Friday, December 28, 2007
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.
Check out a video clip of the Canterbury Angleman Syndrome Family end of year picnic
Tuesday, November 27, 2007
Tuesday, November 13, 2007
Pain nourishes courage. You can't be brave if you've only had wonderful things happen to you. - Mary Tyler Moore
Friday, October 12, 2007
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
Monday, October 08, 2007
Monday, October 01, 2007
Tuesday, September 25, 2007
Sunday, September 23, 2007
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
Wednesday, August 22, 2007
- 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
Saturday, August 11, 2007
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
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.
Tuesday, June 19, 2007
Monday, June 04, 2007
Until next time
Thursday, May 31, 2007
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
Saturday, May 26, 2007
Friday, May 18, 2007
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
Wednesday, May 16, 2007
Friday, May 11, 2007
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
Tuesday, May 08, 2007
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
Thursday, May 03, 2007
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
Monday, April 30, 2007
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
Monday, April 23, 2007
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.
Sunday, April 22, 2007
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
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
Saturday, April 21, 2007
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
Wednesday, April 18, 2007
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
Tuesday, April 17, 2007
Friday, April 13, 2007
Saturday, April 07, 2007
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
Thursday, April 05, 2007
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
Thursday, March 22, 2007
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.
Saturday, February 03, 2007
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...
Tuesday, January 23, 2007
Monday, January 15, 2007
Elijah's Face Painting
Elijah and a pirate
Elijah and his computer gift
Tobias and Elijah enjoy bananas