Monday, April 30, 2007

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


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

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
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

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

Wednesday, April 18, 2007

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

Tuesday, April 17, 2007

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

Friday, April 13, 2007

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

Saturday, April 07, 2007

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

Thursday, April 05, 2007

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 ( ) 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
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