30 Jan 2010

Hi All,

just a quick update, there's not a whole heap to report on this post but I wanted to just post an update so you know we're still alive...

Elijah is doing really well, we seem to be heading to the hospital less and less. Although, we are over there twice next week... This is to have his ears cleaned out.

Ever since having the grommets put in he has had loads of gunk coming out his ears. So he went in for a check up 2 weeks ago and had them cleaned out real good and he was put on some ear drops to keep them clean but even so we've still had to have him back to the hospital a bit just to keep them nice and clean or else they get infected. With all that said his ears seem to be clearing up and he is getting used to wearing his hearing aids again...

At the moment we are getting all our stuff packed up and ready to put into storage for our time over at Great Barrier. We are going to be heading off towards the end of Feb.

We are having to take over boxes and boxes of medical gear so thats gonna be interesting...haha

We usually order his medical stuff once a month and even then there's heaps of crap to store in our house but now we have to order about 4 moths worth for our time over at the Barrier cause we cant order it over there...

At this stage it looks like just Elijahs stuff is gonna take up a full van!

Other than that we have been keeping really busy playing around the place with a number of different people.

2 weekends ago Josh was playing with Jeremy and Conney Sinnot from Toronto Airport Church in Hamilton, from there we headed straight over to Tauranga where he was playing with Cindy Ruakere at the YWAM jubilee celebration. This was an awesome weekend, we got to meet Loren Cuningham (founder of YWAM) John Dawson (Current President of YWAM) and a whole heap of other 'greats' in the kingdom... We also got to catch up with David and Dale Garratt and we got to know some really cool people who we know we are going to have a heap more to do with in the future!

After the weekend jubilee was over it flowed into the Call2All conference. Josh was playing every morning and at the opening for Cindy. We had a stall set up for InFlame Worship School. So we had a lot to do and we were absolutely stuffed afterwards...

We got home late Friday night from this conference and saturday arvo Josh had to head up to Auckland where he was playing for a guy named Sean Feucht. He is a worship leader from the states and has a ministry called burn 24/7 (http://burn24-7.com/). Josh was up in Auckland Saturday night and Sunday morning then they were playing at a church in Hamilton on Sunday night... After all this he was finally able to come home.

But not for long as this last week he has been teaching in Hamilton at the In-Tune workshop at Vision College. Now that this is finished we feel like we are starting to recover from an intense few weeks!

Elijah is a little legend with all of this. He is so amazingly patient with us and will just go along with all the long car ride and meetings quite happily... He lets us know when hes had enough but thats usually well after we are over it ourselves! hahaha.

We love hearing from you all so if you have any questions please just flick us an email or even call!

God Bless,

Josh, Ambz and Elijah!

Pictures

Hey guys, I have managed to upload some pics... you'll see a few of them on the left of your screen there. below them is a link to our 'flickr' account with photos of Elijahs first 18 months with us.

You can see the groups;

in the beginning

1-2 months

3-4 months

the first year home

And we'll post all recent photos to there as well in the future... We'll let you know when we do.

God Bless,

J, A & E

13th Jan 2010

Hi everyone,
sorry it has been so loooong since we have sent out an update re Elijah. Thanks so much for all the prayer that has been offered on his behalf and on ours... It has done more than you know!
We have no excuse for our huge gap in post's, I have been asked by a number of people to blog or update on the old website that we used while Elijah was in hospital and finally tonight I have got around to sorting out this blog which we are going to regularly update with new of Elijah and what we're doing... As you'll see I have included all the original updates from 2008 below f or those of you who would like to read them.

I thought I would just bring you up to speed with what's happened over the last wee while with Elijah...
We just got back from hospital today from whats become a routine theatre trip, where he (Elijah) goes to theatre, they knock him out and check how his airway/throat is looking etc.
He has these check up about every 3 months... At the last check up (on the 2nd of Dec 09) he had grommits put in, they were changed again today cause they were full of gunk and were pretty much totally blocked up... So he had his ears cleaned out and now he looks a lot more comfortable.
They also found a cyst in the back of his throat mid way through last year and he has been on a medication to shrink that for about a month now. They checked it in December last year to make sure it wasnt cancerous at all... And its not.
They had another look at it today to see if the medication is working and the surgeon said that she thought it was slightly smaller - this is a good thing cause the more you deal with surgeons the more you realize they are not wishful thinkers, nor are they very optimistic... And from looking at the photos that they took in theater, we reckon it looks smaller too... Either way, his eating has definitely improved, which is a huge thing!

He still has the trachy in to help him breathe so if your wanting something to address in prayer this would have to be priority number 1! We want this flippen thing out! haha... Its a real hassle at the best of times and its the thing that takes the most energy/effort/patience to deal with... So in order for that to come out, his throat needs to open up so he can breathe clearly with out the trachy tube.

All in all he is doing awesome. He is walking around when we hold his hands and balance him (he looks slightly drunk but so do most of us at the best of times...) And he is getting more and more active every day.

He had heart surgery up at Starship midway through last year. This went extremely well. We've noticed some great improvements since - like the fact that he now sleeps more than 4 hours at night! I will try make some picture available on here of our time at starship.

I think that'll do it for now and I'll add more of the last years history over the next few post's. If you want to get in touch feel free to flick us an email anytime. Below I have written a list of the current issues that Elijah needs healed, so take your pick and go for gold!
Sorry again for the slack contact with all of you who have been so loyal in prayer for us... We'll be keeping you well informed from here on out...

Healing needs:
-facial paralysis on the right side of his face
-deafness in both ears
-throat needs to open out;specifically, the cyst needs to disappear, larynx needs to be strong and of normal size, vocal chords need full movement.
-nostrils need to be opened up; skin currently blocks 95% of his nostrils(he needs these patent for his trachy to come out)
-for there to be no ongoing heart problems whatsoever
-that he would walk and crawl soon

Update #6, 9th Sept 08

Every law of nature must yield to faith... Only Believe...

Well a lot has happened since the last update...

He was taken to theater on the 2nd of september and had his Tracheostomy done. The operation went really well and he has been a whole new baby boy ever since! Its seems to us that ever since he has been able to breathe comfortably everything else that we thought we were gonna have to worry about has just faded away... He is so much more happy and loves to be cuddled and is very very alert!

He went back to theater today (9th sept) because he had to have the first change of the tube in his throat done in theater. From here on we are allowed to start changing the tube ourselves as we have to learn how to do it before we leave for home... And its our understanding that we will have to take him into theater about once every 4 to 6 weeks to have it looked at again because as he grows the tube will need to get bigger also...

We saw another photo from the surgeon today that she took with her tiny camera of his larynx and vocal chords and they are looking a lot better than they were... His larynx is looking a lot smaller and it looks a lot less inflamed and we can actually see a passage through there now. In the last photo you could hardly see a clear path through for the oxygen to travel, so already with a bit of pressure taken off his throat his body is getting sorted out.

So from here we will get him feeding and once we are confidant with changing the tube we are outs there! In a weird kinda way we have really enjoyed our time at the hospital, we have meet an awesome bunch of people who we will no doubt keep in touch with for years to come and even though the reason we are at the hospital is really hard the time there has been a time in our life which we have come to value, we have to been opened up to world that we never knew existed.

Thanks again for all your prayers and love. Gods hand has been on everything. Please continue to pray for the following;

- firstly that he would breast feed well and do so quickly

- secondly, that his airway would continue to open up in his throat and that full movement would be restored to his vocal chord so that the tracheostomy would be out and he would be breathing normally within a couple of months!

p.s if you would like to see some pics, check out Amberley's facebook page, she has the most recent ones there... I will load some more up on the website soon for those of you without facebook...

Thanks so much,

God bless,

Josh, Ambz & Elijah

Update #5, 27th Aug 08

God is Good; one of the few impossibilities we have is that we cant exaggerate how good He is, but he takes pleasure in us actively trying...

Hi Everyone,

Sorry the updates have been so few a far between.... I have finally uploaded some pictures, we have had a long couple of days and have now taken a night off to chill out and relax...

As for what's happening with Elijah, its been a roller-coaster of a week. Firstly, the stents are out! its been 5 weeks with those things in and they are finally out! When they pulled them out they tried to put him on a thing called CPAP (pronounced 'see-pap'), which has 2 little prongs that stick up his nose and help him breathe but he wasn't happy with it at all so they put him on another type of breathing support called 'high flow'. This is just the classic plastic tubes in the nose that you see on people on TV when they're in hospital etc... So he was put on that on tuesday the 26th of Aug when his stents came out, he was pretty happy on that so they moved us from nursery 2 to nursery 3 which is what they do when babies are improving and don't need as much breathing support, so we were stoked about that. Then on the 27th he started finding a bit hard to breathe and during the day he had a bit of an upset moment which he found it really hard to recover from then he had another unhappy time at night, both were brought on by having his nose suctioned which is really annoying for him but has to be done, so if you can imagine a thin plastic tube being stuck down your nose to the back of your throat and then sucking as it is pulled out... So that set him off on wednesday and then he doesn't like having dirty nappies either so that would kinda add to his already frustrated outburst, so when we left on wednesday night at midnight he was looking really white, sweating heaps and just looked really uncomfortable. He also couldn't get into a good sleep cause he has a strider, which is a noise that he makes when breathing in, it happens because the air has to be sucked through a smaller than usual hole to get to his lungs which in turn cause a gasping kind-of-a noise, so he progressively got worse over the night until the nurses where going to put him back on a ventilator but instead put him back on CPAP which is a lot better because a ventilator is the last thing you wanna be on... So they put him back on that and then put him back in nursery 2... And now they have changed the CPAP to a tube that is running down one of his nostrils to the back of his throat and he likes this a lot more than the double prong option...

So after a long day and night he has calmed right down and is breathing comfortably with the help of the CPAP and he is a nice color again and is sleeping soundly because when he is calm the strider doesn't happen, that only happens when he is worked up which is also the time when he needs more oxygen.

So with that being the problem the docs talked to us today about a tracheostomy. this is an operation in which they place a small tube into his airway and it comes out a hole in the front of his throat. At first this option freaked us out and we both thought no way! but after they talked to us today and explained everything we now know that it is no where near as bad as what we thought. It will mean that we will get home quicker and he will be way more comfortable also. It will also mean that there will be a few extra cares involved when we are home.

Its unknown how long it will have to be in for but at a guess it would be safe to say anything from a year to 18 months. We just have to wait for him to grow so that everything opens up a bit, its not so much his airway that needs to get bigger but its everything at the top of his airway.

So we have until monday to make a decision on that and if we decide to do it he will go to theater on Tuesday. At this stage unless his situation drastically changes we will be forced to go with it because it would be the best thing for him.

We are still praying for and believing for Jesus to totally heal our boy. So please join with us in praying for our boy to be healed by monday and home quick smart. And please also pray that if it comes to getting the operation that everything would go smoothly and that we would be outa there soon after the op.

Also continue to pray his heart is totally healed so that he wouldn't need on operation to fix that and pray that he grows and puts on weight fast...

So heres the list;

- Healing on his ability to breathe, that he would be able to breathe 100% on his on perfectly

- Healing in his heart, that it would be made totally normal and that he wouldn't need an operation

- If he gets the operation for the tracheostomy that all goes well and that he would be comfortable

- That he gains weight and grows fast, that his throat, voice box and airway all grow fast

- And finally that we would be home quick!

Thanks so much to all of you for your prayers, love and financial support. Throughout this whole ordeal we haven't had to concern ourselves with anything but our son, it has been amazing how many people have actively supported us and taken some of the burden with us. Thank you all again, we wish there was someway that we could actively return the love shown to us.

We'll continue to keep you updated and please feel free to pop up to the hospital and visit us.

God bless,

Josh, Amberley and Elijah

Update #4, 6th Aug 08

God has shown us that He is fact and everything else is assumption! - Josh Klink
Well it has been an interesting last few days... We got back from Auckland on the 1st of August. The Doctor sat us down that night and told us a whole heap of bad news that we didnt want to hear at all, but again alot of it was just worst case senario kinda stuff... Elijah on the other hand is looking good. He is breathing well and is now going to be learning how to breast feed.

So when he is comfortable with feeding we will be more or less able to go home... The Stents that are in his nose are booked in to come out on the 26th of August. It looks like we will be in hospital till at least then because they need to be suctioned out quite often and if they're not then he cant breath well. So all going to plan, his stents will come out on the 26th and he will be feeding well so we will be off home with our Son!!! But the ENT specialist says that when they take the stents out they have to have a look inside his nose and make sure everythings 'ok' then he is right to come home, there is the chance in their mind that the stents might need to go back in again for a couple more weeks, which would mean that we could be at the hospital for longer again... But God is good and that is what we are relying on cause as we have come to realize over this last few weeks that is the only thing that you can rely on.

He is booked in for an M.R.I scan on friday for further checks on his brain.... They're really persistant with trying to find something wrong... We know nothings wrong but hey, some people take a bit longer to catch the bus than others... Especially when faith is involved...

So the lastest prayer needs are;

That he would breast feed well and quickly.

That the stents would come out and stay out on the 26th.

Keep praying that his heart would be totally healed and that his sight and hearing would be 100%... They havent found anything wrong with his hearing but with what they think he has they do suspect it...

We have decided that we are just going to love our son to life... Which we know is a revelation from God because we were reminded today that faith works through love and as we sit there each day looking at our boy, loving him completely, its so easy to rest in that peace that God has for us, knowing that its all in His hands.

We sing and read about faith that moves mountains, but until you have stood and looked at a mountain and comanded it to move you dont truely understand how crazy Jesus is in saying that... We are standing comanding this mountain to move and its here that we see how truely good our God is! The so called mountain that we are facing at the moment looks like a mere dot when we keep our focus on Him rather than on this world!

Thanks for all the love and support,

God Bless,

Josh, Amberley and Elijah

Update #3, 28th July 08

Hi everyone, here is the update thus far...

We are at Starship Hospital in Auckland now and have been here since the 25th. They sent him up here because after a day of having his breathing tube out he was having a bit of trouble breathing... Its wasnt that he couldnt breath, it was just that it was hard for him because of the little stents up his nose, when they got a bit of snot in them it made it hard for him to breath and they were worried that it may be putting to much strain on his heart... So we got up here and the have found a number of interesting additions to the whole drama to date... What they thought he had at Waikato it turns out he doesnt actually have that particular contion, he has one that is simillar but different... It is called a Trelodgy of Fellot. It means that he has a hole between the bottom two chambers of his heart and the artery which is taking the blood out of the heart is slightly congested. Plus the ductus which is above his heart that is ment to shut at birth is still open. So that leaves us with the following problem:

When the blood pumps through the heart it is leaving through the normal process but because of the hole alot of the blood is leaving through the artery which leads to the lungs. There are two arteries leaving the heart, one that takes blood to the lungs and one that takes blood to the body. So with that hole in the bottom of his heart alot of blood is leaving to the lungs. Also the ductus that hasnt shut is between these two arteries leaving his heart and what it is doing at the moment is also taking some of the blood out of the artery leading to the body and putting it into the one going to the lungs... So what can happen is to much blood can go to his lungs and make it hard for him to breath. And his body will be asking for more blood to be pumped to it so his heart will get the signal to pump harder and then the blood instead of getting sent to the body get redirrected to the lungs and so on... So its a bit of a nasty cycle BUT he is doing really good at the moment and they are about to take him in for an oppereation today at 2pm to shut that ductus so less blood will be channeled to the heart.

They will monitor him after today to see hwo he gets on because if possible they dont want to opperate on the hole untill he is about 6 months old, just so that the heart is a bit bigger... But by then with the amount of prayer happening for him he should be well and truely healed!

So that is the latest so please praye that today goes well and that his recovery from it is quick and smooth and problem free....

Thanks again,

Josh & Ambz

Update #2, 23rd July 08

Well I dont really know where to begin on this one, so much has happened in the last few days....

So I'll keep it brief and try to remember everything...

The doctor had to check Elijahs heart on Monday the 21st because the specialist was back from holiday and had him booked in for surgery on the Tuesday (the 22nd). After checking his heart they found he had something called Double Outlet Right Ventricle. (just google it if you wanna know what it means...) So they were unsure if the anesthetist would go ahead with everything... At about 10pm Monday night we found out they were gonna go ahead with the operation! So Tuesday morning off he went to theater at about 11am. 1:30 came around and the specialist was happy with how everything went and he was back in I C U under some heavy sedation. At about 7pm that night he started bleeding from his nose, which the docs were not expecting. The specialist came back in at about 9pm and checked it out, they took him back to theater and re-operated to take out the 'stents' they had put in earlier and seal up the puncture in his nose and then put the 'stents' back in!

So at 1:30am Wednesday he was out for the second time, this time he looked a bit stunned at what had gone on. Today (23rd), however, he looked a lot better and they are going to remove the respirator from his mouth tonight so that he will be breathing all on his own again. From here, the stents that hold his air way open are in for 5 weeks and it is possible that we will have to remain in hospital for that whole time at the end of which they operate again to remove them.

The heart condition is one that would need to be fixed up at Starship in Auckland, so they have said to get his nose all sorted out and then after that we will head to Auckland for the Docs up there to have a closer look at his heart... Its not something that needs to be fixed immediately but they have said that it does need to be fixed in the next several months or so...

We are believing he is totally healed of the heart condition, so please pray and believe with us in this.

Thanks again for all the prayers and support,

God Bless,

Josh, Amberley & Elijah

Update #1, 14th July 08

Thanks again for all the prayer for our little son.

Today we had a bit of a scare... The Doctor came in and told us that he had been twitching all morning and he suspected it was brain damage... Not exactly the thing you want to hear first thing in the morning...

So the doc hooked Elijah upto the brain monitor again and a few hours latter told us he couldnt see anything wrong... Funny that!

We are waiting for the specialist to come in becuase they have found that Elijah has something blocking his nasle passages, it could either be skin or bone... Either way they said it is not a major to fix but that would have been the reason that he could not breath at birth... So, the specialist which was ment to come in today we have now found out is on holidays until next monday..... So they have put Elijah's name down at Starship in Auckland and if there are any openings there he will put moved up there but if nothing comes up, we will be just hangin out till monday... But! We are still praying and believing that God heals! So we most likely wont even need any specialist at all...

So after getting told all that and dealing with it all, we came back into the room to be told that Amberley could finally hold here baby boy!!!!!!! Basically, everything we were just told faded away and was forgotten as our precious little boy lay peacefully in his mothers arms. For the hour and a bit that he lay there the world and its problems were as far away as they could be and everything just seemed to stop as we had our moment with our son that we had been aching for, for what seems like forever...

So the latest to pray for is;

Obviously that God will do the operation that Elijah needs
And that if it comes to surgery, that God would get Elijah to exactly the right Specialist that He knows to be best for us.

Thanks again to you all, it means so much to us that we have so many people helping us on...

God Bless,

Josh, Amberley & ELIJAH aka The Man!

An overview of what happened at the birth

Elijah Joshua Klinkenberg started to show signs of coming early on the 8th of July and by 4pm we were headed to the birthing clinic in Morinsville. The birth went smoothly and at 9:58pm little Elijah popped on out. This is where the problem started, he came out and was looking around, eyes open and active but didnt want to take his first breath. After a bit of ruffing up he still wasnt breathing so then the mid-wife jumped into action (if it wasnt for her, Elijah may not be here today) with in minutes a number of mid-wives were in the room assisting with treating Elijah, they were hand pumping oxygen into him, forcing him to breathe whilst doing CPR on him.

20 minutes later an emergency team showed up from Wiakato Hospital to take over. They hooked him up to a respirator and prepared him to be put in an incubator. Once he was put into the incubator they loaded him into the ambulance and had him on the way to the hospital at about 12pm.

We arrived at Wiakato Hospital at 12:45pm and Elijah was immediately taken to the Intensive Care Unit. Amberley was taken up to a bed and had a go at getting some sleep....

The Doctors had Elijah all hooked up to different things almost instantly and were monitoring his heart, kidneys, lungs and brain.

The Doc wants to leave him hooked up and sedated for 72 hours which will take us through to midnight Friday, then they will start removing tubes and begin him breast feeding.

He is doing really well, there is absolutely no sign of any problem at all. He is soaked in prayer and is being well looked after.