Elijah's Christmas Wish

I've been meaning to say Merry Christmas to all for a little while now but I've been caught up in decking the halls and holiday cheer, slipping right into that good ol' holiday feelin' of sunshine, swimming and non-stop eating.  We've had a great time so far, we've had a few really good days with fatty Elijah and amazingly he has even slept through the night twice in the last two weeks, I would say.  There is hope yet!  But seriously now, I would like to say a big MERRY CHRISTMAS from the Barnard family, we can't thank you enough for all the prayer and support we've received over the past year, it's been truly touching.  So much so it almost feels ridiculous that I'm about to ask a favour from the people that have already done so much! 

During Elijah's stay in hospital Elijah had between 4 and 7 life saving blood transfusions!  The reason I say between 4 and 7 is because we're not sure of the exact number.  We know of 4 definites but his 'beads of courage' tell us he's had 7 so to cover all basses we'll just say 7, plus 7's a good number, haha.  There is no doubt that Elijah wouldn't have made it through the lengthily operations without the generosity of a kind stranger donating their supply of blood.  I remember when we were first in hospital talking about doing the first debulking and thinking how is Elijah's body going to get through a huge operation when he can't even sit up or roll over now?  And the truth is he wouldn't have without the transfusion.  If any of you had seen him at the time you would understand, it was a real nerve wrecking time.  I've added in some old photos of Elijah from that time, just after his first debulking operation back in July so you can see what he looked like back then.

So something I've always wanted to do, even before our hospital days, and have never got around to actually doing is donating my blood and I thought, since it's something I've been meaning to do then maybe there are other people out there who've been meaning to do it too or would be prepared to do it too, if I asked.

 

So to put it plainly this year Elijah's Christmas wish is that 7 or more people would donate their blood to a blood bank on behalf of Elijah Barnard by the 28th of January 2010, a month from today.  The great thing about this Christmas present is that it doesn't cost anything and it could even save, not just one, but THREE  lives!  There are so many horrible things happening around the world and one of them is sick children and adults having to spend the Christmas holidays in hospital.  Please don't forget about them, as it easily could have been us!  If it's something you've considered doing before but just haven't got around to it then don't put it off again, just do it and then give me an e-mail - eleanor_barnard@hotmail.com - so I can add you to my list to see how many people we can get to donate blood.  

PS.  There are blood donor centres throughout the country and also mobiles collecting from different places this month and next month.  Check out www.nzblood.co.nz (or www.sanbs.org.za if you're from SA) to find out if you are eligible to give blood and for further information.

PPS. Happy New Year. 

Meet Elijah's Hickman Line

The other day I heard Steve comment to someone that these days Elijah has more good days than bad.  The switch must have snuck up on me and over taken the bad days without me even realising it because it took me a moment to think, process and agree that yes, in fact Elijah's days are mostly good now and good days with Elijah are great!  Nights on the other hand are another story!  For the first time the other night since hospital (which was over 2 months ago now) Elijah only woke up once during the night.  He took another 2 hours to go back to sleep that time, which is unusual, but the point is he only woke once!  An average night would be 5 times and other times on the hour.  It's unpredictable, always changing and tiring but makes for good conversation, ha ha.  I have to tell you this story....

OK, let me set the scene just quickly.  The curtains in our house are really thick so when it's night time it's pitch black and it's for this reason, no laughing yet please, that we have a night light in our room, and a night light in the hallway so when we get up during the night there's no fumbling around in the dark, OK.  So, the other night when I got up to Elijah, I was real tired and still half asleep, like usual.  I went into bubs room, checked he was OK, rolled him over, put the dummy in his mouth and he went back to sleep.  When I came out of his room I noticed that it was pitch black and that I couldn't see anything.  As I neared the corner into our room, I could see again and I was like, Oh my gosh!  I must have had my eyes closed without knowing it!  Ha ha, I couldn't believe I was practically sleep walking around the house but then as I neared our bed and saw the flashing clock/radio on 12:00 I realised that there had just been a power cut from the time I'd gone into Elijah's room to the time I'd walked back around the corner.  Silly, tired me.

You might remember one huge problem we had with Elijah in hospital was his constipation due to all the antibiotics and morphine he had combined with other contributing factors.  Well I'm happy to announce that this is finally not a problem for Elijah any more!  I think this is real proof that his body is starting to really recover from his stint in hospital.  So that's 2 meds that he doesn't have to take any more and I'll pass on this handy tip if anyone has a littlie that may need a little help now and then in this department.  Golden kumara (sweet potato) and brown sugar (not together) really do work wonders, the best advise our Oncologist has given us.  Another interesting thing I wanted to mention was Elijah's finger nails (and toe nails) after we left hospital you could see them grow out as they had a line across the nail that separated the new, normal nail and the old nail which was marked by all the drugs and was raised and yellow.  The nails on Elijah's right side have finally grown out leaving normal nails behind but the nails on his left side have grown out half as slow and are still showing about 1/4 of the old nail.  I was going to photograph them to illustrate what I'm talking about but his finger nails are still so tiny!  I think this proves that Elijah's whole left side of his body functions are undoubtedly slower/worse than his right and with Elijah still not crawling or walking it could take a lot more time and therapy than we think until Elijah is up and about.

Another thing that is really holding Elijah back is his Hickman Line. 

 Meet Elijah's Hickman Line.

He has had this in for about 3 months now, it was put in under anesthetic when he was in intensive care because they couldn't get any other lines into his veins.  This is a permanent port that is usually used for chemotherapy.  Elijah is on the waiting list to have it removed as he has to be under anesthetic again and no longer needs it at this stage.  I was really hoping it'd be out by Christmas but that is very unlikely now.  Although it was a life saver when we were in hospital as he can have all his medications through it and they can take blood samples straight from it, it's now just a huge pain in the behind!  We are advised against bathing with it and swimming is a big no no.  It's a shame as bath time used to be the highlight of his day.  If you have any spare prayers for Elijah to get this line out as soon as possible would be great, thanks.

Well I think that's enough for one post but stay posted as I have a Christmas wish on behalf of Elijah that I'll write about soon.  Thanks for reading.   

A Closer Look

12/7/2009 First MRI shows tumour in mid tone gray (boxing glove/mitten shape) in centre of brain.

15/9/2009 MRI after final debulking shows resection as black (fluid) in the centre.

12/7/2009 First MRI shows tumour as a white mass in the centre at a 'birds eye view.'

15/9/2009 MRI after final debulking shows re-section/fluid in black at a 'birds eye view.'

My Elijah

Summer Strawberries

Plum One, Plum Two, Plum Three.

Baby In A Basket

Pleasant = Sanity!

My apologies on my blog absence, I've been busy.  Like really really busy.  And I must warn you I'm pretty unreliable these days!  So if I say something like I'll write in a couple of days or I'm going to phone you or do this or that then you can guarantee I might only 2 or 3 weeks later or, on the other hand, I might not.  I'm trying not to make a habit of it but I'm a list person and since Elijah and housework are at the top of my list not much else gets done.  And it also seems like the busier I get the more tangled up my thoughts get which, in turn, means the more daunting a task it seems to untangle them into some kind of straight line!  (Which reveals the true reason for my blog absence.)  But I'm sure the point of this blog was to talk about Elijah and not myself!  Ha, I'm sure...

Anyway, so - my precious Elijah.  You've all heard the confirmation that the tumour hasn't grown back between the two MRI's.  I'm still unable to put into words how this makes me feel.  Disbelief, I guess.  I guess it may take a couple of years worth of these MRI's before I can relax or have any certainty of Elijah's future - or maybe that's something we'll never have.  At least for now we get to keep him for a little longer.

We've had a few seesaw weeks with Elijah and his sodium levels.  We thought we were doing alright until a blood test revealed his sodium levels were the lowest they've ever been, really low!  (121 if you know anything about them.)  Which means increased risk of seizures or coma.  He was just very grumpy and sleepy though.  So we decided to up the anti to get on top of this daily struggle; blood tests in Thames three times a week (once a day would be better but that'll be too much driving,) as well as recording all fluid intake and output (weighing nappies) to keep fluids as balanced as possible.  Since then Elijah seems to be doing a lot better and just way happier in general, which may also have something to do with his new supplements that arrived from South Africa as we are now working with a naturopath there and also the 3 Elijah's prayer meeting we attended a week and a half ago where we lifted up (not literally) the 3 Elijah's in prayer, in what I like to call, chaotic harmony to the ONE TRUE GOD.

Elijah has also improved in other areas too... eating, sitting, rolling, verbalising more eg. dada but more dada as a sound than a purposeful name.  His interaction with us and seeing his little personality start to develop is the best thing of all.  He loves touching, scratching, cuddles and kisses and is very affectionate and gentle most of the time.  (Except for the occasional bite, sorry Bex!)  He may be far from normal but he's getting closer to pleasant and pleasant = Sanity!

That's all I have time for at the moment but keep an eye out for some seriously cute photos of Elijah and possibly some of his scans coming your way. 

What Never Changes

I came across this song which sums up for me something I've thought a lot about lately.  That is how we live in a world that is constantly changing with bad things happening but God is always the same good God, he never changes and his mercies endure forever.

What Never Changes

I've seen things along the way,

I've seen some trouble in my short days.

Through it all, I have no fear.

See, I had a friend who was always near.

And if the sun were to fall,

if the oceans were to dry.

If the mountains were to crumble,

I wouldn't bat an eye.

For I stand upon the Rock,

the Rock of Ages.

No matter what may come,

What storm around me rages,

I stand upon what never changes.

Sometimes the way looks bleak,

Cause we're just human, and we are weak.

Take it from me,

If the road gets rough

He'll be there to pick you up.

And if the sun were to fall

If the oceans were to dry.

If the mountains were to crumble

I wouldn't bat an eye.

I stand upon the Rock

He's the Rock of all the Ages.

No matter what may come

What storm around me rages,

I stand upon what never changes.

Thank you to the tax payer

As we sat in the waiting room of the University MRI awaiting our fate.  Nerves fluttered but only briefly.  Accross the room a Fijian couple sat with their young boy who aparently had hydrocephalus, they were first for the day and late at that.  "Couldn't find a place to park,"  he said.  Strange, I thought, being their apointment was 7:15 am, so early in the day.  But we're used to waiting and we soon made friends with them quickly confirming my belief that Fijian's are by far the friendliest people in the world.  They openly shared their gratitude at getting a last minute appointment due to a cancelation and were handed a bill on their way out.  I asked if I could have a look.  $2 750 I was speechless.  I wanted to ask if they had enough money to pay for it, how could they pay for it?  But I just grimaced and shook my head as she smiled and walked out.  I have lost count of Elijah's MRI's, CT scans, you know, not to mention the 38hours of brain sergery and everything else and not one cent we've had to pay for.  It's just not right.  I feel a humbling sense of gratitude when I think about where we'd be if people didn't pay their taxes.  I often think about people who feel like they aren't contributing to our situation or they ask us if there's anything they can do, just pay your taxes I should say to them.  That is more than you could imagine.   

Next in line after us was a 6 year old boy with his mum.  We briefly share stories of why we're here and then wonder why we had to satisfy our curiosity only to find out another sad story.  Two children with Autism, the second with possible other brain problems,  like one wasn't enough.  

Anyway, once the MRI (45 minutes under anaesthetic) was done, Elijah slept while we took him up to level 7 in Starship, the Oncology (cancer) ward.  We were given a bed in 'day stay' where he slept and woke up with a smile for dad.  We fed him without any vomits or anything, a great recovery for Elijah, we were stoked and relieved and then the waiting begun....

To cut a long story short the waiting still continues as a series of unfortunate events unfolded from Wednesday onwards.  First the report from the radiologists took days rather than hours and then after having to go back to Starship on Thursday to get Elijah's shunt dial adjusted (after it got moved with the MRI) I decided to stay on in Auckland at Mum's while Steve drove to Whakatane to spend some time with his dad.  By this time my phone had gone flat and they were unable to reach Steve on his phone and since the Oncologist doesn't work on the weekends we are holding out for Monday for the formal report.

When I was in Starship on Thursday I spoke to Simon the surgeon who had had a look at the scans and I'm pretty sure he said "It looks like the tumour hasn't grown back like it did the other times but you'll have to wait for the radiology report."  This could be interpreted different ways but either way it's in the good news category!  I guess I'm still in a bit of disbelief untill I get that confirmation.

Well, that's all from me for now.  Since I'm at mum's I don't have any photos to pass on, sorry about that.  I know he is the cutest baby in the world and lights up your life when you see that smile but you'll just have to wait till I get home.  Elijah has had a great day, just by the way, a great great day.  Pretty grumpy before that with his yo-yo sodiums but I think he has come right for the moment.    

Thank the Lord.

This is not an invite.

I feel exhausted.  It's hard to know on the scale of difficulty where Elijah would be had he been a normal 1 year old but I would place him somewhere around the 8 mark in general.  I know looking after children is supposed to be hard work but boy, this is hard.  It's hard to tell if it's because Elijah really is such hard work or if it's because we both haven't yet recovered from an emotional battering.

This is definitely not and invitation to a pity party mind you, so don't get any such ideas. We had a pretty good weekend actually with a constant flow of friends and family to enjoy the sunshine with.  Elijah was in a particularly sunny mood on Saturday but back to his usual self all the other days in between.  His usual self being a mixture of happy/sad, smiles/screams, ups/downs and waking countless times during the night.  One minute he's happy and the next minute we're measuring out 7mls of Paracare because we've tried everything else.   

His sodium's were very low when we went to our Clinic appointment on Wednesday so we've been concentrating on getting his sodium's up but we've nothing at home that can magically tell us his sodium levels so we're left guessing and hoping we haven't let them get too high.  We are starting to think his bad moods are correlating with the fluctuating sodium levels in his body... if only he could speak. 

On a positive note he has become more regular over the last week which is a relief... quite literally.  He is also still eating/drinking really well and starting to eat chunkier foods (not quite up to where he should be for his age... but look out you other one year olds, Elijah's an eating machine!)  I'm happy to report Elijah ate (and actually chewed rather than gulped) pancakes (my favorite!) potato salad and some orange, that's my boy:)

"Here's my little cheeky monkey having a swing in the sun:)"

It's now 9 O'clock and I'm feeling tired all of a sudden.  I'll go before my brain slows down too much and I'm left blinking into the screen (ah, too late actually.)  My next blog will be up-dating you on how the Wednesday's MRI goes but don't be expecting it Wednesday night or anything... lets hope I'll have some good news.

Well good night to all and to all a good night.  

A day to remember.

What a difference a day makes... and a better nights sleep.  I wanted to write about Sunday as quickly as possible before it was tainted with anything other than perfect but it's too late.  I'll still tell you of our blissful Sunday though as it feels much as if I'm sharing food with the hungry.  Sunday, Sunday, Sunday... was the first day that Elijah didn't cry the whole day!  It was also the first day that Steve and I felt remotely like a "family."  Could we even say.... a happy family?  No, it's much too early for happy families but the glimmer of hope was there.  

Elijah was just full of smiles all day, the sun was shinning, the birds were chirping, we were home and it was magical.  Steve took his shirt off and worked outside in the vege garden and couldn't stop talking about how happy Elijah was.  I have to quote him this quote... With so many things going on with Elijah all the time it's hard to know what is wrong and what is right but the only real difference we've been doing with him is feeding him a bottle before and after his meals instead of just after.  So it's possible he wasn't getting enough fluids which was causing his sodium levels to be too high which could've been making him grumpy all the time and we haven't been able to get his blood tested lately to see what his sodium levels are doing so it's been a bit of guess work.  

"Seeing Elijah happy is like a drug for me, it shoots my serotonin levels through the roof!"

Steve's been doing a bit of research on home testing blood salt levels... like how diabetics test their blood sugar levels... it's gotta be possible, it would make it a lot easier that's for sure... anyone heard of one?  

Anyway, here are two beautiful photos of our boy doing so well.  'The morning after photos' I call

them, just as he finished his big bowl of porridge, still in a great mood:)

Introduction

Hi, Steve and I have decided to keep a Blog to document Elijah's journey now we are back at home as we know many people out there have been following Elijah's journey through Grandad Jules's much needed and appriciated e-mails.  As a result of those e-mails and the feedback we've recieved from them we feel comforted knowing we have an extended family of believers behind us every step of the way.

As most people visiting this blog will already know Elijah's story I won't talk of how we've got to this point but, instead, how things are going with all of us now and we'll keep you updated on Elijah as we go.  So thank you for sharing in our pain and prayers.  Only God knows where we'll go from here.