Sunday, June 28, 2009

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!! ;)

Sunday, June 14, 2009

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

 

Tuesday, June 2, 2009

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