Merry Christmas

Hi everyone,

As you may have noticed we didn't get around to sending Christmas cards.
But we would still like to wish you......



A Very Merry Christmas from all of us, and a healthy and happy new year!

Louise, Noah, Thijs and Lilo.

Let it snow, let it snow, let it snow!

Does it get more exciting than this?! Only 7 nights sleep and then it's Christmas!

Wait! There's more....! Just when you think it can't get any more exciting, it starts to snow! Oh! jingle bells, jingle bells, jingle all the way, .... :)

Noah saw his first snow only briefly last year, remember we got to take him out in his pushchair off the hospital ward?
This time it's soooooo much better. First we have to dress him appropriately.


We can take him for long walks around the neighbourhood and show him the frozen trees and canals.

But you better watch out, you better not cry, you better be good I'm telling you why - Santa Claus is coming to town!


Snow wasn't the only exciting thing to happen this week.

We also had our baby signing course on Monday. Thanks to Lissa Zeviar from BabyGebaren for giving a wonderful presentation. It was a lovely afternoon, the course left everyone feeling more confident about using signing and there were also good ideas on when you could create fun moments for signing.
After the course there was a tapas buffet and time to enjoy a chat. The coffee went down well especially as it was served with the fabulous chocolates and cookies hand made by Suzanne - thank you, thank you, thank you!

Noah had the night of his life, back to back episodes of "In the night garden" surrounded by his favourite people in the world. Heaven!

Papa and Auntie Anneke

The A-Team

Wishing all of you lots of love and joy ...
and plenty of snow .... and of course a working central heating!

The Drostens xx

We're Home!

Hooray! Noah had a comfortable night and so this morning we packed as quickly as possible and came home. We arrived around one o'clock and Noah fell directly asleep. I think he missed his own bed.

We're very lucky and have nursing care from now and also over the weekend, so Noah will be well cared for and we can enjoy our bed, we missed it too! :)



Thanks for all the mail, SMS's, and support, it really helps and is much appreciated.

And here the next day, a lot better already! Spot the difference with all the previous pictures.




xx

Out of surgery

All went well with his surgery. He was of course in pain when he came around but they quickly gave him some medication to help with that. We will find out the results of his biopsy hopefully before Christmas. He has now had 2 feeds via his stomach feeding tube, so this is all looking good.
This afternoon he watched a 6 episode marathon of "In the night Garden", sucking on his blanket and making sure that either myself or Thijs was nearby.

The ENT (KNO) doctor didn't stop by today so we hope he will do us the courtesy of stopping by to update us tomorrow.

We've just left Noah sleeping soundly in his hospital bed. We're sleeping in the Ronald McDonald house tonight, we'll hear when we can go home tomorrow. Fingers crossed we will all sleep in our own beds tomorrow night!


Here is Naoh pre-surgey.

xx The Drostens.

Getting into the Christmas spirit!

Some more pictures, because we know you love them!

Noah had a visitor this weekend. It s a good thing he has a massive playpen, makes sharing it easier.

On Sunday it was time to get into the Xmas spirit. After buying the biggest tree possible, it was time for appropriate music and decorating.
First we decorated the father .....


then we decorated the tree! :)

It looks better in real life! I promise! Really!

Anyway enjoy the pictures and see you soon,

Thijs

Pictures (Finally)

Hi everyone,

As promised I have uploaded a few pictures from the last month.

Here is Noah sitting at the table on our first overnight visit to Oma and Opa Drosten.



The Lilo animal checking out oma and opa's residence for any unwanted scraps.



Noah making a wish on Stir-it-up-Sunday.


Noah siting in his favourite ball-play-tent on holiday at the GBK.


Noah meeting the famous Sinterklaas.

Noah was fascinated by Zwarte Piet....

... but not as fascinating as his plastic beakers!

No, he wouldn't put the beaker down for this photo .....

... or this one either! He does look cute in his Zwarte Piet hat though doesn't he? :)

Hij komt, hij komt! (He comes, he comes!)

On the 14th of November a boat from Spain, carrying a Very Important Person aboard, arrives at the harbour in the Netherlands. Lots of children have gathered to greet this VIP and welcome him with songs and cheers, even the royal princesses are there. A noble white horse, beautifully groomed and dressed in his finest regalia, stands patiently waiting for his most distinguished rider. "Amerigo" has been kept all year in tip top condition so that he is prepared for this busiest of seasons.
As the boat sails into view, the children sing and cheer even harder to welcome their most beloved SinterKlaas. The boat is festooned with flags and the capering zwarte Piets (SinterKlaas' many assistants from Spain) are throwing sweets and biscuits to the up-stretched hands of the waiting children. Finally the man himself appears. White gloved hand waving he is smiling kindly through his white beard, wise old eyes sparkle in delight at this enthousiastic greeting. As the boat docks and the plank is put into place, Amerigo chomps at his bit - even he can't hide his excitement. Sinterklaas, dressed in his warm red cloak, his mitre and holding his staff in one hand, steps off the boat and finally onto Dutch soil. He is here!
From now until his birthday on December 6th, SinterKlaas will be kept extremely busy. The Piets have to report on all the children, have they been naughty or nice? The children leave their shoes out in the hope that one of the Piets will stop by for a visit. A surefire clue that a Piet has called is that a favourite toy has been played with and something sweet has been left behind as a thank you.
Dutch children are glued to the weather report. Sinterklaas has arrived safely but the package boats, containing all the gifts, take much longer. The Netherlands has experienced high winds, lashing rain and thunder storms these last few weeks. There are rumours that one of the package boats has been lost at sea. The Piets are frantically searching but who knows if all the gifts will arrive on time?! The wise, kindly Sint' seems unruffled by all this frenetic activity from his helpers. After all he's been doing this for hundred of years; he has a strong faith, and exudes a calm in the middle of this storm. Where the Piets are childlike and playful, SinterKlaas is an imposing figure. He is very holy, a good and kind man but stern if you've been naughty. You wouldn't want Sinterklaas to think badly of you so everyone is on their best behaviour.
Sinterklaas works very hard when he's in the Netherlands. He makes time in his busy schedule to visit lots and lots of children. He's especially kind to the children that can't be at home for the eve of his birthday. You can understand that this is a big worry for such a child. Even though the Piets are mischevious, they do take their jobs very seriously and they let Sinterklaas know where every child will be for the 5th of December. Last year he visited Noah and all the other children in the Sophia hospital in Rotterdam. This year he is making time to visit the GretaBonteKoe in Aalten. Understandably he's going to be very busy on the 5th and so he's coming today!!!!

The place is a hive of activity. The children have spent the week making presents for the Sint, it is soon his birthday so of course he needs a present too! The farm has been decorated with packages, boats, and drawings of the Sint, Amerigo and the Piets to make them feel welcome. A special comfortable chair is set in place, so that Sinterklaas can rest and perhaps even talk to the children for a little while before he has to carry on with his busy schedule. Pepernoten and speculaas biscuits are baking in the oven, filling the air with their wonderful spicy aroma. The children are shiny faced, washed and dressed in their finest, ready to welcome their wonderful Sinterklaas.

There is still a few hours to go till his arrival, so time for me to brush my teeth and comb my hair, hope that we've been good enough to receive a kind word from the man himself. Until then I'd better practice my singing, I'm still a bit shaky on my Sinterklaas songs. I'm sure he'll understand if I only know the one song, I'll make sure I'm better prepared next year! For now I can't help but get excited - today is the day! Hij komt, hij komt!

Stir it up Sunday!

Sunday 21st November in the UK is known as stir it up Sunday. It's the traditional day for preparing the Christmas pudding - yummy! When you're busy collecting all the ingredients together, it's traditional to say a prayer to ask God to stir up our lives so that we may become more fruitful in doing His work. All the family take turns stirring the pudding and everyone gets to make a wish.
A lovely tradition - which I'd never heard of until I read my BBC Good Food magazine last month! My family weren't that big on tradition, in fact my family weren't that big on family!
It's enough to say that over the years I appreciated having the opportunities to create my own way of celebrating special occasions. During my years in the RAF and then moving on my own to the Netherlands this open spirit helped me feel at home wherever I was. I love celebrating birthdays and Christmas. Imagine how much I love the Netherlands where everyone turns up for your birthday and I get 2 days to celebrate in December!! SinterKlaas and Christmas - hooray! I'm in holiday heaven :) I'm so excited. I swear that sometimes I can't sleep at night just imagining all the gifts I want to buy and food I want to cook to celebrate.

Last year was, out of necessity, a quiet celebration. Noah was still in hospital, our house was up for sale and we were in the Ronald McDonald house, there was no proper Christmas tree in our room. I did my best to adapt to the situation and I must admit ICK 1 had the most tactastic Christmas tree they have ever had, complete with green frog dressed up in a santa costume as a the fairy on top of the tree, well it was a tree frog! It brought a smile to the kids faces in that scary room so in my book it was a success.

So this year I want December to be the best SinterKlaas and Christmas ever. The cake is baked, actually it's been baked since June, so it's spent the last few months marinating quite well in whiskey, sherry, brandy or whatever booze I have at hand to add each month!
The mincemeat was cooked 2 weeks ago and is patiently waiting for it's pastry crust to complete itself as a traditional mince pie. This Sunday I decided to join all the traditionalists I've read about and began our Christmas pudding. Everyone got to have a stir and on Monday, after 8 hours of steaming, my pudding stands proudly in the spare bedroom waiting for it's moment of glory on the 25th of December. The Christmas cards are lined up neatly in their boxes next to a new pen - no running out of ink for me! I'm looking forward to sending them, but not the writers cramp from signing and addressing them - oh well, they do look so very splendid hanging up, so it's worth every twinge I suppose.

This is my perfect moment. This is the time when I can still imagine that I'm prepared. I'm so enjoying this moment. Lets just stay in this moment ..... please!

You see from now on the days start getting shorter and shorter. Up until now I've been imagining the gifts ... but I still have to buy them. I have to wrap the gifts ready for posting and then make the time to take them to the post office. Pretty soon, before I've taken a breath, it will be the last posting dates for Australia then America. Oh no! now it's the last date for UK and finally too late even for the Netherlands. Aaaaargh!
OK, I'm going back to my perfect moment. All will be well. Breathing in .... and breathing out.

This year feels special.
Noah is going into hospital on the 8th of December. (I'll come back to this). Our house was up for sale and is now sold. We should be experiencing deja vu but it feels a bit different this year. Last year everything was so unknown, so frightening, it felt more like balancing on a knife edge. This year Noah has been home for 10 months. We've gone through the hard stuff and we're still standing. Noah is doing so well, he's amazing us and all of the people that take care of him. The really great thing is, now he has the right food for him, he's like the loving little boy we knew and had missed for so long. He's got so much energy now, he smiles all the time and is much more physically active. He's even started eating on a regular basis.
This year feels special because we've done it. We brought a sick little boy home from the hospital. We didn't know what to expect but it's turned out even better than OK, it's turned out great!
Our home is sold and a new couple is ready to take over, but this time we're ready to go to a home more suitable for Noah's needs. We've loved living here, but it's the right time to move on.

When I read about 'Stir it up Sunday' it touched a chord inside me. Our lives have certainly been stirred up, but we're standing stronger than ever and we've learned so much and experienced so much kindness and generosity from people.
It's been a really special year; although this won't stop me praying for a less interesting 2010!!

As I mentioned earlier, Noah is going to hospital on the 8th of December. The ENT (KNO) doctor will take a look at Noah's blockage and lungs to assess the changes and condition from last year's inspection. As this will be done under anesthetic, it seems an opportune time for his PEG sonde (a stomach feeding tube) to be placed, one of his testicles to be lowered and a biopsy taken from his colon. Quite a lot for one little man but better than having to go repeatedly under anesthetic, which always holds a risk. This is all a positive step forward. Since Noah is regularly trying foods, it will be great to get the feeding tube out of his nose and throat, as it makes it terribly uncomfortable to swallow when it's there.

So our lives continued to be stirred up. The hospital trip is another step forward in Noah's progress. Our previous posts haven't really gone into what we're busy doing with Noah, so that's why I'm writing so much now. Noah is finally getting the right food, it's amazing to see the difference this has made in his and our lives. He no longer suffers with the agony of wind cramps. No more explosive diarrhea. He finally has the right intake of calories and fibre so he now has energy. His progress is coming on in leaps and bounds now that he's no longer suffering.

It may seem a bit weird to be so actively involved, but Noah's development was hugely interrupted by his long stay in hospital and by his physical condition. So the normal progression and development didn't happen, things that would happen automatically now have to be encouraged. The toughest part I find is knowing when to stand back and let Noah work it out and when I should be encouraging. No one seems to have a good answer so I just fly by the seat of my pants and that approach seems to work!!! ;)

We're blessed with a great support team, we call them the "ists", ( physiotherap-ist, ergotherap-ist, logopod-ist ... you get the idea) , but that's only an hour every couple of weeks. Due to the fact that we have so many different people working here, we need to have a schedule. It would be very easy to turn his exercises into a strict regime but we REALLY don't want that! We want it to be fun and spontaneous. Something we can work into the moment, but in order to do that we need to understand the ideas and methods behind what we're doing.

One area we're learning about is communication. Elisabeth, our logopodist, recommended a great book, "It takes two to talk" (ISBN 0921145195) or the translated Dutch version, "Praten doe je met z'n tweeen" (ISBN 9789066659704) (FYI: if you look at the Hanen store website the book has been translated into many languages).
This book has given us great ideas. For example, Noah needs to learn sign language. In order for him to learn the signs he first needs to look at us. Not only must he be able to look at us but he needs to concentrate on us.
So these are 2 steps that Noah must learn before we can begin with the actual sign language. Over the last few months Thijs, myself and his carers, through play, have been building on Noah's ability to focus. This is going really well. Communication is a two way street, so one of the play exercises we've used is pushing a ball back and forth between Noah and ourselves. At first he didn't even want to look at the ball, now he loves it and pushes and kicks the ball towards you and waits for you to give it back. It's so great to experience laughing and playing with Noah. Now he really focuses on you when he plays, it's a really amazing feeling. He's gone from a baby to a little boy in what seems a blink of an eye. I know every parent say's this but it's true, the baby time goes so quickly!

In December a lady called Lissa Zaviar is coming to our home to give a lesson in Babygebaren or baby sign language. It's an adaptation of Dutch sign language simplified so that baby's hands can form the words. Baby signing is for all children. Lissa has written a great book (in Dutch) that we've been using with Noah. If you want to read more about baby signing check out her website which is written in both Dutch and English. Noah's nurses, carers and some family will be here, so not only will it be an interesting course but it's a great time for everyone to meet each other at the same time instead of briefly for a shift handover. We're both really looking forward to it.

Another area we've been busy with is Noah's mobility. Due to the fact that he has more energy, Noah is much more active. Working with Inge, Noah's physiotherapist, we've been teaching Noah to lean on his hand when he wants to reach to the side. Which he has now mastered. Turning around on his bum by opening and closing his legs. He's not quite mastered this technique but he's getting there. Rolling on to his tummy and lifting his chest up off the floor, another exercise he's getting better at. Noah can't get into the standing position but if we lift him onto his feet, he can stay standing for a few moments. Previously Noah hated pressure on his feet, now he always wants to be standing tall. Over the weekend we bought him his first pair of shoes. These are specially designed for that middle stage where he needs more support than a slipper but not the rigidity of a full shoe. By the way .... why are kids shoes so expensive, they are so very much smaller than mine but not so very much less costly?! The downside with Noah being so much more mobile is that we're not used to it and so were not prepared for Noah falling out of his box. That scared us silly. Now we always make sure the gate is fastened and wherever we put him make sure he's safe from rolling out or off. On the up side it does feel like we've passed another "normal" parent right of passage though, is it weird to be happy about that?

I've mentioned earlier that Noah is accepting food more readily. We've all persevered trying to coax Noah to try and put anything in his mouth. Babies naturally put things in their mouth, but Noah would only put his own fingers or his blanket in his mouth. If you put food on his fingers he'd wipe off the food and then put his fingers in his mouth. Slightly frustrating! One of the great things about going to the GretaBonteKoe on holiday is that the care aspect of looking after Noah is taken away and so we can focus on being Noah's parents. On our last visit to GBK one of the nurses put Noah in a normal kiddies high chair. I know it doesn't sound special, but everything we have is medical, specially supporting and very bulky. So to see Noah sitting in an everyday chair that an everyday kid can use was really great. This then made it much easier to sit Noah by the table with us to eat. We'd noticed that Noah was putting a few things near his mouth and sometimes in his mouth. By the end of the week Noah had progressed from a little taste to eating a tablespoon of yoghurt. He didn't accept it off the spoon but only off the finger, but at least he ate it.
When we got home we were keen to continue but Noah cought a cold and wasn't very well for 2 weeks. We need eating to be a positive experience so this wasn't the best time to push forward. We were a bit worried that he would forget how to eat but luckily this didn't happen. Elisabeth was on her regular visit and since Noah was feeling better we decided that would be a great time to try again. He ate another tablespoon of yoghurt, again not using a spoon but using pappa's finger.
If you can imagine, feeding Noah is like trying to feed a baby piranha - a mouthful of sharp teeth. Not the greatest idea to use your finger! Thank goodness he's now progressed to the baby spoon. Noah has also tried rice pudding and potted baby food with varying degrees of success. We're so proud of him, I hope having the nasal feeding tube out will make it easier for him and make eating a much better experience.

It's been a busy time but I have to say totally rewarding. Finally we're starting to relax. We're enjoying the luxury of 4 nights sleep a week. We have another break at the GBK coming up, and soon it will be Christmas. How great is life right now?!! I'm living in the moment and enjoying all the anticipation and hope that surrounds us. Breathing in ..... and breathing out.
The frantic Christmas shop nightmare is a worry for another day! :)

This is the end of a really long post, but we hope this gives you a glimpse into our daily activities. Since I've done all the typing I'll let Thijs put up the pictures. Since he's in bed catching some needed sleep the photos will be posted a bit later.

Take care all and enjoy this wonderful festive season.

xx

Sold!

Our house is sold!

That means that we will move out before April first (no fooling!), so we are busy looking for a new house.
So, quick and a good price, we couldn't say no.

Thijs & Louise
   

Long Silence -

Hi everyone,

A long silence here, our apologies about that. Of course we have our reasons and we have been very busy, but also we have been low on energy. So the blog was for the moment something that didn't happen.

Oh well, we have been taking pictures a few times, thinking we would post them soon. So I will add a nice bunch of pictures to this post later today, when I have downloaded them from the camera.

So what's happened these last weeks?

First of all we had a nice relaxing week in the east of the Netherlands, at the Greta Bonte Koe. I worked, but the travel times are about the same, so that was no different from usual. Louise was able to go walking with Noah, and with 24 hour a day nursing care available we managed to sleep a lot, and relax quite well.

These walks are very relaxing for Noah as well.

And even daddy got a chance to join on a walk. The scenery and wildlife is very nice around there:

Plenty of ducks in the distance (which were served at the local restaurant as well, very nice!).

 And some wild chickens wandering around in the fields. 

 In the mean time other things were happening as well.......
After talking about it for a while we have decided to move to a new house. Where and when we don't know yet, but we have put our house up for sale. So while we were away the real estate agent (makelaar) had plenty of time to take pictures and prepare a brochure. We expect it will take a while to sell the house, as the housing market is very slow. This will give us plenty of time to look for a new place. For now we are concentrating our search on a house in The Hague. 
The most important thing for us is that the new house will fit Noah, and we can go out easier. I think he'll enjoy that:

He is definitely ready to go out, that's for sure!

Saying that the housing market is slow doesn't mean much as we have the first viewings by prospective buyers today and Wednesday. So we spend a lot of time cleaning up the house, and my parents helped us move a lot of stuff to a storage box last Saturday. Just a small sample of the 35 - 40 boxes of stuff we moved saturday:

Also we have been talking to the real estate agent a lot about how to sell the house, and possible new houses. He will show us some houses on Friday, to see if we like them.
For any of you that would like a house near the sea: For sale

Just to complicate matters further Noah's medical furniture arrived, just before the estate agent came by to take pictures. He now has a bed and a play-pen (box) that can be adjusted in height. This will save our backs, as he will only get bigger and heavier. The stuff is big, bulky and in the way though.......

Trust me it looks even bigger in real life.


Back to our time line:
Arriving home from our holiday we had an appointment at the local hospital immediately. The appointment was with a specialist regarding Noah's tummy problems. The doctor took a lot of time to explain things to us, and advised us on further steps. She also took action when she heard that Noah was still on his baby milk (usually given till about 12 months). She then double checked the charts, and we realised that Noah has been slowly losing weight for the last two months. He has been growing in length, so it doesn't seem to bother him much, but it is not a good sign. He was a bit on the chubby side, which is gone completely, as he now is of average weight for his age, while being taller then average.
So she phoned a dietitian, Louise arranged an appointment, and Noah's new food arrived Friday. Everything was ready in four days. Not bad, as it has taken the Rotterdam hospital about four months to get absolutely nowhere. Perfection cannot be expected in such a short time period, so we are still waiting for some connecting bits. Oh well, they are supposed to arrive by courier today, so that should be okay. ... They did and so Noah is at last on his special food. He doesn't seem to like his beetroot risotto. Maybe a bit too wierd to start on anyway.

The second result of the meeting was that the planned operation in Rotterdam will go ahead. We were unsure about it, but after the doctor explained all the details we now understand the reasons behind it. Unfortunately the local hospital is not technically equipped to do this operation, because it seems so much nicer there, and so the operation will go ahead in the Sophia.

One last thing we picked up during the holidays, was a nice cold. Noah's gets to play with other children, but he picked up something from one of them. He passed in on to us, so the whole family was coughing and sneezing. We seem to be over it by now, but it made last week hard work. Noah needed a lot more suctioning, and we had to wake up often in the night to clear his airway.
Luckily our GP (huisarts) did drop by at the house last Friday for our Mexican flu jabs, so we should be protected from that one.

Well, I'll update this post with some pictures this afternoon or tonight. As is traditional, a Noah enjoy his bath picture as well!

If you watch closely you can see how soaked I am, and the droplets on the door reflecting the flash. The rest of the water is already on the floor. A couple of short videos at the end of the post, for everyone with a speedy connection as well.

See you soon,

Thijs

Visitors, Birthday, Hospital and other stories.

Hi everyone,

We had another busy couple of weeks, so a quick message, with some pictures. We actually didn't take many nice ones, so you'll just have to wait for the next update to see some proper pictures :-).
Lorraine, a friend of Louise and Noah's fairy godmother visited us, and I took some time off, so we had some time to enjoy a holiday like feeling. Louise celebrated her birthday two weeks ago (yes we haven't been updating very much), which we celebrated with a very nice diner, and some cakes.

We also had to go to the hospital, for a 24 hour observation. All went well, although no news or anything about his belly.  The outcome of the observation was that we can reduce the amount of support the breathing machine gives him. Although he will stay on it for the same amount of hours, it is a big step ahead. The support is reduced by about 25 %, and so far he seems to be doing good on his new settings.  Noah wasn't too grumpy in the hospital, but we think he prefers being home a lot more!

As I mentioned the doctors didn't investigate his digestion problems very seriously. We are very angry about this, and have send a letter to the hospital concerning this. Just to show you what we mean, a few pictures (not very nice ones unfortunately). 
As you can see his belly resembles a balloon sometimes, and taking the air out is not a nice thing to do, as it is very invasive.

Noah's belly can shrink up to 10cm when he has no air in it.

 Unfortunately Noah also caught a virus in the hospital (or shortly afterwards) so he had a pretty high fever last weekend. He had a 39.0 celsius (102 fahrenheit) temperature on sunday, but some stronger paracetamol and a good night sleep dropped the temperature, and he was a lot better by wednesday.

So we took it easy for the last few days,but manage to get out for a few nice walks. Since this is the Netherlands, the weather is sometimes a bit wet. That does not stop us though! Out in the rain!

We hope to post a nice update soon, as we are taking steps to resolve Noah's digestive problems.

Thijs

Call to all CHAOS parents

Hi everyone,

As we are slowly adjusting to life with a child with CHAOS, we are wondering how other parents go through this. We are also curious about your experiences, tips and most importantly how your child is doing. We know of one other child with CHAOS, Kalmin, in the U.S.A. and really enjoy talking to his family through skype.

Thus we would like to get in touch with you! So, please send us a mail, and hopefully we can get in contact and help each other out. We have opened a special mail address for this:

CHAOS supportgroup at gmail.com (all one word before the @ sign)

With your permission I would also like to gather some information about the doctors that have treated your child (names, specialisation and email address of the treating doctor), so any doctor with a new CHAOS child can get information from his or her colleague. This is also important for us, as Noah will need throat reconstruction surgery in the future, and this is still a very experimental procedure. So any extra information is welcome. We will of course supply you with this information as well.

Thank you very much and we hope to hear from you,

Noah, Thijs and Louise

What's the story morning glory?

Well, it feels like not much has really happened since we last updated you all but then looking at our photos we thought we could squeeze in an update.

We're still waiting to see what's going to happen with Noah's tummy. Pretty much it's been lots of pooh and lots and lots of washing!! I hope we will get some advise on the options available to Noah in order to fix his unstable tummy. I'm half afraid that no one will think about it until we're under their noses. Unfortunately we will just have to wait and see and hope that the difference of opinions has been resolved and there is a clear direction for Noah.

Until then we're working on Noahs' development with regards to his core muscles and his mouth. Happily we can report that Noah is doing great in both areas.
He's getting a lot more physically active. He doesn't crawl or do the big things but he's mastering all the in-between steps. So it's all going in the right direction. Thijs does a lot of work with him, using his own belly as a nice soft training gym! You can see in the background that Noah has a baby size yoga/pilates ball. I think that's so cute as I'm using the adult version to retrain my tummy muscles! :)






With regards to his mouth development, he now has two canine or incisor tooth, (hoektand), with the other two pushing through. (He's also grown to 86cm, he is the amazing stretchy baby!!)
The speed at which his teeth keep growing through is having an impact on Noah eating as well as all the problems with his tummy. He is showing a lot of positive signs of being ready for food. He is now occasionally bringing toys to his mouth, he sticks his tongue out and he can make lots of different noises now. He can "click" his tongue, make kissing noises and his favourite is the gnashing of teeth - it's now a familiar sound at 2am!
Here you can see his tongue sticking out, he's looking very cute in his pyjamas watching his favourite character, Makka Pakka, on the telly.


Thijs was sitting opposite Noah enjoying his "witlof met ham en kaas", or chickory wrapped in ham with a cheese sauce. Noah was fascinated and so Thijs just gave him some mashed potato with some cheese sauce. As usual the camera was handy so we took this little film. What pleased us most was that he leaned in for the food, also stuck his tongue out to taste the food and as you can see, he is getting interested in cutlery - but he doesn't put it even near his mouth yet. Oh well, every little step is a step forward.




We decided to take Noah out for dinner to a family friendly Greek restaurant in the neighbourhood. We weren't able to do this earlier as he was on his oxygen. A great improvement with the new bigger canule is that he is off his oxygen again (oxygen and the candle light that is standard in all dutch restaurants don't really go together). He was immediately interested in the free ouzo that they offer you before dinner. "Hands off kid, this one's your fathers"!! :)


A bit of tzasiki went down well but the out and out favourite was Mummy's chocolate mousse. He took it off the spoon and managed to get a bit in his mouth, but most of it ended up everywhere else......


We covered the table as a precaution, but maybe we should have just covered Noah up.
So ... ouzo and chocolate cake ... yup, he's our kid alright. No doubt about it!

We had a big scare on Sunday, not with Noah this time but rather it was the electricity supply. Our electricity shut off and we had no power whatsoever. Not knowing if this was a street problem or just our house frightened me to death as Noah was sleeping on his breathing machine and it hit me how vulnerable we were.
Luckily it turned out to only be our house and the engineer came out and fixed the problem before the breathing machine internal power unit run out, which was twice lucky as it turned out that our reserve batteries were also very low on power!!
HUGE reminder that we have to be responsible and think of all sorts of disaster and recovery scenarios. I should know this, as in another life this was part of my work. The power outage was caused by the fact that we are supposedly pulling so much power that our master circuit breaker overloaded and cut out. It's not an easy problem to permanently resolve, but for now a new fuse will fix it. I really don't want to see our energy bill in January. Gulp!!
Needless to say all of the reserve batteries are fully charged now!


The useless battery-pack on the bed next to the charger.
Noah's breathing machine hooked up to the almost empty battery pack. It cut out after 10 mins but luckily there is an internal backup of 3 hours in the breathing machine itself.


I was so stressed out I almost didn't go but I'm so glad we did. A friend gave us two tickets to see Bjorn Again, an ABBA tribute band. They were playing in a local venue and we'd been looking forward to going to the concert because we knew it would be fun. It was fantastic. These aren't great photos but they do sum up the atmosphere.

Here is "Bjorn" doing an amazing guitar solo in front of a glitter ball - does it get any more disco than this??!!
"Agnetha" & "Bjorn"
The whole group were amazing and got the crowd really into the show. A great tribute band and a great gift. A very nice end to the week.

Mental Relaxation

Hi everyone,

After a very stressfull period, people always tell you to relax. This is of course easier said (by them) than done (by us).
Something we're having difficulty adjusting too is other people organizing our life for us, which seems necessary to them but is very intrusive to us - so their well meaning advice does not always help.
That does not mean we don't listen at all to this advice, so Louise has upped her work out schedule to three times a week, and I am trying to reserve some time for my hobby, cooking.
After all that exercising Louise is hungry, and so I am ready with some, hopefully, very nice food which we then sit together and enjoy.

Louise refuses to be photographed during her excercising!!! However, we have got some pictures of some of our dinners for you. First this tomato creation, with a picture of what it is supposed to look like behind it.


And a nice fig and almond cake, thanks to zen can cook.


Served with a glas Pedro Ximinez Sherry. It was open, so we had to drink it.... At least that is my excuse and I am sticking to it.


And our wedding anniversary diner, which we starting eating before remembering to take a picture. It just smelled too good. We went with an Italian theme and Louise seemed to like it a lot!
We both plan to do some more things, (joining a choir for Louise, Aikido for me) but finding time is difficult. Visiting or seeing friends is always de-stressing as well, but we don't always have the energy.
It is possible us to hire a bit more care for Noah, but having a stranger in the house does not make it easier to relax. It's a really tough choice, sleep or privacy! You'd think we'd be used to it by now, but I don't think we ever completely will. Also, even the nurses need a bit of supervision (maybe they don't need it, but we like to check anyway. "Control-freaks-are-us"!). Plus the nurses need to be updated on the latest developments which costs us energy trying to remember everything.



On to the stuff that keeps us stressed.... and some stuff we're doing about it.

On our insistence all Noah's regular carers had a big overview meeting, to get everyone on the same plan and informed. This was a good step, as it cleared up a few things, and helped the caretakers (physio, nurses, etc.) communicate directly to one another. This means that we don't have to remember everything and pass it on between them.
A few more things came up in the meeting, one of them being a small worry from the nurses that Noah is growing very well. This may sound a bit weird, but they worry about not being able to carry him upstairs. Thus the subject of moving is back on our plate.... So much about de-stressing! We are looking into improving the stairs as they are quite slippery, but we don't know if that is enough.

After the visit to the KNO doctor (ear-nose-throat), and the decision that he needed a bigger canule we needed to wait about two weeks before it actually happened. That meant putting up with Noah looking like this quite often:

Not our favourite look, plus he was back on oxygen support and longer periods on his breathing machine. Since Friday he seems much improved now with his bigger size canule. He no longer needs oxygen (we're back to how good it was a month and a half ago), and he seems to sleep less. We hope to start weaning him off his machine as well, but lets first see how he does for a week.
About the sleeping: he now sleep on his tummy sometimes, although we don't know how he gets there, as he doesn't turn over when we are watching.
Anyway the results are quite fun to see, with the added bonus that he sleeps quite peacefully on his tummy and doesn't wake up during the night so much.



Another ongoing concern is his tummy, and how much air he traps within his bowels. His bowels are getting stretched out of shape with all of the air being trapped inside. I asked my uncle Jan for independent advice, since he is a pediatrician. He had some good ideas, and he talked to the Sophia Rotterdam hospital for more information. He then explained it all to us, so we have a bit better understanding of what is going on. In short the doctors think that Noah stomach has rotated along a vertical axis, and is not in a completely stable position.
This is not a well known disorder so they are unsure what exactly caused it, and how it influences his digestion. They think it can be anchored, in a position that causes hopefully no further problems. The problem is operating in this very sensitive area. Noah is just developing his muscles, and his breathing is obviously still not equal to a normal child.
We are still weaning Noah off his corset, but it is still very helpful when he is tired or full of wind, so he's not completely free yet. The corset helps him to have core muscle stability and something to push against to get rid of the wind. He must be completely independent of his corset before any operation, as it will be impossible to wear with stitches from the operation.

Last but not least, Noah is still not eating. One of the main reasons we suspect is that his canine teeth are now showing up. The first molars are all four through, but not completely. He seems to be a bit more interested in bringing stuff towards his mouth but he isn't chewing on his toys yet.
We are also still waiting for advice on his new food, so he is still on his milk. Since all the blood tests on vitamins and minerals came back okay, we are not too worried, but it would be nice to get this sorted.

We will have to go to the Sophia soon for a 24 hour observation period, in which we will get a private room, so all the doctors can visit and examine Noah. I will take care of Noah for that day, and sleep with him. We hope that a lot of our questions will be answered, but it will probably take some time for the doctors to process the results of all the investigations.

So a lot of work, and as usual a lot of question still open.

One last thing we both like to do is read, and we stumbled across these little quotes for you:

“The best thing about the future is that it comes only one day at a time.” Abraham Lincoln

“We have normality. I repeat, we have normality. Anything you still can't cope with is therefore your own problem.” Douglas Adams

“He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it.” Douglas Adams

We hope to update you soon with some pictures of Noah, so see you soon!

Thijs