the cross - picture in the famous Pieta sculpture and the words that I heard in head were " I too held the lifeless body of my son in my arms" What a words of comfort - a knowing that I was not the only to have experienced the letting go. Those few moments whilst the family gathered again were for me a moment when time stood still and it seemed so long. I held him as we prayed together again and we prepared Elijah to be looked after by the hospital staff before my friend the funeral director came to collect him the following day. After our prayers, I laid him on the bed, this time he was different, but none the less hard to leave him but knowing his body was in good hands. Julie had brought in some of his own clothes to wear and that made all the difference - more the Elijah that we knew that the little boy in a nappies with tubes and iv lines etc. For me I am sure that I know the point in time when the irreversible damage was done in my spirit there is just a sense that in retrospect I knew - I think from that time he was waiting to go. Today I sat in his room at home and held his blanky suit close to me at 5:40pm and felt like I did as I held him in the ICU 3 months ago and I wept, for the first time since then it was like I felt him touch. I know that the Lord had plan and purpose for Elijah's life and that is far from finished and i know that the Lord's plan and purpose for our life as a family is far from finished as well and journey of grief at the loss of Elijah is part of the journey.

Thanks for sharing the journey with me.

Pain nourishes courage. You can't be brave if you've only had wonderful things happen to you. - Mary Tyler Moore

This us a photo that my Dad sent me yesterday, one of the opportunities that had to turn Elijah's world upside down and you know what he enjoyed it just all the more and although it's a bit hard to see the smile here on his face I can assure you that he is smiling. We all miss Elijah being physical with us, climbing on top of us and down and kicking and from time to time pulling hair. Always doing something - climbing on something or climbing down or trying to get in or out of something. This was on the reasons why it was so strange and hard in a way to see Elijah inactive at the hospital for so long, it was just not him and I guess we were all hoping that within a few days that he would be back to being his active self as was the case following the other visits to the hospital. Even in his new bed, there was no stopping his movement and we never really managed to get blankets over him at any time during his life apart from when he was a small child, and safety sleeps for a short time and lots of safety pins. I'm going to share some more retrospectively about Elijah's time in the hospital and the journey - I'm going to share some photos as well that some might find hard to see but these are part of the journey, and I'm choosing to share them as part of the journey.

Lying still, or staying still in any way shape or form was never an activity that Elijah specialised in even when he wasn't feeling so flash there always seemed to be some energy in his system that sparked him along. Only if he was really not doing well was he not active. Even following visits to the hospital it could be hard to convince the hospital staff that he was still having seizures at time because he would be so active in between and the staff saw his activity as a sign that he was ok and nothing was going on. I guess it becomes easier over time for Julie and i who have observed Elijah over the last year +. On thursday night we put Elijah off to bed, we knew his temperature had been up - as a result of the coughy bug that had been going around and so so we knew that we might have been in for a bit off a challenging night. Elijah had couple of drop seizures during the day but not alot but none the less we prepared ourselves for a possible long night as we had done a number of times before. I came home from work and we had dinner and fed Elijah and prepared him to go to bed as always little did I know of the night ahead. Elijah settled and stirred a little after 8 and he was hot 39 deg C and so we took some of his clothes off gave him a wash down, Julie had given him paracetemol and so after hi temp still being up we gave him a dose of Ibuprofen, he was having a few drops and was a little unstable, we cooled him off with a cool facecloth and things settled down close to 9pm and so we let him settle go off to sleep which he did, and so we put Francesca to bed and in time both Julie went to bed and so did I.

To be continued

The last couple of days have I've been emotionally unstable - tears close to my eyes, and a bit distracted. On Sunday night I put pen to paper (read fingers to keyboard) to write a dedication message about Elijah for the Angelman New Zealand newletter. It took me a good hour or more with tears to write it and this is what I wrote.

Elijah Michael James Humphries -Born 7 February 2004 Called home - 13 August 2008 - treasured son of Darren and Julie and much loved brother of Francesca. As a family we give thanks to God for the life of Elijah, and for the Angelman Syndrome that he journeyed his life with. The house is quieter without Elijah on hands and knees chargin up and down the hall, wrestling with Francesca, smiling and laughing and seldom frowning, Bananas, go off more quickly because they are still here, and not readily consumed, as he was accustomed to do, the nights are quieter too and it took some getting used to sleeping through the night and not waking to be gretted during the night by a smiling often naked little boy displaying his handiwork a shredded nappy or pooh paintings. For all of these things we give thanks. A testimony to his life is the tremedous joy he brought to everyone he met.It is only in his passing we have ralised the lnumber of people Elijah and his short life have touched and will continue to do so. We grieve now but only becuase we loved. We express our thanks to all who have sent us cards and messages. Please continue to journey with us via Elijah's Blog - http://elijah-angelstory.blogspot.com/ which Darren continues to write. We continue also our journey in Elijahs' memory, working with families of children with Angleman Syndrome and working to promote an awareness.

I guess it's just the reality that Elijah's no longer physically with us - takes some journeying through. I've been sleeping ok, but phyiscally on edge yesterday - told my boss frist thing in the morning - funny hope people react when you tell them you are emotionally unstable today and could burst into tears at anytime. It took some energy yesterday to focus on what I needed to do at work, one job at a time.

I slept ok last night and will see how the journey goes today - the photo above was taken at the Gethsename gardens here in Christchurch a beautiful private gardens. It was the photo used on the from of the Order of Service for Elijah's funeral. It's funny how some of the nicest photos are the ones you take youself and are also very improptu.

I'm glad that the Lord has something much better in store for me cause the pain of loosing Elijah is intense, and can just creep up on me when I am least expcting it.

Peace

Darren

Well Friday went ok for us as a family, although it was a full on day. Julie Francesca and I went to see a counsellor who we have been seeing for a couple of weeks. She is from Catholic social services, Julie has spent some time with her before around the whole area of grief after Elijah was diagnose with Angelman Syndrome. The appointment was just after lunch and we had been told by the courier company that they would be around to collect Elijah's things after 2. So I dropped Julie at the mall and took Francesca and headed for home. 2 o'clock came and went and so close to about 3 I decided I couldn't wait any longer and so i hunted for an elm key and began to dismantle Elijah's bed myself. I started on it but found that the slats and the mechanism underneath it that was used for lifting up the bed was to heavy to be able to lift out on my own. I called a Friend who is a teacher but who was on holiday because it's school holidays to come and help me. At the same time our close friend Andrea arrived at the house. Robert and Andrea helped me with the taking apart. The good thing about this is that I was here when they put it up and so knew at least how it should come apart. I guess it was a bit like driving Elijah to the vigil and the church and to the cemetery it was something that I would have preferred to do, something personal for me as Elijah's dad, an act of service for my son. It was not until after 4pm that the truck turned up to pick up the things, by then Julie has come home. The three men who cam quietly took the bed an Elijah's high chair, stroller, walker and car seat and in a short time they were gone, this was the leting go of these things. I guess we had been preparing ourselves most of the week and so when it came the day it wasn't as difficult as first expected. We moved Francesca into Elijah's room and moved the large photo that we have of Elijah from his room to the lounge. He is never far away but sometimes not close enough. I do miss hugging him and seeing him in the flesh each day, although I visit the cemetery each day it's still not the same. People say the pain will lessen over time - I trust that this is the case - by it is very real now, and really quite indescribably. All I want at the moment is my son alive and well, but I know this is beyond my grasp. Julie was folding some Elijah's clothes to put in a large plastic container to go in the Elijah room. I stopped and picked up one of the helmets that were made for him to where so he did not hurt himself if he experienced seizures - I found myself feeling angry - it's not *(&(* fair I found myself saying and found both the pain and the tears welling up. Julie moves to comfort me but I just needed the space. The Bible says - though I walk through the valley of the shadow of death I fear now illl for with your rod and staff you comfort me. The emphasis is mine in this passage and is important and i take comfort in these words they are not static words - I remind myself that it is a journey filled with pain and suffering yes, but a journey none the less

It's going to one of those weeks you know, I guess for me it started Friday, I had a day of really missing Eijah and then knew that on Saturday that we had to return some toys to the Special Needs Toy Library in the city. They were due on the weekend that Elijah was in hospital. It was a blessing to have a couple of the staff from the toy library attend Elijah's funeral. I had rung them the week after we buried Elijah and asked about having some one come and collect the toys that we had borrowed for Elijah but never quite got back to them to arrange a specific time to arrange this. although difficult I knew it was important that I make that trip. I guess there is nothing quite that i could have done to prepare myself for how difficult this was going to be.

On saturday morning we made a list of all the things we wanted to do and then made sure we had all of the toys for the library. We couldn't find all on the pieces for the skittle set which he enojoyed so much but having moved house as well they were bound to be about the place somewhere. I searched in the garage and there among alot of things that we still have to sort and bring into the house were so many reminders of Elijah. His cot which he spent so many sleepless nights in, which he joyfully covered in pooh, and shredded so many nappies in. His old car seat which he so many times wriggle his arms out of, I lots count of the number of times i had to stop the car and restrap him in or tighten the straps so he couldn't get out and it seemed the more I tried the more he tried as well. His old stroller which we wheeled him in, in fact it was originally bought for Francesca and Elijah inherited it when he was born and Francesca had out grown it. It carried him for so many trips to the preschool, I used to put it in the car and take Elijah to preschool along with the stroller and Julie would then go and pick him up and wheel him home. There were other toys that he delighted to play with and I held some of them and cried, thinging of the many hours they delighted Elijah, and he was delighted with them. I looked high and low and we couldn't find them and so on our way we went anyway. It was another of those journeys we so often made on saturday mornings to the toy library although there was something so different about this trip, it was without our little boy and was to return some of the toys that he loved so much. We parked right outside the library and Julie and Francesca waited in the car as i took the toys into the returns desk. I told them that they were overdue and that i could not find some of the items, and that the reason why they were so late was that Elijah had died and we just hadn't got them back. My eyes filled with tears and I was overwhelmed by what what going on inside me. One of the ladies Donna who took a special interest in Elijah came and told me that i shouldn't worry about any missing pieces and any late payments, i said i just have to go, and she came with me outside. She told me that she had been thinking alot about us and Elijah and asked how we had been and I told here that our journey was one day at a time. She invited us to still come back if we felt able to borrow toys. I got back in the car and told Julie "that was pretty hard" and disolved once again in tears and we all cried. We left the library grounds and drove down the road and I pulled over and we spent some time crying. I miss my son. We went to church on Saturday night and then to a concert. A friend was in the freinds and family concert - part of a 128 member barbershop choir. One of the guests sang the Josh Groban Song " You raise me up" - we used this song along with photos of Elijah at his family vigil on the night before his funeral - Francesca observed to me during it " Daddy mummy's crying" and then " you're crying as well" As i closed my eyes I could see the pictures of Elijah that we had put together to this music. Sunday we didn't go anywhere and i just didn't want to be around people and so we stayed home, Sunday night I cried myself to sleep, I knew it was going to be a tough week.

On Friday Elijah's bed, highchair, stroller walker and car seat will be collected. They are funded by the government for Elijah's use and the time has come for them to be returned. Francesca will be moving into Elijah's room and we have bought new beds for Francesca and one for Elijah a single bed which will go into the room that Francesca is vacating. It will be a hard day on Friday I know because Monday and Today has been emotionally challenging days for me, as well as Julie and Francesca.

"Grief is the price we pay

for having loved"

It's been a tough month since I last posted so many things happening and so many new things to come to terms with since Elijah went to be with the Lord. Just simple things like sleeping through the night and not going to sleep with one eye half open and one ear cocked awaiting to hear Elijah's distance call in the middle of the night. Elijah was almost always the first person in the house to greet me in the mornings when I rose and so I miss that as well. These are just ordinary day to day simple things that I have found hard, or just expecting him to come charging down the hallway at break neck speed grinning from ear to ear and then pulling at me to get my attention or have he lift him and cuddle him only to be wanting to be getting on with something else most often in the morning being ready to eat. there has been a strange stockpiling of bananas in the house - oh how Elijah you use to eat so many. I now try at least to eat one for Elijah's each day.

Something special happened for me on Thursday night, I was coming home from work and this night a bit later than I had before and our close friends were coming for dinner, and so not all of us were going to visit Elijah at the Cemetery as has become our custom as many days as possible. I had been to see Elijah and was driving home on the way to the supermarket. As I drove down this stretch of road my eyes were drawn to a light blue balloon making it's was across the street and then my gaze was drawn to the little boy who had just lost the balloon and could see that he had tears in his eyes and his mother was trying to calm him and explain to him that there was not a way to retrieve the balloon. I knew i had to stop and as came to a stop I could see that the balloon has gone down the bank and was just in the edge of the Avon River and was moving not fast but stying pretty close to the band of the river. The thought came into my head I've just got to get that ballon for the little boy even if it means getting wet. (at Elijah's funeral all the kids let off helium filled balloons after Elijah's casket had been lowered and the sight of this balloon same colour spured me on) I ran and climbed down and got hold of the balloon. I scramble up the bank and onto the foot path and could see the the lady in the car had her indicator on showing she was about to pull out into traffic. I wave at her and thankfully she saw me. I crossed the busy road and she was standing by her car when i reached saying" I know someone who will be happy to see you" I replied I couldn't let a little boy loose his balloon. She opened the back door and there was a little boy about 3/ 1/2 to 4 beaming from ear to ear as I handed him the balloon and he said thank you very much. I said it's my pleasure as i know what it's like for you to loose something. I shared with the little boys mum that the colour of the balloon reminded me of Elijah and that he had passed away recently and we let off the same coloured balloon at the cemetery - and I knew I had had to stop. I got back to my car and wen "YAHOOOOOOOOO!" it really made my day and left me of the sense that the spirit of Elijah was with me.

Till next time - still preparing to share some more. - Darren

It's been more than a week since my last post and I have much to share the short is that damage that the seizures caused Elijah's body was too much for his body to handle and he suffered total liver and kidney failure and massive brain damage - and was not expected to live 24 hours and so we gathered the family and let him go to Jesus when his ventilator was turned off to allow him to breath on his own which he didn't and he went to be with the Lord approx 5:40 on Monday the 13th of August 2007. For Elijah life has only changed not ended. I want to share the journey with you as I have for these many months, the last hours of my son Elijah's life, what I am going to share with you maybe hard for you to read as it is hard for me to write but as I have always share the raw reality highs and lows of the journey I will share it like that still - I will be writing in several posts.








- I slept overnight on Saturday night with Elijah and there was no real change to Elijah's condition. I am sad to say that Elijah did not make any more progress and than my last post. When the medical staff tried removing the breathing tube from Elijah on the ventilator on Sunday Morning he did not respond breathing on his own as he had been doing on the ventilator and so they had to put the tube back in. We learned on Sunday afternoon that some blood tests that had been done had brought back some significant results. at least two areas of liver function we abnormal. In most of us these levels would 100 and post seizure it's not uncommon for the reading to be up to 300, in Elijah's case they were 16000 and 17000 repectively - we knew that Elijah's liver had sustained a significant assault and so the decision was to add plasma, and some other medications to combat this assault, at that stage we really had no idea what other damage Elijah's body had sustained. Julie was due to sleep over and a close friend went into the hospital and I was going to sleep over. Francesca was sleeping over with close friends who live 9 doors up the road. I got a call from Julie to say that our specialist had decided to do a MRI scan. We had been alerted the day before that there was a possibility of Elijah sustaining brain damage, but the reality of this had not yet be realised. I said I would come back into the hospital. I found myself being physically sick and whilst talking to a pastor on the phone I really lost the plot. Because of the sustained length of time that Elijah had been on the ventilator that he along with Julie and I would be transferred to Starship Children's Hospital in Auckland at the other end of the country. Family soon 3 members of the leadership team of the Christian Community that we are part of were on the door step, to cry with me and to plan for the possibility of the the transfer which was almost certain to happen, so we worked through a plan and prayed and then one of the brother drove me to the hospital and another took my car in. I told them today is not the day for dying ! - to be continued - Darren

Dear Friends and Family,

Thanks to those of you who have sent messages of encrouagement and support and offered intercession for us and Elijah as well feel buoyed by this and hapy to report that Elijah is progressing.

Julie slept in the hospital with Elijah and he was sedated overnight. This morning they stopped the sedation @ 5am and happy to report this ealy this afternoon, Elijah initiated breathing on his own - Thanks be to God. We now need to wait for him to awaken himself - his body will be exhausted and it will take some time for it to recover. The medical staff will only remove the intubation tube connected to the ventilator when he gains consciousness - in the meantime it is giving him some added oxygen and so it's now a waiting time for him to wake on his own and there is no time frame on this. The Medical staff have been just fabuluous. After the he is off the ventilator he will be move from the Intensive care to a children's ward and the whole thing reviewed from there and kept under observation. This is the worst lot of seizures Elijah has ever had.

I hope to have another update when he stirs or perhaps tomorrow morning - thank you so much again for your prayers and you emails txts and good wishes. Please also keep in mind another little boy Brady who also has angelman syndrome and live in Alabama in the U.S. who has also been hospitalised with severe seizures.

Love and regards to all
Darren - on behalf of the Humphries Family

Friday 10/08/07

Hi friends,

Elijah hade a fever as a result of of some flu - coldy stuff that's been about in our house this week. Woke at 5 with a 15 minute seizure this morning - can't remember what it's called - jerking extremities - was about to take to hospital and then he was having seizures every few minutes with short gaps and so we called and ambulance - when I got to the hospital he had sezied in the ambulance and was then had a prolonged seizure lasting and hour - with vomitting - the end result was that he was have difficulat with breathing and oxygen saturation low - the long and short is that he is intensive care on a ventilator - to help with his recovery - this will be reviewed but he may need to be on it for up to 24 hours and see from there.

We have had a good number of trips to the hospital before but nothing this intense. Julie and I have been on quite a rollercoaster this morning

If you pray I would ask you to pray for Elijah Julie myself and out daughter Francesca - if not please send us your good thoughts.

Darren

Update

Well it's been a couple of weeks since I last made and entry and this has mainly been because of sickness in the Humphries Family and so less time online to be able to update. It's been everyone who has been unwell including Elijah, this has meant for him and increase in breakthrough seizures culminating in vomiting and lots of seizures and a visit to the hospital. We had added clobezam to Elijah's medication to settle these for him. This has mostly been successful with a few seizures above it but only a few thankfully. We are not due for another appointment with his specials until late in July but we have been keen to try and make this earlier but only in the last day or so have we been able to feel like this is possible. Julie has been blocked up with flu an last Thursday being my 40th birthday none us were well Francesca include and so we had a quiet day together.  We have managed t make contact with two new carers to help us with Elijah, on was able to help us last Friday and the other on Saturday - we were getting pretty worn out and were grateful of the respite and both will be able to help us on an ongoing basis. This is a bonus for us on top of the help we have with Elijah on Mondays and Tuesdays. This has made a tremendous difference for Julie, being able to rest or get out of the house on these days. It's  Francesca's 6th birthday tomorrow - boy don't your kids just grow up so quick - and so my mum is town from Dunedin - she arrived by plane tonight and will be with us for a week. It's a couple of years now since she last saw the children and so it will be good for them to have the time with her. I think she will be really surprised by just how much Elijah has grown and certainly how active he is. My mum has had a couple of strokes and so it's not super active and so it will be interesting to see how she reacts to Elijah wanting to climb on her. We'll see - hope to post some photos of Elijah and his Nan.

 

The other exciting things is locally the Canterbury Angelman Syndrome support group have gone live on the web and to date in June we have had 118 visits to the site. www.angelmansyndrome.org.nz   I am working with another local to develop it

 

 

"I don't ask why anymore - it only leads to despair and consumes emotional energy - what I do know is that special parents are gifted with special kids to share their lives with" - Darren Humphries

This weekend was a holiday weekend here in New Zealand, Queens Birthday weekend, which was a good opportunity to catch up with a few people. We caught up with a couple of other Families with children with Angelman Syndrome. One of the families have a little boy who is a little bit olde r than Elijah and his dad is helping me with the website design, we hadn't caught up with them for a while so it was good to visit and compare notes. Today we visited with another family who have adaughter with Angelman Syndrome. Her mum has helped us by making some night clothes for Elijah. As you know we have had alot of challenges with sleeping and Elijah getting into his nappies and things. She was able to make us an inside suit and an outside bag that we can't get into and so we are hoping for a good night's sleep for both Elijah and ourselves.

Until next time

Wednesday saw Elijah have several clusters of seizure in the afternoon well about 30 in a 3 hours period. Not sure what brought them on - he went to sleep early and slept pretty much through the night and nothing out of the ordinary today. We will just need to keep an eye on him. Julie is also still keen to get his ammonia levels tested the Specialist has refused once but we can always ask again. And I will try and contact him tomorrow being Friday, Although I have to confess this is always a challenge.

The exciting new of the week is that the we - the Christchurch Angelman Support Group have gone online @ www.angelmansyndrome.org.nz the hosting of the site is being sponsored along with the domain name registration as well. This is a great opportunity for us be in cyberspace and link with other families in New Zealand and also internationally.

Next week we have a meeting of the support group and will be watching a presentation about the genetics of Angelman Syndrome from the AngelmanNZ conference earlier in the year.

Until next time

It' been a reasonable week for Elijah, no more significant seizure since last week and we have had no change in his medication. We have however noticed that Elijah seems to be having some seizures as he goes off to sleep a couple of people posted on the Angelman Listserve talked about their kids having twitching/myoclonic seizure as they go off to sleep or in fact during their sleep. We have noticed since the last couple of big clusters of seizure he has had in he last 10 weeks elijah is having these. We recognised he "twitching" as seizure activity when we watched a DVD about Angelman Syndrome and the section on seizures shows a little girl with the twitching - fingers, toes, hands and feet. :Last night when he was awake at 2am I noticed he was having the twitching as well both when he was awake and after he closed his eyes as well. This is something that we need to talk to the Specialist about as I wonder if this is partially why he wakes up during the night apart from just having a full nappy. I wonder how much this activity is going on during the night. We might also try and get some overnight video footage.

The other thing we are considering is a wireless camera for his room so we can observe him easily either via a monitor or record his sleeping or not sleeping for our records or presenting to medical staff. The gear will will cost $3-400 and so we are exploring some funding avenues for this.

TBC..........

Darren

Friday
I am happy to report Elijah slept through - he night albeit drug assisted and also Thursday night - he usually only sleeps through -4 out of seven. Happy to report that Elijah has been seizure free today and full on as ever. We are sort of in recover mode. No changes to his medication at this point in time. Dr says not sure it was ingestion of the laundry powder even a little would bring on the seizures - but no other clear explanation to date - not always helpful but the Lord knows. He has however developed a bad case of hives also all over hi body - Dr says nothing to worry some type of allergy - haven't tracked it down. we are giving him some low doses of antihistamine to stop the itchiness.

Well it's been a wonderful day today to balance out the week 1) Julie and Elijah came with me to work today for a meet and greet - the people at my work have been wonderful in supporting our families adventure to the Angelman Syndrome Conference in Australia in October and have raised more than $1000 for us. This was an opportunity for those helping us to meet Elijah. He left his impression - hugged lots of people and had lots of fun in three floors. Then we we took delivery of a new car seat, buggy highchair and walker for Elijah all funded by through Ministry of Health and a bed is on the way as well - all of these things will make life so much easier for us caring for Elijah making life easier for us as well. They are just so wonderful. we are truly thankful - will post pictures soon

On the Journey - till next time
Darren

Elijah was in the hospital on wednesday with seizures - not sure what the cause was today - perhaps the particularly warm temperatures may have set them off but plenty of them, this was coupled by Elijah managing to ingest some laundry detergent - just a little that has spilled down the side of the washing machine - this little boy is so quick to try and keep up with and it's always a challenge and managed to get some to his mouth before he was discovered. He was treated by Julie with some milk as recommended by the outside of the detergent packet. We had some friends take Elijah and Julie to the hospital Emergency dept and I met Julie there from work. Francesca was able to stay with some other friends until we came home this evening. Elijah has a good number of full on drop seizures before going to the hospital and a number on the way and continued to have quite a lot whilst at the hospital. Thankfully the doctor we saw at the hospital in the Children's Acute Assessment dept knows us and Elijah - is one of the paediatric registrars who we have seen in clinics with Elijah's specialist. The decision was to treat him with diazepam a drug that helps to break clusters of seizures and his meds will be reviewed in the morning. It was quite a day today and we are hoping for a good night sleep for him. We waited and hour after he had this med and we will have to see what tomorrow brings. It is only just on a month since were last at the hospital with seizure and so we are hoping for some reprieve in the coming weeks.

We are learning it takes special people to take care of special people

Just a note to let you know that Elijah was in the hospital today with seizures - not sure what the cause was today - perhaps the particularly warm temperatures may have set them off but plenty of them, this was coupled by Elijah managing to ingest some laundry detergent - just a little that has spilled down the side of the washing machine - this little boy is so quick to try and keep up with and it's always a challenge and managed to get some to his mouth before he was discovered. He was treated by Julie with some milk as recommended by the outside of the detergent packet. We had some friends take Elijah and Julie to the hospital Emergency dept and I met Julie there from work. Francesca was able to stay with some other friends until we came home this evening. Elijah has a good number of full on drop seizures before going to the hospital and a number on the way and continued to have quite a lot whilst at the hospital. Thankfully the doctor we saw at the hospital in the Children's Acute Assessment dept knows us and Elijah - is one of the paediatric registrars who we have seen in clinics with Elijah's specialist. The decision was to treat him with diazepam a drug that helps to break clusters of seizures and his meds will be reviewed in the morning. It was quite a day today and we are hoping for a good night sleep for him. We waited and hour after he had this med and we will have to see what tomorrow brings. It is only just on a month since were last at the hospital with seizure and so we are hoping for some reprieve in the coming weeks.

We are learning it takes special people to take care of special people.

Darren

Well the last two nights have not been flash nothing like a broken sleep - Elijah was awake I we both were up with him Wednesday night, Thursday night Elijah woke and Julie got up to him @ 1:30 and then Julie asked we to get up to him after that. I partially woke up and got as far as getting part of the way out of bed as i heard him crying - I have no idea what time that was but I didn't make it any further and I guess he just went off to sleep because I do remember being cold and pulling the covers back over me and went off to sleep.

As previously mentioned we have now some great respite for Julie - 10 hours a week called Home Support and then 36 days carere support to last us through to February - which is still about 1 day a week if we need it. The lady who has been helping is just great with Elijah and also with Francesca and lives locally. We have two other agency lined up to helpus but have not yet identified anyone yet.

Until later Darren

I am happy to report that we are almost one week reducing the Clobazam without thee return of seizures or any adverse reactions - which is fantazmagorical !!!! We still have been having a bit of a battle with sleeping - he has slept through 2 out of the last 5 nights although I happy to report that there is relief on the way. Last Saturday Francesca and I went to see a family in Christchurch who also have a child with Angelman Syndrome. She has offered to make some sleeping clothes for Elijah. We took with us the sleeping suit that he has and manages to get out of and also the sleeping bag that we put him in as well. We had some discussion about what would work best, Trish then took some measurements some photos and said no problem she could make them for us no problem. What a blessing ! No more trying to put safety pins where he can't reach them and him getting into his nappy - this sounds like bliss and the opportunity for more sleep - yeah.

Also I Am most delighted to report that our fundraising for the whole family going to the Angelman Syndrome Confrerence in Australia in October has had another boost we are looking like we will clear 300 on the lamingtons and we were given another 500 from my work - To be continued

I spoke with Elijah's Neuro yesterday and he agreed to in light of abscence of "viral infection" that we could reduce the Clobazam medication that we were giving him for the seizures cause by the infection. So we will reduce by one dose each day and then after one week we can give it away completely. At least this will be one less medication to have to give him.

I also asked him about testing the Ammonia level in Elijah's blood, which I had asked him about before - he seemed a little hesitant but agree to have his blood tested when we were next in - which turns out is not until July - we had read that raised ammonia levels can cause issues like seizure activities.

more to follow

Tonight is Monday - Last night Elijah woke at 10:30 and the last I heard of him was at 12:30 - he was dry and safe - not sure what time he went to sleep - at some point in time - he slept well this afternoon for several hours = he was tired. We have a new person providing care for Elijah - this is just Fabulous and we are using our carer support days at the moment - to give Julie space as well as giving our new carer T an opportunity to spend time with Elijah and also to meet the other people who look after him as well. T and Elijah get on like a house on fire for which we are grateful and so she is helping Julie with Elijah almost every day this week. Julie and I enjoyed having lunch together for the first time in a long long time and then we got the phone call to say Francesca had been pushed of the pay equipment at school and she now has a broken arm - this is the second in 8 weeks except different arm. It's a day at a time - Saturday night/Sunday am was relatively uneventful with Elijah - although Friday night/Saturday am was just horrible - he woke 12:45am - runny watery yukky pooh through everything - had to get Julie up to give me a hand - got him into the bath to clean him off and I had to deal with his bedclothes - and managed to loose a good portion of my dinner = vomiting - I have never ever had to deal with such a foul and awful disgusting smell in my entire life. It's really hard to do things with one hand - might have to get one of those clips that the synchronised swimmers have. I am so glad that we recently invested in disposable gloves and so with the help of half a bottle of disinfectant I was able to rinse the clothes in hot water and get them in the machine for a hot wash. Then I had to stitch up his other sleeping back (with fishing line) regular cotton is no match for our boy. Got him into bed and last saw the clock at 2:30am.

We are still waiting to here from the specialist about the seizure meds - if we keep the Clobazam a the same level - measuring his ammonia levels etc - patience is a virtue - however I will be on his case in the morning - till next time

Darren

Monday
Elijah slept through the night - yeah - well from 7:30 - 6:30 @ least and so we are a bit happier today although Julie has a bad dose of the flu - it's only a fortnight since she was unwell before over Easter - me thinks it's just because she's some what rundown.

Tuesday - Elijah was awake last night and I was up with him 11:30 and 12:45 and 3:45 and this morning he didn't sleep this afternoon and so was quick grumpy but went off to bed early tonight God willing he will sleep through tonight. Julie had some respite this morning and Francesca has been going to a friends after school for a couple of hours just to ease the pressure in the house. I went to work today. I learned today that in the last month my collegues have raised just shy of $500.00 towards our fundraising for our family to go to the Australian Angelman Syndrome conference in October which bring the total to about $700.00. This is just wonderful - we are hoping to bring Elijah into work in the next week so that people at work can meet him.

Tomorrow in New Zealand is ANZAC day the day we remember our war dead and those who fought and did not return and so it's a public holiday here. I don't think I will make the dawn parade @ 6:30 as I have before but will take Francesca to a citizen's service in Christchurch Cathedral @ 10:00 am - here's hoping for a sleep through.
Darren

well you know the song "Time warp" from the cult Rocky Horror Picture show , well if you don't the opening lyrics go -
Riff-Raff: It's astounding,Time is fleeting,Madness take sit's tollBut listen closely
Magenta: Not for very much longer
Riff-Raff: I've got to keep control, I remember doing the timewarp, Drinking those moments when The blackness would hit me
Both:
And the void would be calling
All: Let's do the Timewarp again, Let's do the Timewarp again

It's 3:27am and all is well and I am up - just about lost the plot this morning - Elijah was awake @ 10:30 last night with a wee and this morning @ 2pm pulled all his clothes off and weeeeeeed everywhere ans refuses to go back to sleep. I really don't get it - it's the middle of the night and I would expect him to be tired - for goodness sake I am and I have to confess I yelled at him out of frustration - Julie is blocked up with flu and so it's all pretty crappy in our house at the moment.

Will have to get on the phone later this morning and get some help cause we are not coping really

Darren

Happy to report only a couple of little seizures yesterday - Friday and he slept from 7:45 - till 6:45am this morning - now that's sleeping through the night. Well 6:45 was when I heard him. I have just put him off for a sleep and he is obviously still in recovery mode a bit like Julie and I. Thursday saw some seizure and Thursday night he was awake at 4:00 and did not go back to sleep. so Friday was a long day. I did go to work for an hour and needed to come home, I was pretty trashed and just couldn't quite face the day.

Talked to the specialist neuro yesterday and we will keep o the Cobazam until at least after the weekend and review moving him off it and review the whole seizure thing. We also asked if we can arrange for his ammonia levels to be checked and if high we could treat this to help reduce seizure activity - he is going to check this out as alcatine is not available in NZ. Likely we will have one in the next week. He is also going to follow up with the Children's Acute Assessment department as to why Elijah did not receive the care he needed for the 15-20 drop seizures and hour and why we did not see a doctor apart from the one who was there when we arrived but left @ 7. I will be checking with with him when we talk to find out the explanation.

Not the first time we have not be treated well - like when he was having like 200 drop seizure during the waking hours and hadn't slept for 2 whole days and the registrar doctor says - "seizure and lack of sleep are not related to one another and I'm not sure they are seizure after hearing our desciption and was not willing to spent 5 minutes watching the video I had taken" We were like and what planet are you on - she talked to the specialist who confirmed what we had told her and she admitted that we were right although she did not tell the specalist the amount of seizures he was having - neither did she note that - we know coz we have a copy of his hospital file. - hello

Julie is not flash today and so I have been looking after Francesca and Elijah today - doing ok have developed a new way to get him off to sleep - ear lobe massage. - until next time

About 45 minutes after the last post Elijah woke and did not sleep until about 9am this morning. This was a result of alot of seizure activity I gave him another does of melatonin @ 12:30 and also the antihistamine that we had been prescibed by the Family doctor to knock him out seems like this had the opposite affect- I rang the hospital @ 3:30 and took him in. I was able to get some of the seizure activity on video camera, along with the drops he has startd having othe seizure like absence but lying down blank stare and finger and feet movement - not jerking but more wriggling - these last 10-12 seconds at a time.
He was having about 30-40 an hour of the drops and partial drops. The Children's Acute Assessment won't see him straight away but had to go via th emergency dept. Recently we got hold of a copy of all his hospital notes and have them in a file and so armed with this, my notes on his seizures, and my video camera I high tailed it to the Hospital - at least there is not much traffic on the road @ 4:30am. We presented to the emergency dept and the nurse at the reception was pretty helpful and got us through to the ED quite quickly and so I described what was happening - temp was normal concern was lack of sleep and the frequency of the seizures. Was told we would go to CAA and so gathered all the stuff - i was prepared with change of clothes, toys, sleeping suit the whole lot - we have learned to be prepared. The Dr came after a short time. I described the situation and he was of the opinion that sedatives may have had the opposite effect alongside of a viral infection. By this time it was a bit before 7 and the ward was quiet - one of the nurses gave me some respite so I could update Julie, turned out my cellphone battery went flat and so I shot home to get the charger and got some breakfast on the way back to the hospital. To be continued

He is now asleep and has Clobazam added to his meds at least in the short term to keep the seizures in check. here's hoping for a good night sleep - our neuro will call us to touch base on Friday morning.

Off to sleep for me

Well the saga continues, yesterday saw the beginnig of drop seizures and we were unsure if this was just because of his runny nose and a bit of a cough or due to the waking up @ 4 and 5 in the morning. We probably thought it was the later rather than the former and made an appointment for our family doctor for Elijah - hoping that the Dr might give us something that would help knock Elijah out so both he and both of us could get a good nights sleep. His temp was fine this morning although about 20 drop seizures before going tot he Dr some full on the others half. Got to the Dr and in the sapce of 10-15 minutes his temp had shot up to 38.5 and so the Dr gave him some panadol, gave us an antibiotics even though we suspect it maybe viral - ah it always seems to be and a sleeping medicine that knocks him out - I forget the name and it's too late to go to the other room to check. He slept 90 minutes and more drops throughout the afternoon. - gave hime the meds and food when i got home and pout him to bed. We will have to see how tomorrow is......and so it continues..Darren

I was hoping that my next post would have brought good new on the sleeping front however the good news is that he is sleeping, just not through out the night. He has not slept through the night all week and has been awake at say 11 and gone back to sleep but then awake @ 5 or last night was awake @ 11pm 2am and then from 5am and manged to extricate himself from his sleep gear an proceed to shred his nappy - early morning entertainment and Elijah himself would say - well what else apart from a couple of toys do you want me to do @5am in the morning - surely not sleep ! So tonight we have increased his Melatonin and so far so good - just gone midnight else we might have to seek something that is going to knock him out - not just for his benefit but for us as well. Julie is having someone to look after the kids between 10am and 4pm tomorrow - so she can rest. I am not clear of my cold and so am still a bit weary as I have been up with Elijah as well this week. Most of last weekend was spent in bed or looking after the kids. We did get a couple of trips out - one that included visiting my former manager and he husband about building a bed for Elijah and so the Tech institute he is at is on semester break and so it will be a couple of weeks until we know more. The other was to a place called Gethsemane garden - a local private gardens - wonderful peaceful place we'll go back we did get some photos and the following are some pictures of our sleepless, Houndini - our young man. Sleep Rules

What a last few days it has been - both Julie and I are exhausted, were both have some coldy flu runny nose cough etc - I had Wednesday off work and went back Thursday but still far from 100%, Wednesday night Elijah - woke @ 11pm - managed to extricate himself from his sleeping bag suit and had weed everywhere wand so I the problem was that he has ripped the stitching off the other sleeping bag we put him int. We had bought it and had the zip removed because he was managing to get it undone.) It is now a small zip at the bottom) and this was completely stitched up the side and he ripped the stitching completely down the seam. I first started to stitch it up with cotton and this keep breaking as I was trying to do it tight as I could (by hand @ 12 by this stage) then do you think he would settle into the washing machine with the sleeping bag and sheet, gave him some more Melatonin, and thought he was secure, 60 minutes later (now-about 1:50) more crying found I think that I forgot to safety pin the zip and would you believe it he still had wee in him and so another wee a small one at least, you know what I did I changed his nappy and got out the hair dryer and dried off the sheet in the cot and the sleeping bag without taking him out, he sound it quite amusing - I was not by this point in time. left him, 30 minutes later - more crying and he has managed to jam his arm into the sleeping back how he managed that I'll never know there was barely room to get his arm in the armhole - ah well his feats are mostly impossible - extricated his arm and more Melatonin - well didn't have anything else and I left him heard the last of him about 2;45. what a night.

Thursday was a reasonable day, during the but with Elijah woke again @ about 1:30am and then was awake @ 6 am . It's almost daily been a battle keeping him both in his sleeping attire and I have to confess that safety pins are not quite what they used to be mind you Elijah is pretty strong and I fear this strength will only increase. We are hoping however that he may soon grow out his need to constantly try to get his nappy of especially via wriggling and contortion, I never cease to be amazed at how he can get his nappy of and then want to leave deposits around the house as well.

Both Julie and I have been unwell with coldy fluey stuff and so it means that we have even less energy to keep up with him and of course many other folks with AS kids will know our kids can take some keeping up with. Julie called me this morning (Saturday) low and behold our wee man was awake and it was 2:15am. Another change of nappy a top up of Melatonin and he slept until 6:25 when I got up to give him some toys to play with. I was happy that when I went back to him and hour later he was secure -whew.

We have had some plans for a bed arrive from the USA and I have yet to talk to the husband of my former manager at work who is going to look at them and see if we can build this bed for Elijah. Here's hoping we may feel a bit better in the next day or so (Monday is a holiday here in New Zealand) so we can drop the plans off and hopefully visit a couple of other families locally who have children with Angelman Syndrome.

I guess the reality that everyday will have it's unique challenges with Elijah is settling in my mind and in reality I think these challenges will change rather than go away. I am consoled by the fact that Elijah never looses his sense of humour even at 2:30 or 3 in the morning. The challenge for us is working on strategies and practical options that make these easier for him but also for us as a family.

One never got burnt looking on the bright side of life.

Peace be to you and yours - Darren

Well happy April 2007 folks, this last year has flown as it is coming up to one whole year since Elijah was diagnosed with Angelman Syndrome. What a year it's been for us! a year of grief, challenge, some steep learning curves, lots of joy, heaps of hope. We Julie and I are finding our selves needing to continually educate ourselves about Angelman Syndrome, genetics, neurology seizures related matters. There is just so much to learn, and take in and understand and also to act as a catalyst to help educate others. The Listserv for angleman syndrome and the angelman forum (http://www.angelmanforum.org/ ) have helped us a long way in this. We have found ourselves in dialog and discussion from folks across the globe and better able to dialog with Elijah's medical specialists. Still along way to go, but blessed by every minute of it, even the tough ones and there are plenty of them to go around.

NEWS - A new car seat is on order and will be here in 5 weeks - Elijah is too big for the one he has been using - was originally his sister Francesca - this one is being obtained through his Early intervention team - is more difficult for him to houdinise. Also a walker to help Elijah and a new buggy - with him in mind (cause he is getting quite heavy now) and a high chair that is better suited to his needs - again so that he can not houdinise it.

Bed - well we have just taken deliver of some plans for a bed generrously supplied by Walter Smyth who lives in Exeter - NH - he designed and built the bed for Nicholas Swanton - see the following link http://www.seacoastonline.com/2005news/exeter/09232005/news/64442.htm
he has generously sent us the plans and we have a contact in a local technical institute who is a tutor of building and carpentry who is going to look at the plans and see if they would make it for Elijah - this could be at no cost to ourselves. Wooohoooo wouldn't that be great - must fly

until next time - take care Darren

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...

well I have to confess that this week has been a quiet one - Elijah has only been awake once during the week - One of the things I haven't mentioned is that Elijah features in the calendar of angels that was produced before Christmas - and also there is mention of this blog. Daniel another local angel also has his birthday in the same month - February and hi picture just about next door this was a great project and the Calendar are just fab. It's great to see the name of angels that appear on the angelman forum or on the listserve.

In December Tobias, Elijah Markus and Elijah attended a Special Children's Christmas Party. This is sponsored by a number of local radio stations and a finance company. It is a huge party held for children with special needs - there was fresh fruit, juice icecream facepainting bouncy castle entertainment , even Father Christmas and presents for all those attending, here are some photos from the Christmas party - better late than never.

Elijah's Face Painting

Elijah and a pirate


Elijah and his computer gift

Tobias and Elijah enjoy bananas