So what's keeping us so busy?

You may have noticed that the regularity of blog updates has dropped off considerably since Noah has come home. So I thought I would explain exactly what's keeping us so busy.

Taking an intensive care baby home involved a lot more than we were prepared for. For me it's meant that I have to wear many hats, or loosely translated, learn to cope with different situations by using different skills.
There's my mother hat, where I'm just loving and enjoying being with Noah without the worry of care giving.
There's the nurse hat, or the care giving by taking care of his trachea canule, administering medicines, inserting feeding tube, monitoring his condition etc. etc.
There's the personal manager hat where, together with Thijs we are planners, employers, budget controllers, coordinators and inventory controllers.

I admit that I dislike the administrative side of caring for Noah but at least it's straight forward. It's been a challenge and I've had to learn some new skills, plus I'm learning that forward planning is not just nice, it's essential!

The actual caring for Noah is incredibly busy but it feels good to be able to do it for him. Both of us from the start wanted to learn how to take care of him, so that Noah could receive consistent care and we could feel that much closer to him. We're both quite proud that we can do so much for him. I just wish I was a bit more confident in my abilities.
What I mean is that I do believe in myself as a mum but it's tough to be the carer because it's literally on the job training with a very steep learning curve! There are no reference books, there's just your own judgment and of course Thijs is always supportive and we're able to bounce ideas off each other. We're always aware that the consequence of getting things wrong is that it causes Noah pain or illness so that's what makes it quite daunting.
Another aspect of taking over Noah's care is that as soon as Noah masters one developmental milestone, there is always an "expert" on hand to tell you he's behind in another area. Which in fairness is their job, they have to see the problems in order to provide a solution. Lack of sleep and high stress levels don't make you a very rational person though! I can never really know if I'm doing a good job because there is nothing to compare it too.

I know that Noah is a lot happier at home, but I was not really that certain that it was good for his health to be home or if it wasn't better that we just arranged 100% nursing and that I went back to work. Let me explain why I thought this.

Because CHAOS is a syndrome, we find that it's all about keeping a balance - ensuring Noah's energy is distributed evenly between all the different developmental areas whilst not tiring himself too much.
For example, at the moment we're training Noah's lungs to be able to breath off his machine, whilst at the same time training his stomach muscles to be able to breath deeper, while also trying to get Noah to eat real food so that he gets enough energy to build muscle and strengthen his lungs so that he wont need a stomach feeding tube, which means training Noah to not be dependent on his corset in case he does need a stomach feeding tube! Gaaargh!!! Everything is inter-dependent so my usual method of assigning priorities doesn't seem to work - these are all priority one.
As you know, Noah can only have the operation to remove the blockage in his throat when he can breath 24 hours on his own, without his machine, without oxygen support.

So food for Noah equals the energy he needs for all the growing and healing he needs to do, but since Noah came home we've been really struggling with trying to get food into him. He has his feeding tube but trying to get his milk to stay in him is an uphill battle. After 8 weeks of diarrhoea and projectile vomiting and no medical answers we suspected a sensitivity to his milk. It took a long while to find a suitable food but we hope that we've found it. Noah stabilised for a month or so, although we still had to deal with excessive gas which produces vomiting but we thought that was due to him swallowing so much air as he is sucking his fingers so much due to teething. However the situation changed these last 3 weeks and now we have constipation. It's been a real challenge to get medical people to understand why we were so concerned. At first I thought it was that my spoken Dutch wasn't clear enough. Now I realise that it's just conflicting styles of receiving and delivering information. With the help of one of the nurses that takes care of Noah and a sympathetic doctor, we've got appointments set up with a Logopodist (specialising in feeding) and a dietitian.
Yesterday we went to a different hospital to treat Noah's constipation. They took a routine X-ray to confirm constipation. They mentioned that Noah has a hernia in his gut but since they were not familiar with Noah, they wanted to investigate further. We're told not to worry, (hahaha!) With this many people working on this problem I hope that some light can be thrown onto why Noah has so much trouble with his food and best of all would be if there is an easy solution for it.


Next to the number one priority of getting Noah off his machines and breathing for himself, what's almost just as important to us is that Noah is enjoying as normal a life as possible. This means playtime, getting outside for fresh air, interacting with others and leaving his world open to all possibilities. Are there enough hours in one day for all this?
You can see that trying to get all this right, and knowing the cost of getting it wrong, that it would be easier to hand it all over to professionals.

Unfortunately it's not just caring for Noah. Sometimes it feels like we're taking on the whole world just to get the right treatment, equipment and correct level of care for our son. As if the stress of your son's illness were not enough, there is the burden of fighting bureaucracy on top of it. To be honest this can be crippling at times. I feel like we're trying to do a good thing. Our son is home, which is best for him and also good for the hospital because now there is an ICU bed free for a child that may need it.
As a family we decided to have a child, there are no guarantees and we accepted that. We've gladly sacrificed for Noah. Wherever possible we've taken responsibility for our family. But there are some areas where we need help. We desperately need help. Thijs has had to fight and fight and is still fighting to get the level of care that Noah is entitled to. We're lucky, really lucky that we've got good people trying to help us, but we're close to despair because it doesn't matter what we do, nothing seems to move these administrators. Giving up isn't an option but this costs us energy that we just don't have to spare.
It's a terrible feeling to be so helpless and to have to rely on a government body for compassion for your situation. I do not understand why no one has come to our home to assess our situation in person. If Noah's health were not so complicated then he wouldn't need so much care, which would mean that it wouldn't involve such a large sum of money (which by the way is set lower that what is actually costs to pay for the amount of care he needs!). So the more care a person needs, the less likely they are to get it, unless they are institutionalised and then it will be paid out.

Putting Noah back in hospital or in an institution is something we will never seriously consider. The hospital was too traumatic an experience for us to ever volunteer Noah to go there just because we're too tired.

I'm learning that it takes a lot of belief in yourself, trust in your partner and digging deep for reserves I swear we never knew we had to take care of our son, Noah. I've learned so much, not only about myself but also about Thijs, and we're much closer because of it.


So what turned the tide and convinced me that we're doing a good job? It sounds so simple when I write it down, but it was our holiday at the GretaBonteKoe. Thijs and I got some sleep, and some rest. We had time. Time to evaluate what we'd been through, where Noah had come from and how far he's come. We had time to discuss our thoughts and ideas and we realised that although it's been hard, we've actually done OK, in fact we've been pretty spot on with our ideas about Noah.
All this time we've been running from one emergency to another, struggling with our exhaustion and just keeping on going, we hadn't had the time to really evaluate our situation.
I cannot really express how it felt to walk downstairs and see Noah sitting outside in the sun laughing and looking at the cows in the fields and the other kids playing. Such a long way from lying in a hospital bed with tubes and drains in him. My heart felt so full of joy and amazement at our wonderful Noah, and that's the moment when I started to feel a little bit proud of Thijs and myself. I know you're not supposed to admit to feeling pride, but I can't describe it as anything else.

A lot of different "experts" predicted dire physical handicaps for Noah, we dared to hope for a different outcome and thankfully Noah has busted a lot of those predictions. By us not imposing limits, and having hope we helped Noah and eventually he will prove all of them wrong.
One of the most important things I've come to realise is that Thijs and I are the experts when it comes to Noah, everyone else is just making an educated guess!

Taking care of an intensive care baby is a huge investment, but the return is enormous. The joy of sharing that sense of achievement with Noah and Thijs is something I can't describe. All I can say is that this journey that our family is on is scary, tiring, exciting and amazing. What a trip! I wouldn't miss a second of it. But if anyone wants to lend a hand, don't let me stop you - especially if it involves taking on the zorgkantor! :)

Spare a thought for Kalmin

Kalmin is a little boy who lives in America who was also born with CHAOS. His mum and dad, Marci and Paul have been in touch with us throughout our journey with Noah.

Today Kalmin is having his reconstructive airway surgery. Please spare a moment to pray for this family and send them your positive thoughts.

Our hearts are with you Kalmin.

Noah, Louise & Thijs

Update: Kalmin's surgery went great - he's now in recovery and hopes to be home by Wednesday.

The running joke of burocracy...

Hi everyone,

Another episode in the running joke of administration - Dutch style. As you may remember we had some trouble (to say the least) of convincing people before hand but we thought it was all sorted now... How wrong can you be.

I'll first explain a bit about how it works in the Netherlands, or more accurately how it is not working for us at least. If you are chronically ill or handicapped you are entitled to get help. The amount of help is dependent upon how much help you need doing your day to day things, compared to a normal person (or baby/toddler in our case). You have to apply for the help, and your case gets reviewed by a specialized institution, the CIZ. Now we had some trouble with them, getting the right amount of care, as they underestimated Noah's condition.

The CIZ writes a document stating how much help you are entitled to, and specifies the number of hours of care, or home cleaning help or transportation or whatever you need. This document goes to the next bureaucracy, the 'Zorgkantoor'. They then ask you if you would like them to provide you with the care (natura), or would prefer to arrange everything yourself.
We opted to arrange stuff ourself, so we can pick nurses, and arrange when and how the care is done. Also this allows us to pay Louise and myself a bit for the nursing services we do ourselves.

The usual procedure is then that the amount of hours is multiplied by an hourly rate (more for nursing, less for cleaning, etc..) and the grand total is your budget to hire nurses and carers with as you want. Here we are now running into trouble.....

To make sure that the healthcare system is efficient, you can only ever get 300,- /day, because otherwise it would be cheaper to send the patient to the hospital. Fine, fair enough. Unfortunately Noah cannot just go into any hospital, he needs an intensive care in a specialised university hospital. Which costs about 1500,- euro/day is what the nurses there told us.
We told them this, so they upped our maximum to 350,- euro a day, so we would get all the hours paid to us.

Now we are getting a lot more hours, because finally the CIZ has sorted out their paperwork, and made the right estimation of what care Noah needs. They send this new document to the zorgkantoor, who send us a new budget, taking into account the maximum of .... 350,- euro/day......

So the net result of writing letters, getting doctors reports, having hospital staff, nurses and quite possibly God himself calling the CIZ to get more care for Noah is exactly......0 (yes zero) euro/day.

And of course the @£$%heads at the zorgkantoor tell me that i should have opted to let them provide us with carers. Like we want even more people in our house. Like we would want to turn Noah over to people who got hired at the lowest possible price by idiots who work in that office. Like we we want to have a seriously ill child instead of a healthy one.

All I have to say is, don't leave me alone in a room with one them and a sharp object. Or a blunt object. Or even a stapler. Don't leave me alone in a room with a bottle of whiskey either by the way.

Any way done boring you all, so I'll throw in a few good bits. Noah is getting his first molars (kiezen in Dutch), the first two on the bottom are a bit through. You can see one in this picture, if you can zoom in far enough.


Of course it is getting difficult to find a picture without his hands in his mouth. Still, he sitting better and starting to stabilize himself with his hands when he threatens to fall.


We got it! A smile on camera!



Since we are now sitting on the floor on his blanket very often the couch is empty for Lilo to occupy. Of course in style, as a proper princess. We knew those lambskin cushions would prove useful.


So enjoy, and we'll update again soon,

Thijs

A busy week!

Oma and Opa's 40th wedding anniversary, our first holiday, Noah's first birthday and Papa turns 35 - whew!
I could write a long story about it all but instead, for now, I think I'll just add some photo's for you all to enjoy .

Enjoy!

xx the Drostens

Big smiles at the GretaBonteKoe!


The Ikea Bakfiets (boxbike)!


The puzzle is complete so a well deserved beer!


Noah relaxes while oma and opa greet their guests!


Happy Birthday Noah - 1 Today!


A bed filled with presents - I could get used to this! Thank you everyone :)




Entering the zoo

Noah meets some fish, "hello Dory!"

After a busy visit, the dudes chill out together.

"What a great birthday!"

Noah picking up music tips on papa's birthday from Baart.


How can we have a blog update without a bath video?! Impossible! Here is Noah in the bath, splashing the nurse at the GretaBonteKoe. Mummy is standing well back out of range! :)

Time for an Evaluation!

For those of you who don't live in the Netherlands, it's customary every quater to evaluate your work relationship. It's a semi-formal meeting where employer and employee discuss what is going well and what could be done differently.
When I first moved here I found these evaluation meetings so akward and difficult, but over the years I've gotten used to them and I even find they are a good tool as long as you're open and honest, after all with this type of conversation you may hear the bad as well as the good things about yourself!
With an evaluation you have the opportunity to sort things out before they become a problem, take a moment to see if you're going in the right direction and take stock of what you've done so far. This week it was time for an evaluation with Kinderthuiszorg, the nursing agency. We made the appointment a few weeks ago and I have been thinking about things ever since. I've looked through the old blog entries, wow! what a journey.

The thing is, it's easy to get bogged down with stuff, especially when you get so tired. Recently I've remembered something that was said repeatedly (and to my great annoyance!!) to me as a child, "count your blessings" and annoyingly enough, Granny was right - you do feel better when you realise how many good things are in your life.
Yes it has been a struggle, yes it is hard work, but it is REALLY worth it; Noah is such a joy. We've got fantastic people supporting us. We've been so lucky with the people that come to the house to help Noah with his development and care. Everyone loves him and enjoys being with him. As a parent, we're obviously biased and think "of course they love him, how could they not", but apparently not all kids are so sunny natured and relaxed - who knew??!!

We've been really busy these last few weeks with hospital visits and getting organised for our holiday.
Noah's routine check up, heart echo, and surgeon appointment (regarding undecended testicles) all went well. His heart is strong and the defects are very minor now so they don't need to see us for another year and his medicines have been reduced. They are going to wait and see regarding his testicles as one is easy to decend and the other more complicated, so at the moment it's not a great problem so it's better to wait and maybe combine his treatment with another surgery so that it's all less traumatic for Noah. The routine check up was quite frustrating in that it takes up a lot of time, Noah is quite stressed from all the noise and comotion of the hospital and ultimately it's just a way to keep in touch rather than a useful visit. We have a revalidation doctor who is very helpful and useful though, so life keeps it's balance. Noah, despite his stomach flu, now weighs a decent 11.6 kg and is now 79cm in length. He's got 8 teeth and is working on his four molars, yes - all at the same time! Sigh!! No rest for the wicked!! :)
Noah has been doing great work getting off his machine. He's now breathing for himself on average 7 hours a day. When he's on his machine he no longer needs any oxygen. Huge step forward. We're trying to see how he does without his corset on, it's been so warm, and Noah cannot easily get rid of his heat (one of the genetic complications is that he has less sweat glands than normal). So far he's doing really well, we're keeping our fingers crossed on this one.
Noah is improving at a startling rate and we're so pleased with this. We're closely monitoring how much energy this is costing him as we don't want to tire him out too much, he still has a lot of muscle repairs and lung development to do - and that all takes a lot of his energy. We can't help but feel hopeful though and this all helps lighten some of the load on our shoulders.

My new thing I have learned is that it was much easier to plan network repairs and outages than it is to take one small child on holiday!! Still, we are really looking forward to it. It's now 01:30am on Friday morning, and we're finally packed - at least as far as we're able to, (he's still using some of the equipment), but we hope to be on the road by 10am this morning. Hahahahhaha! I some how doubt this but we have high hopes.

So it's a short-ish post today and sorry no pictures, but we're looking forward to seeing many of you at Chris and Lex's anniversary on Sunday. Once we're settled and back from holiday we will have lots and lots of new photos to share.

Take care everyone, hope you're all enjoying this lovely heat wave and not having to work too hard.

xx The Drostens

p.s. In the previous post Noah is playing with dried peas and NOT kitty litter!! ;)

Living the good life!

So here we are, living the good life at long last.  We're in the luxurious position of being able to ask for nursing help whenever we want.  The trouble with luxury is the amount of decisions you have to make.  I mean, do we want one full night sleep this week or two; shall we have someone for two short work days on the weekend or enjoy one long day?  Choices, choices - what to do!  It seems like I've spent a week looking at my agenda and calculating rates.  Well at least we are finally all arranged and sorted for July.  

Being a parent makes me wish I had managed to get promoted when I was serving in the RAF.  I just can't believe how organised you have to be, and I don't seem to be able to master it at all.  So maybe, if I would have made it to the lofty rank of Group Commander, I just might have had enough practise to have mastered the military precision it takes to get one child ready for a trip outside.  

I remember quite a few years ago watching in awe as my friend Jaquie got herself ready for work and her two kids ready for school - it was amazing! They were out of bed, washed, dressed, fed, lunches packed, individual changing bags packed (extra clothes, pampers, etc.), Jacquie was all neat and presentable and everyone was off and into the car within an hour!!!!  If I hadn't seen it with my own two eyes, I would be calling myself a liar.  

Other mums keep reassuring me that practice makes perfect, hmmmm, I will have to trust them on this, but so far ... well, let's just say I need more practice! 

I'm feeling really impatient as I can't wait for the delivery of Noah's new furniture.  As mentioned previously, we've got on order his bath, a buggy, a car seat that can turn, making it easier to load Noah and all his equipment into the car, plus a box and a bed. All of these things will make a dramatic improvement to our situation and so I wish they would hurry up and deliver them yesterday!  :)

You've all seen how much Noah loves his bath from the previous post, but this last week he's had stomach flu so it would have been so nice to be able to wash him properly. Plus it's nice for him to be able to float and we all know warm water around a sore tummy is very soothing.

All this beautiful weather, I just want to be able to put him in a buggy and go outside, instead of all the construction work we have to do with the current car seat / pram set up that we have, Noah is almost growing out of the thing and he only just fits , so he's not that happy with being squished into it.  My back will be very happy when we get delivery of the higher and roomier box plus it will be great to see Noah be able to roll about freely in it. Hopefully we'll hear something back from the council next week about when it all gets delivered.

Something I'm really dreaming about is finally being able to snuggle next to Noah on his bed in our pyjamas and read him a bed time story.    How cool will that be - VERY COOL!   

Talking about cool, have you checked out the GretaBonteKoe website?!  Only 19 sleeps till we're on holiday! :)  I've been busy shopping for holiday clothes (of course!!) and found the cutest sun protection factor 40+ swim suit for Noah with a matching hat - he's going to look so cute, very pale but very cute! The Hema has also been raided for some cool dude rompers and shorts and grampy Bazzard has also been put on the alert and is busy shopping back in Wales. So I wouldn't be surprised if Noah needs a bigger suitcase than Thijs and I put together, but that's the price of being a dedicated follower of fashion! 

Keeping Noah cool in this weather is quite tough.  He doesn't have enough sweat glands to keep himself cool, he has to wear his corset which makes him very warm, and of course he won't drink anything just yet, so the shopping wasn't all about fun.  Thijs and Arie, (one of Noah's nurses) were busy putting up a ventilator fan/light above Noah's box today and that helped a lot with keeping the area around him cool.  I had a good idea of trying and find one of those battery operated mini fans so that we can take that with us when we go out with him in his buggy.  It's either that or the PGB has to pay for a "punt wallah" to follow him around! (You may remember the punt wallah that the Seargent Major is always screaming at for falling asleep at the end of every episode of "It ain't half hot mum!")

While we're on holiday it will be Noah's birthday, and as mentioned we're going to Burgers Zoo in Arnhem.   If people want to meet us on that day please leave a comment/message or call us and we'll arrange something.

Noah continues to do great with his development.  Even though he's been sick this week, he's still a big lad.  He has officially been recorded, (from our visit to the hospital), as 78cm and 11.2Kg. We've noticed this weekend that 4 new teeth are starting to erupt in his mouth.  On the top it's the two canines (hoektanden) and on the bottom 2 molars (kiezen).  He has 8 teeth broken through so far.  It looks like Noah wants to get this teething thing over and done with as quickly as possible.

Noah is getting quicker and more adept at grabbing things, you have to be VERY quick with suctioning him now, otherwise you have entered the Noah's championship tube wrestling arena!  This boy has a really strong grip and does not want to let go - I'm sure Lilo has been giving him tips!  There is no way Noah will lie down anymore, he wants to sit up and oversee his domain even when his head is drooping with sleepiness. Noah is finally back to being the happy baby he was when he first came home.  It's really wonderful.

The biggest and best improvement by far is that Noah has been managing a steady 7 hours a day off his machine (with breaks in between) plus we've been lowering his oxygen and he's been managing on 0.2l/min as opposed to his 4l/min that he was on prior to his canule being replaced from 3.5mm with the larger 4mm.  He's far more alert and playful plus really curious about the world around him.  

Thijs has yet again spoiled me with a lovely dinner tonight.  We are trying to be a bit more healthy and so we had grilled Haloumi cheese with spiced vegetable cous-cous.  Yummy! Since I have an ENORMOUS sweet tooth, Thijs made a really tasty desert out of fresh Apricots, marzipan and puff pastry.  (Some of you may know what a huge chocolate monster I am, so the fact that this desert is made from fruits makes it healthy in my book!).  I surprised myself and totally enjoyed it!  Thijs bought a new dessert wine to try out, Monbazillac, and it really complemented the dish. We're thinking of adding a recipe of the week blog entry for your amusement. Let us know what you think of that idea.

  

Without further ado, I shall now shut up and leave you with a video of our Ginger Nut / Gember wortel for you to enjoy.  

Bye for now,

Louise

 

Zen (with LOTS of photos to prove it!)

It is apparently a very Zen like state of being if you live in the now, not thinking about tomorrow or yesterday but instead just live in the moment.  I'm not sure that many people would describe parenthood as a state of Zen, but is does have similarities! For example, time has no meaning, it is purely elastic.  Some moments last forever and yet weeks seem to fly by.  Since Noah is out of hospital, time has certainly flown past.  So many new things have happened:

Noah's friend Kalmin turned 1 year old on May the 18th.  Happy birthday Kalmin.  Huge congratulations are in order for graduating to breathing free, without your ventilator. Way to go! (Kalmin was also born with CHAOS so it's great knowing another strong young man who is beating all the odds).  You can follow Kalmins story via Kalmins CarePage. (Note! You have to be a member of the site, which is free, to view his page).  

I called our friends Bas and Marloes to find out how their pregnancy was progressing, and find out the baby is a week overdue!   After wishing them well, Floris entered the world on the 4th of June, we can't wait to meet your son.  Congratulations and 'Geniet van jullie nieuwe aanwinst'. 

Chris and Lex, (oma and opa), will shortly have been married for 40 years.  That's 10 times as long as Thijs and I.   There are not many people that I know who's parents are still together, my parents split up a long time ago, so I am quite fascinated by what exactly 40 years of marriage can mean.  They met in university, so probably they went to each others  graduation.  They raised  two children, WOW! I'm starting to know how tricky raising one is, and they did it twice!  They've helped each other through the loss of family members and stayed strong for their children when they needed them.  Plus they're doing a great job of being oma and opa to Noah - here is Lex with Noah, Chris is just out of view.  It just goes to prove you don't need expensive toys - just some paper and Oma and Opa to keep you amused!

I observe people, it's a thing I've always done, and when I see Chris and Lex together, they still laugh at, and with, each other. They explore places and travel long distances in the car together, if that's not love I don't know what is! I know how much the Dutch like to keep things understated but I think 40 years of marriage is something really special, and we're all really looking forward to raising a glass at their 40th wedding anniversary with the rest of the family and friends. Congratulations Chris and Lex.  

Noah is 11 months old - how did that happen??!!  Noah is an easy measure of the passing of time.  So much changes with him so quickly, I swear I only have to turn around and he's doing something new by the time I turn back. 

I've enjoyed my first ever mothers day - lots of cuddles for mummy!

 

He now has 7 teeth, (busy with 8, 9 & 10 - gulp!), and weighs a whopping 11.6Kg and is 78cm in length.

Once put into a sitting position, he can now hold it for up to 30 mins.

He can baby sign, "mamma", "pappa","sun", "Hi", "who's there", "spider" - I sing a little rhyme about a spider and he makes a sign to let me know I have to sing it for him - NOW! :) 

He can also make a signs for his favourite TV characters out of 'In the night garden', "Makka pakka" and "twittifer birds" .  I use this DVD to help introduce new signs to Noah and to just have fun with a sing along.  It also tires him out before going to bed - sneaky mummy!

He makes kissing sounds and is now busy trying to learn how to click his tongue.

  

We've been enjoying some free time with the help of Ben and Kinderthuiszorg nurses and also getting Noah used to the outdoors.  

We've been able to enjoy a few evenings dining at Theo and Patricia's restaurant. Total heaven!

I've had some time to enjoy a girly day in Amsterdam with friends, getting pampered with a new haircut and a pedicure. While I was off in Amsterdam, Thijs, Lilo and Heleen took Noah for a lovely walk through the dunes and on to the beach. Here is Heleen and Noah in the dunes, Lilo is the little black dot in the distance!

Here is Noah smiling under the parasol. 

And of course no trip to the beach is complete without a drink at the strand-tent!

To top the day off we enjoyed a fabulous home cooked dinner, (cooked by my talented husband) - fantastic!  

Here's a close up of our starter as it was so delicious.  Thijs adapted a recipe from the 3 michelin star The French Laundry cookbook mmmmm! "Tartare of tomato with french beans, a herb salad and chive dressing".  We opened a bottle of wine we brought back from the USA to go with it, a Gallo 2004 chardonney and it complimented it perfectly.

On the administrative front, FINALLY we have a good result from the CIZ.  With a lot of hard work from Christa & Trudy, (from the Sophia KZ)  and Heleen, (from the Kinderthuiszorg) we won our appeal and got the full support needed for Noah.  What a blessing and a relief it is. 

To celebrate, and re-charge the batteries, we've made plans to go on holiday in July to the GretaBonteKoe Zorg en Logeerboerderij in Aalten and I am so excited.  It's a place where Thijs and I can relax and Noah gets looked after by nurses and everyone has a great time - Hooray! 

Other good news is that we're getting a new pushchair, (kinderwagen), which can take the weight of all Noah's equipment.  So we should shortly be a bit more mobile which is great especially with all this good weather we've been experiencing.  Here is Noah being fitted for his new pushchair:

We will also get the big bath and bath seat for Noah to enjoy a good splash around in - I'd better warn the neighbours about an increased flood warning! Hee-hee. :)  

As if that wasn't good enough, we're also getting a larger and higher box, (which is a really useful type of elevated play pen the Dutch have to keep small children in a safe area - see photos).  Noah is so big now that it's playing havoc with my back so I for one will be glad to be able to work at a more comfortable level.  I think Noah will get a kick from it as well as he will be able to see out much more.  

So all in all the future is a much brighter place now and there is lots and lots to look forward too.  It feels like my world is starting to open up a little bit and that's great.  

We realise that it's taking a lot longer these days to update the blog, and it's annoying if you keep checking in and there is nothing new.  So just to remind you that if you subscribe to this blog you will receive a notification via e-mail whenever a new update is posted.

Anyway, hopefully you've enjoyed the all important pictures to show you how much Noah is changing.

Bye for now,

Louise