A new family.. (chapter 3)

For weeks we tried to feed William the proper way - but William never got the hang of it.

For weeks we tried to feed William the proper way – but William never got the hang of it.

On Williams ninth day I talked quite alot with doctors and nurses the way I always do with people that fascinates me, and especially now when I nervously awaited something important – that chromo report – Normally these people gladly answer, but on this particular day everything was different. They knew something that we weren’t supposed to know just yet. So before the good doctor entered the room I was already prepared for something bad.

Later that same afternoon he came, along with some supportive staff (they often do when something difficult is about to be said – this was the first introduction to that type of meeting) and he sat in front of us – this part is quite dim to be honest but part of the talk is clear as a day.

Four of five days old William in my arms.

Four of five days old William in my arms.

Chromosome report showing a very rare disorder, a first for this hospital. He went into detail about numbers of chromosomes and how it worked and what was wrong in Williams case. The disorder didn’t have a name except the technical one but the national board of health and welfare had a webpage dedicated for the disorder for us to read. He had a printout with him that we couldn’t keep. I had time to read a few lines about life expectancy and it said around pre school age. Before he left he said we shouldn’t use Google but only trust the info on the page he suggested.

As this chapter really don't have any images that apply I'll just add some early shots from first week.

As this chapter really don’t have any images that apply I’ll just add some early shots from first week. Photo by Krister Wernerliv.

 

We were stunned. Linn especially, she comes from a very different culture were you are being taught that the norm is the right – everything else is wrong and only a burden to the society. How would she tell her parents? Her friends? What would become of her boy? How soon would he die? Will he suffer? She slowly withdrew into a dark hole. She cried tons and wouldn’t speak anything useful for days.

One of the first shots after William got ready for life without CPAP. You can also see the feeding tube.

One of the first shots after William got ready for life without CPAP. You can also see the feeding tube. Initially he also had a special heater above and below him giving this warmer light.

For those who wonder - yes. Most of these shots are taken with the Sigma SD1.

For those who wonder – yes. Most of these shots are taken with the Sigma SD1.

Found a new family!

The first thing I did was googleing. Soon I discovered rarechromo.org which is exactly what it sounds like.. Rare chromosome organisation also known under the name unique. This was our island in an ocean of dark matter.. (Try a Google for Trisomy and you know what I mean) We soon realized that those other one hundred with the same disorder had collected themselves into a closed Facebook group and that’s were I’ve been digging whenever I’ve had any questions. So instead of being unique as so many of you, William is one out of at least one hundred! That’s something! :D

That’s also where we discovered that Trisomy 9 mosaic adults existed and that gave us hope, hope of a future for our own Bruce Lee.

Now this post will get too large if I cover more ground so I’ll stop here the next episode will include some episodes from the first year. Always feel free to ask anything regarding William and or photography. ;)

Little did I know that my boy would turn out to be super cool! :D

Little did I know that my boy would turn out to be super cool! :D

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In the beginning.. (chapter 2)

This story begins when there were about three months left before giving birth – at this time we went to the maternity clinic every second week as we were closing in for delivery. For three checks in a row they measured Williams length as the same. He didn’t grow but everything else was normal. The nurse said that it was likely just the method of measuring that was at fault and we believed her as it wasn’t the same nurse every time.

Not fully at ease, at least not after that last time – our senses were sharpened for things out of the ordinary and one morning Linn said she couldn’t sleep. The baby hardly moved inside her and she was worried. Early that morning we went in to the big city hospital to get a extra ultra sound done. An hour later Linn had delivered a tiny person using cesarean section and we had a hard time realizing what had just happened.

William a few minutes after the cecerean section.

William a few minutes after entering this world.

He was beautiful to look at and was moved directly to Nicu (Neonatal intensive care unit) and one of their incubators – he was five weeks early and tinier than most. When something is that small they always take chromosome samples to make sure everything is ok. But boy did he look OK to me! My son!

William, who was named Bruce Lee at first, as the fighter he was – had to work hard to enter this world. His body wasn’t fully developed so a CPAP had to be connected to his nose 24/7 in order for his lungs not to contract. A CPAP is an air-preassure machine that makes sure that airways and lungs are filled with air. Easy in, hard out. Good training I might add. He had this for another two days.

William with his CPAP.

William with his CPAP. I’m positive he was negative.

Anyways. After a day or two one doctor noticed that William didn’t move as much as other kids. He was much more tense and perhaps his cheek was a bit smaller too he thought. A anatomy specialist was sent for as a prequel to the chromosome test that would still take another five days.

The specialist had William examined visually and thoughtfully – I was standing, watching nervously. Of course Williams was alright, wasn’t he? He’s so beautiful, nothing to see here, move on! She did and said she didn’t find anything out of the ordinary that would point to some known disorder.  Still, without that chromotest I wasn’t fully at ease.

At this point we lived at the hospital – just door to door to the room were Williams incubator was. I often visited him and learnt how to feed him using a tube through his nose. I changed his diaper and life was good! After five days he was strong enough to move to our room..

Linn with a couple of days old William..

Linn with a couple of days old William..

But William behaved quite bad in the beginning. He had big problems sucking breasts. I tried my best to show him how but he refused and Linn was quite sad about this. We listened to every advice we got (everyone around us wanted to help) and specialists were sent our way to aid. Tough time I tell you. Linn soon developed severe mastitis and had that for two months. Felt like a year. I truly hate mastitis. Truly!

It’s now day eight in this story of William, and the test results are about to enter the scene.

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Trisomy 9 mosaic.. What’s that?

As I will write quite a bit about my son it might be good for you to know some more about him.

He’s born in February 2013 diagnosed with a rare chromosome disorder called trisomy 9 mosaic – there are about one hundred others similar to him out there in the world. Now I’ll try to keep this basic for simplicity.. So. Chromosomes are the master plan with all the info needed to form us psychically and mentally correct and – We have 22 of them formed as pair with one from your father and another from your mother. (sometimes this could also differ and that’s called disomy) plus a X and Y pair (if you’re a boy that is). They sorted by size, so the biggest pair is called nr 1 and the smallest 22.

Williams chromosome number nine isn’t a pair, they’re three. Trisomy. So something at some point in a very early stage of him being formed went wrong..

the tiny third..

the tiny third..

William also has something called a mosaic disorder – that means that not all cells in his body has the defect. You can measure this in different places of the body and get different counts but most common is that you take a sample of blood and count that. I think they counted around 40-50 cells and saw that around 30% of those had the trisomy defect and therefore 70% of his blood cells has normal chromosomes.

If he had 100% he wouldn’t be with us today.

Some of you might have heard of trisomy before and the most common version is called trisomy 21 (full or mosaic) and the more common name for that is Down Syndrome.

And here’s a shot of William from his first week alive on my arm.

Born 5 week early at 1550g

the 7th of February in 2013 William, or at the time, Bruce Lee, was born five weeks early at 1550g

Now I’m writing this with William sleeping beside me and I think he’s about to wake up. So, lets call this chapter one. Chapter #2 is out!

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Facebook test

Nha! This wasn’t as easy as I thought. I first need to convert my Facebook profile to a page and then I’m allowed to have whatever I write on Facebook to be auto-published here. I can convert my profile to a page but then I’ll erase everything in the past – I could of course download everything but for what purpose? I like my Facebook as a historic document and all of that will just perish and die at least in it’s usable form.

So. No automatic Facebook thing here.

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Still figuring out..

..How to use my blog.. Taking away those 33 plugins that I had – and some that might have slown down my site by a considerably amount – and the add those that I really want back. .. So things might start to look wacky..

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A post to test Facebook connection.

As my site is young again – I need to test a few old addons that worked in the past but that failed during my last two posts. So.. Will this show correctly on Facebook?

Perhaps I should add a picture as well.. So here comes a double shot of William. Past and not as past.

William beside his younger self.

William beside his younger self.

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A little something about the new Adobe Sketch for iPad..

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I confess! I have an addiction to sketch apps.. I’ve used too many and had real fun with most of them. They all have their qualities and often I miss one or two features that I know another app has..

My first favorite was Autodesk SketchBook on my iPhone 3G.. I made lots and lots of people portraits – at that time I thought that the iPhone’s 3,5″ screen was enormous but today I know better. It’s tiny! The iPad on the other hand has a enormous screen. And back in the future the A1 tablet will be reviewed if possible.

Back.. Now I can’t use my favorite sketch app. ProCreate. Why? Because it’s wicked on iPad Air 2 – I know they found whatever was bugging it but they’re being somewhat slow with update. (They’ve known the bug for a week – Am I asking too much?!)

So Adobe released a set of really cool apps a couple of weeks ago and they promise much.. Problem is that the sketch app which I like some – really lack in features that has to do with painting and drawing.. One very important aspect of a sketch app would naturally be to resize the pen size. But somehow they have it in their Adobe Draw which is a vector draw app but forgot to add it here. (Both apps released at the same day).

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Above: Linn is working as a language teacher and she often ask me to make simple drawings that she can cut out and use..

But perhaps the most annoying part is that they use gestures that collide with each other. Two finger swipe to the left means undo.. Not bad, I like. Two finger move, with a paus means move around.. You actually need to paus in order to move!! And two fingers also means zoom in and out. Not as confusing though. The even stranger part is that you have to use the ipad in one direction – if you rotate, gestures don’t. So suddenly you find undo to be two finger swipe up! Great thinking.

The canvas or painting itself can’t be rotated either so you NEED to rotate the ipad in order to sketch. So 2010.

But there are good too.. Those brushes! They are brutal! I like them, very very much! They have a wonderful interaction with each other and I might get a Adobe pen only for the purpose of getting sizable strokes. There is also a great line / figure / help tool that you can use to have part of a shape or just a straight line drawn with ease. Never seen in any other of my sketch apps.

They also have a great companion app called Adobe Brush in which you create your own fancy brushes. And it’s great! And the best of all.. You CAN change the size of your own brushes! Everything you do is saved to the Adobe cloud and I often find myself playing with some simple drawing with the brush app on my iPhone and then I draw using it on my ipad. Instant gratification!

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In above drawing I used my own photographed drawing and used it as a brush. Genius simple.

Anyways.. Now it’s dark, I need coffee and I better go before william wakes up. I’m still at the hospital and I’m trying to use WordPress own app on iPad to make this second post possible.

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Am I back?

I’m often thinking about how to once more get back to rytterfalk.com - it’s not as easy as you might think. It’s been several years now and both you and me we’ve grown quite a bit in body and soul. I for example had the trip of my life with my son that some of you follow closely thru my Facebook page.. and don’t get me started with photography! It’s an area of my life that I truly neglected and that i miss more than.. anything? I’ve used my Sigmas only when forced and my iPhones the rest of the time. Why you might ask, I do too. But mobile photography has more to offer than you might think and also gives a feeling of satisfaction when you easy as that take a shot and develop it directly “on the run” and share instantly with the world.

I still have a dream of an X3F developer for iPad, It shouldn’t be that hard to create a img0001mini.x3f that has enough info to get a speedy development done.. a bit of Swift and Metal and we should be on our way! But that’s for another post..

In February 2013 my life changed dramatically with the early birth of my son who was born with the rare and somewhat difficult chromosome disorder named Trisomy 9 mosaic. In the first year we almost went to hospital as often as we went home and I’m actually right now writing this from hospital with William waiting for surgery. He’s a true gift and I wouldn’t change him for the world..

But my love affair with you guys and my other child – my site, has never left my mind and every once in a while I’ve been wondering what’s missing and the answer is simple. This! There always was this thinking ahead – what to write, what do do, what would you say – reactions and statistics.. New ideas that I felt that I JUST HAD TO SHARE and that activated all those little cells up there! But now, who do I share too? “One” friend? A coworker? Someone at a busstop? Life isn’t meant to be like this. :)

I also noticed thanks to some observant users that someone added some mean code to comments and therefore users of Windows got a virus / trojan warning every time they entered my site. Today, I’m happy to inform that my site is clean as a babys butt! At least should be according to Nortons online / website check tool.

So, since William was born I’ve been using Facebook instead of rytterfalk.com and I think it should be the other way around. So I’m trying to convince myself that it’s ok for a while to post more from life and when ready – about photography too. But for those of you that want the “old” Sigma nut head, I’m still here and I’m still amazed with how great those shots look. (especially on the new iMac 5k)..

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Dick Merrill must be smiling! :)

For those that thought that the Sigma SD1 was a tad expensive and that the DP series had too few pixels, well, now it’s the time to think again! With Sigmas new CEO Kazuto Yamaki making the decisions we now have a quite different playground and to start of the new year Sigma yesterday presented the new Merrill series. The name Merrill as a hint to the one guy that once started Foveon back in 1997 and that invented the basics for the three layered sensor we now see.

The new SD1 Merrill is basically the same camera as the original SD1 only with a new name AND perhaps more importantly, a new price tag. Street price will likely land around $2.200 which makes it extremely affordable compared to just a few days ago. It’s also, thanks to firmware upgrades a much better camera today compared to the day it was released last summer.

The DP1 and DP2 Merrill now share the same, bigger sensor as the SD1 and they also received new optics including FLD glass (which is a as awesome as it gets type of glass).

But Sigma didn’t stop there! For those that already bought an SD1 Sigma will have a program in place that gives those buyers lenses for the extra amount payed. It’s not in place just yet but will likely be around the time the new Merrills are released in March of 2012. (Although I can’t find a specific release date for the two compacts)

This is good news. And according to my mailbox, lots of people like Sigmas new move! Now go save some money and let Sigma know how much we love this! :D

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for the moment..

this site is not updated. I know you noticed and all but i should perhaps write it as well. I’ll be back, but not sure when – lots of you have written to me without getting an answers and I’m terribly sorry for this, i’ve been focused on other things.

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