24X7

Hi everyone,

Not even a week gone and another update? We must be spoiling our readers!
Well, not really, but still.... It's nice to share this news with you;
Noah has passed his breathing 'exam' at the hospital last Saturday. Noah spent 24 hours off his machine from Friday till Saturday whilst being monitored for CO2 levels. We went to the Sophia on Friday afternoon to settle in, and Noah was hooked up the a whole lot of measuring devices. They even made a video of him while he was sleeping to help them see what their analytical data was telling them, and just in case there was any strange data logged they would be able to use it as an extra tool to make sense of it.



The next morning we were given the unoficial results that Noah had passed and we were all allowed to leave early, which was good as we had time for a luxury celebration breakfast before doing the next round of tile shopping for the house. (Yes, we still continue with the building project reguardless of life changing results from the hospital).

Christa, our contact person at the Sophia hospital phoned me today to tell me he passed, and the advice from the hospital is to take Noah of his breathing machine completely. We do have to keep a sharp eye on him, as any illness or even a little cold will set him back. So today is THE day, Noah is off his machines for 24 hours.

If you can cast your minds back to Noah's 4th month in the hospital, you may remember that there were 2 criteria that needed to be met before Noah could be operated ....
1. Noah must weigh above 7Kg ... check
2. Noah must be able to spend 24 hours off his breathing machine.... check :)

So very soon the specialists will meet shortly to discuss a plan. Yes, it's a first for everything!! We hope to be informed in around 2 weeks what is the plan of action for Noah's surgery. Not that he will be operated in 2 weeks, but that we will know what the surgeons intend to do, how it should be carried out. This is the first time that this operation will be done in the Netherlands, as far as we know it's the first in Europe, so it's a bit scary and a very big deal. I know that Noah is in your thoughts and prayers, but could you please add the medical staff and surgeons to your list? :)

Noah has also had his first hair cut at the barbers. He was really relaxed and loved the pretty hairdressers fussing around him. He just sat on mummy's lap reading one of his favourite books.



On a previous post we mentioned that Noah has been to creche. One of his favorite activities is the walker. We were allowed to take the walker home for a weekend to see if it fits in with his activities and here's a special moment caught on film - I love the music playing in the background, it was accidental but it seems fitting, this is Noah working at walking. :)


At Creche Noah is going from strength to strength. He's learning about cause and effect, the ball falls in the hole - Noah can get it out!


He's learned to scoot down the slide. Which is amazing since before creche he wouldn't even try to move himself.

Noah also loves the swing. He's such a little Tarzan in the Gym hall!



We've also been scratching our heads for a long time on how to get Noah to try all the wonderful food that's available. However he's very intolerant anything being put in his mouth.
One of Noah's nurses, Heleen, has now cracked the case ... she poured water in her hand and "Hey presto!" we have the bobbing baby bird slurping up the water, or even thinned down food. We of course have this on video ... take a look ....Baby Bird



The house is progressing well. The builders will take a break for Easter, which is just as well as we're waiting for the Electricity company to move their meter. This apparently is a MASSIVE job and has so far taken the Electricity company 8 weeks to arrange. Note that it's arranged and not done yet!! Hopefully this will be resolved shortly after the workers return from their holiday. It's quite important that the meter gets moved as it is positioned exactly at the bottom of a very steep staircase.


Noah isn't yet fully mobile we wanted to make sure that the stairs are compatible for a chair lift (as a precautionary measure). This is one of the big reconstruction jobs in the house and without the meter being moved, we can't rebuild the stairs, which means the wooden floor can't be laid, which means the kitchen can't be installed. I just love monopoly energy companies, they are sooo user friendly!

Never mind, we can handle the stress, we seem to thrive on it!! ;)

House & Noah Update

Hi everyone,

It has been very busy here and unfortunately blogging is one of those things that get left behind. Exactly when lots of things are going on, we have no time or energy left to tell you all about it.

Oh well, time to catch up a bit.

First of all: We now own 2 houses, being rich (in debt) landlords for a few weeks. We signed the papers for the new house Monday morning, February 22nd. The builders arrived in the afternoon for a good demolishing session. Christian and Willie, my apologies, but the builder wanted to get started. I also think they enjoyed it....

Here is a step in the process of clearing the house. As the previous owners had died and their children had not cleaned out the house, there was a lot of old stuff. A bit creepy almost if you think about it for too long. Anyway, the open space was quickly filled with building supplies, and work has been going quickly since day 1.

Anyway, builders need money, and cash is still preferred for all their shopping so we had to handle more cash then I have seen in a long time. It felt good, until I had to hand it over.

Now, three weeks later the building process is really taking off, the central heating system/kettle has been  replaced and about half of the radiators are already in place.

The electricity has been renewed on the top two floors, and walls are getting plastered to finish off all that work.

Our bathrooms are stripped, and pipes are being put in place for the taps and drains. About 4 new window frames have been made, for their necessary places.

So what have we been doing while the builders where busy? Unfortunately we couldn't sit back and relax, but we have to work hard to get everything organized, ordered and delivered. So floors, kitchen, bathrooms, radiators etc. Running around to find stuff we like, and then find it at a good price.

Allthough everything is moving really fast, the house will not be finished soon enough for us to move before the 1st of april, so we have decided to take my parents up on their offer and stay with them for a few weeks. Hopefully everything is finished  before the 1st of may, and we will move to our new house around that time.




So what is Noah doing in the mean time? That is what you want to know, really, isn't it?
He has been doing really well, progressing in many area's. First of all he now goes to day care (morning care) at the medical revalidation center twice a week. He gets lots of new and exciting things to do there, and there are a lot of medical specialist with the group to help and to see what he could use a hand with.We have promised to just publish pictures of Noah, so you don't see him playing with the staff or the other kids, but he really does most of the time. It's a privacy issue, as not everyone wishes to become famous!


Anyway, here is Noah in their gym class, going down the slide.

As he still can't stand without support for more then a few seconds they also tried him in a special baby walker.He loves standing, and is slowly starting to realize that he can now move around by himself. It is a big mental step for him, as he has never been able to get around, crawling or walking.

There are also the usual games, singing, toys etc.

As he rreally likes his walker, we have one on loan from the medical daycare, for the weekend. Look at me walking about!

Another thing that was supposed to happen, was a test in the hospital to see if Noah can do without his breathing machine for 24 hours/day. Unfortunately he went to daycare for the first time just before that and immediately got a cold. So no test, as the cold really made his breathing more difficult. We have been working on it since though, and he has done a complete day without his breathing machine on three occasions now, needng his breathing machine only every other night for a few hours.
So a repeat test is scheduled for next friday, where all his vital signs will be monitored overnight. We also hope to speak to a few doctors to see if, how and when Noah can have his throath reconstruction surgery.

So more then enough to keep us busy, whoch explains the lack of blogging. It is a shame because we would like to tell you all the little details, and there are many of them.

Till the next, hopefully sooner update

Thijs

One year on!

Can you believe it! Noah is home for 1 year today. For those of you that have followed our story there is no need to say what a tremendous impact it's been. So here's just some photos to illustrate what a difference a year makes.

February 2009 ....

Noah is on his breathing machine most of the time and cannot sit or move unsupported.


He needed a corset to help him breathe and stay upright. The house was a disaster zone, we didn't have enough storage for all Noah's medical equipment or a safe work space for us.

He suffered from chronic diarrhea, and we were using the kitchen unit as a care area because it was the only place high enough and where we could get all the equipment around Noah.


February 2010

Aunty Anneke tickles Noah in his bed. The bed can be adjusted and tilted, so no more back ache after bathing, and it's a lovely safe place for Noah and his machines. But notice, no oxygen and no feeding tube attached, our little boy can go "wireless" for a time now. He still needs his feeding tube, but he only needs oxygen when he's really ill, that's a great improvement.


Noah isn't scared of going outside anymore. He loves it, rain or snow ... bring it on!! He loves his box as well. Here is a great adjustable and safe play space for Noah that makes it easy to change those poopie nappies (that never changes!!).


Noah can now support himself whilst sitting, and if he's sitting high enough, he can even stand. He doesn't need a corset anymore and he's much more active and aware of his surroundings.


Here is our little miracle standing on his own two feet.



We love you Noah. Mummy and Pappa are so proud of you.
Happy 1 year at home darling boy xxx

2010 - WOW!

It's 2010! Can you believe it?!  Do you realise we're now in the first decade of the 21st century.  It's now 10 years ago that we were all partying like it was 1999.  Historians refer to this period of time as 'the turn of the century'.  We're living at a 'turn of a century' - imagine that!
Shouldn't we be walking around in metallic boiler suits or mini skirts (personal choice applies here!) with flying cars whizzing past and 3D holographic advertisements should spring out at us and be personalised to our consumer choices.  People! Don't you realise? We're living in our future!!!

Yes, I realise I sound a bit freaked out.  It's just that usually the end of an old year and the start of a new one always brings on a reflective mood.  "Where have I been? What have I done?  Any regrets ... " and so on and so forth.  However this year was different.  I'm totally amazed at where I am!  It's 2010.  Ten years into a brand new century.
I live in a different country to where I was born.  I'm happily married.  I have an amazing child.  I have a great new house (more on that later!).  Wow, I never imagined a life so fulfilled and so good.  I know that may sound weird considering all the stuff that goes on but to be honest, my life is amazing.  I never knew I could be this person.    A person who has someone  that loves and supports them.  A person who has friends (yes, even more than 1!!!) that call and visit and that care so much about what's happening in my life.  A person that is welcomed into a big family.   A person that is a mother to the most wonderful child ever! (OK, the last one is a bit biased - but it's my blog so I can say what I want. :))  I have a really amazing and challenging job that I find totally fulfilling.  It's taken all my life,  a new century but finally I really feel that I should be exactly where I am right now and I'm very happy to be here.
Wherever you are in the world and whatever your circumstances are, I wish you an amazing and fulfilling 2010.

It's been a very busy period for our family over the festive season, so apologies for the lack of updates.  We had a lovely Christmas.  Noah's fairy godmother, Lol, joined us.  All that snow made it very exciting up until the 23rd as we didn't know if Lol's flight would be able to fly out to Amsterdam.  Lol lives in one of the worst hit regions of England, so we were very relieved and happy when she arrived safely.   We loved that it was a white Christmas and the whole family enjoyed going out in it.

Here's Noah wrapped up nice and warm. There's practically no room for him in his pushchair he's got so many warm clothes on! 

This is the mad dog chaising snowballs!

 

 A 'Fuut' enjoying a refreshing swim in the snow!

Noah had a huge pile of presents, but he was totally not interested in them, he had his 'In the night garden' book and that was all he needed.  Thanks fairy godmother! :)

We had a fabulous vegitarian Christmas dinner.   1st course - Tartare of 3 types of tomatoes topped with french bean & basil leaf salad served with a parmesan crisp and a drizzle of chive oil.

Our 2nd course was a vol-au-vent filled with wild mushroom ragout, with a side of blue cheese stuffed button mushrooms.  3rd course was butternut squash gnocci dressed with sage leaf butter.  Dessert was my all time favourite "Chocholate & Chocholate filled with chocholate and a slice of fruit to make you think it's healthy"; also known as Chocholate mouse, chocholate pudding with a runny chocholate centre served with poached pear in Champagne Cider!  Trust me - with this menu we did not miss that there wasn't any turkey!
Did I mention that Thijs is a FABULOUS cook? Well, he is! Thanks husband for spoiling us rotten :)

Lol also decorated the Christmas Cake, which we could have had with our coffee, but really .... we were full!

So this is the last winter we will spend here is our lovely home.  But that's OK .....

... We've finally found our new home! We're very excited, and worried and pleased and scared to death! All at the same time!  We've chosen a house just outside the Hague.  It's convenient for both of us, it's big enough for the 3 of us, plus all of Noah's medical equipment and hopefully allows us some private space to be able to go to when we need some space.  It has a lovely big garden and is close to everywhere!  There's a large shopping centre, a town centre, a petting zoo, a working waterway where lots of holiday makers travel during the summer months (a small disaster for motorists when the bridge is up!), all within walking distance of our new home.  It's a very pretty place and we're looking forward to living there.

However, it's what we like to call a "fixer upper", which means the house needs a lot of tender loving care before she'll be our home.  I know, I know ... why are we doing this again you're all asking?!  Again, it comes down to what we need versus what we can afford, and this is the best solution.  Actually, we hope when it's finished it will be wonderful, but then you know we are VERY optimistic people!! ;)  Here's a taste of how it looks now - which was all the rage in the 70's don't you know!
The Kitchen

 

The Bathroom

 

We haven't got the keys yet, so we're still hoping it all goes well.  After that it's going to be a mad dash by the builders to get it modernised and up to the standards required for Noah before the 1st of April.  Otherwise we'll be renting a room with a sea view!  Maybe you can understand why it's scary and exciting all at the same time now.  We just can't seem to live a boring life no matter how hard we try. :)

So time to finish off.  Noah is doing extremely well with his development.  He's coming along in leaps and bounds.  He's much more aware of his surroundings now and is a lot more curious.  He loves when we sing him songs and is fascinated with the hand movements we're doing (we are moving forward with using sign language now).  Noah doesn't seem to want to do the hand movements himself, but he'll place your hand into the right position!  It's very clear that Noah takes after his fathers side of the family, but it looks like he's going to get his geekyness from me .... Pappa brought home his new laptop and Noah was like a duck to water ... a natural!

xxx

 

 

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