Trier trip

It was a while ago, but we actually managed to go away for a weekend, just the two of us.

We decided that as this was our first holiday in about four years (not counting family visits to Wales, that is different), that we should spoil ourselves. So we booked at an exclusive hotel/restaurant. It just won a price for fancy design: 

For us maybe just as important it also has two michelin stars for it's cooking. But the frist night we had to eat in their simple wine cellar:

You can see the chef in the distance on the magazine. We actually met him, and he was really friendly.

So: Off to Trier the next day to walk of the breakfast and build up an appetite. Trier is full of nice buildings, so here are just some of them. Notice the clear blue sky as well :-)

 Palace and Roman throne room in the background

 Random street view

 A very fancy grave stone. When you are a very influential bishop you get these things.

 Churches, pretty interior gardens, more sunshine, half of the town is a pretty postcard.

Oddly enough this town also produced a filosopher in whose name a lot of revolutions were started:

Walking back to the hotel, you can see the vineyards everywhere. This one is actually owned by the hotel, and we had a glass from grapes from this vineyard (a few years ago).

Can you spot the differences with the previous nights food? We could taste it! It was even better.

 One more just to make you jealous. Belly pork with a bit of caviar....

This is the hotel, with the old wine cellar on the right, the new design hotel on the left.

 And for those who don't like the fancy stuff, they also make: Bitburg.

Noah stayed at home with two nurses, so they promised to take some pictures to show that he also enjoyed it. We are not completely convinced, but judge for yourself:

You have to do my hair first! Stop taking pictures!!

 Are you sure you know how to cycle? That is not how daddy does it.

 Phew, you landed us in the canal! It's a bike!!

Hard work all this cycling. I'd better take a break.

There we go, catching up month by month I hope. A bigger update on what 's going and how we are all doing next week I hope.

Thijs

Party Time

Hi everyone,


I know we promised you a big picture update, but before that we wish to invite you to Noah's birthday. We will celebrate his birthday together with my own, on Sunday the 10th of July. The party will start  around 15.00 and end around 20.00. Please let us know if you're coming and would like to have a bite to eat.

We hope to see you at the party.

Thijs

Sometimes it's just 5H1T!

Hi everybody

It's been a bit too long since our last update and I know some people have started to worry. We're all doing well, it's just been a time of trying to catch up and trying to get off this mad merry go around that we're on and take life a little slower. So even though I've been taking masses of photo's, I never really got around to writing and posting. Today is a beautiful day and I really want to get out into the garden so I'll just write a small update with a promise of lots of pictures and a full update to come ... deal?

Since this new year, Noah's physical development has just astounded us. Actually it's pretty hard going trying to keep up with the pace of change sometimes. He is walking with less help,

working his way towards crawling, getting some more fine motor skills, and even trying to cycle.

Perhaps that's why his tummy distressed me so much. The doctors don't know what's wrong with his tummy - there are limited tests, which Noah has had and passed. In my techie mind the phrase "don't know" means "need more input"! So I've been driving everyone demented with all of my data collecting and "input". When I say input, I mean Noah's output... And trust me, we even had to ask the doctor what normal is, because an average week looks like this. As an unrelated fact, our washing machine broke recently.



 
 

 

Finally, at the point where my head was about to implode a kindly nurse sat with me and explained that "sometimes the body just needs time to work it's own miracle." Big huge lights went of in my brain "WOW! OF COURSE" ..... followed swiftly by .... "WHY DIDN'T THEY JUST BLOODY SAY THAT!!!!!"
That conversation helped me get my brain out of the groove it had been trapped in. It was followed by a regular home visit from the "breathing team" nurse, Christa. We had chats about what was up and coming for Noah with regards to hospital appointments and possibilities surrounding Noah's cannule. She asked me why are we considering letting Noah going under full narcosis again? She was so thrilled at the changes in Noah (she hadn't seen him since December), so why would I put his system under such stress again?

Anyway, lots more has happened and we will let you know about it all, in detail and with pictures, soon!

Louise

Hospital madness

Hi everyone,

Just a quick update from our visit the hospital. We asked for as many as possible appointments over the two days visit, and we got them!

Monday morning 8.30 the eye doctor.
We were there a bit longer than expected as Noah needed some eye medication so we were there till about 10, with some waiting in between.
We had to quickly return home, as we'd run out of time to complete our packing and so we needed to finish that and return just in time for our 12:30  appointment with the nurse of the breathing (machine) team.
At 13:00 the doctor from the breathing team.
At 13:30 an electro cardio gram, (Noah's night time heart rate has been dropping to 39 bpm!). 
At 14:00 the hospital social worker, followed at 14:30 with the IC nurses that will take care of noah. 
15:00 the dietist dropped by.
15:30 the IC doctor.
Finally at 16:00 the ear nose and throat specialist.

You'd think that would be the end of day one, but oh no! Then the IC nurses from the evening shift were next to visit followed by the hospital vampire! Noah needed to have some blood taken for his blood gass control levels. At 17.00, we started preparing him for bed, but it took till 19.00 for all the hospital equipment, monitors and everything to be set up.
The visit to the hospital is a chance to monitor Noah through the night with lots of different systems. The idea is to pretend like Noah is at home, so they can see how he does 'normally'. He's in a seperate room from the other patients and we, the parents, are responsible for his care, just like at home.
We quickly went to make and eat some dinner at the Ronald McDonald house around 19:30, back at 21:00. Louise stayed the night in the Ronald MacDonald house, whilst I took care of Noah through the night at the hospital.  So I put his food on, and waited for him to settle to sleep.
At 23:00 another blood sample, so I got to sleep just after that.
00:00 Noah's alarms went off  a few times till around 02:00.  It felt like I'd just dropped off to sleep when ... at 3:00, they needed to take another bloodsample from Noah.
At 4:00 the night nurse came in and apoligized, but the doctors decided they needed another E.C.G., while he was sleeping. Well, that involved 10 more stickers on his chest, so Noah was not sleeping anymore by the time we had stuck them all on.
Oh well, 5:00 his food needed to go on, as he was not allowed to eat after 6:00 and it takes an hour to feed him.
Louise came to take over at 7:00, so I went to the RmcD to try and catch some sleep... Unfortunately the hospital is a big building area, as they are building a completely new hospital, so that didn't work out too well either. Louise didn't sleep much either as the worry kept her awake.

Oh well, operation day was more quiet, but basically just a long long long day of waiting, (and of course the worry that it will be alright). First waiting for when he was going in for surgery, and then waiting for when we were allowed to leave.


So what were the results from all this waiting and meetings?

1. His airway looks good, they didn't measure it against the previous time, but it looks allright. Some scar tissue around the canule, and no news on his vocal cords.
2. He now has a smaller size size canule to allow/force him to breathe through his mouth and nose more. Still no real sounds though.
3. Noah came home ill (again). A nice 36 hours of vomiting followed by being blocked followed by... well check our next post.
4. His eyes are okay.
5. Noah's heart looks allright, but his extremely low heart rates have the doctors worried. A follow up investigation is planned.
6. We decided to start seeing a psychiatrist, as our stress levels on even approaching the hospital are out of all proportions. 
7. The dietist told us he should have more food, he lost about 1 kg in weight in the last month. He has also grown to a cool 1 meter exactly. Other then more food, he does not drink very well (at all really), so we need to give him more water when he eats by himself.

So that is 2 days  in our lives, we'd call it "Sleepless in Rotterdam" if it was at all funny or romantic. I'll add this song to describe a bit better:



Thijs

Christmas & New Year update

From one moment to the next it doesn't seem that much has changed, and yet just one post later there are some new things to share. Noah has good days and bad, just like any other child, so all of these activities are not a daily occurrence but more of a good sign for the future.

Noah continues to have trouble with his hands and fine motor skills are a future goal. So it great to see him reaching out for his colouring pencils, although he mostly likes to drop them on the floor, he does sometimes with encouragement like to make a mark on the paper :)



It's not all work ... there are some relaxing times too. Noah loves relaxing back on papa whilst they are watching TV, (Noah's mini TV screen is just out of shot).



The week before Christmas they came and installed a stair lift. It's really saved me some energy and muscle ache but I wouldn't be honest if I didn't say that it was so upsetting when it was installed. We'd planned room for a chair lift, if it was necessary, but we didn't really come to terms with the fact that it would be needed. Still, it's here now and Noah doesn't seem to mind it a bit, in fact he's a bit like a king on his throne. :)


As if the chair lift wasn't exciting enough, some gifts appeared under the tree. "Are all these prezzies for me?" ..... wait and see!



I just loved the fact that we got a lovely white Christmas. The house looked very festive and welcoming. I love our new home.




Christmas Day

We'd decided to have a relaxing Christmas day. Just some nice easy food and good friends to share it with. Noah wasn't feeling too well leading up to Christmas. He had a horrible cold and just before our guests arrived Noah had vomited and was having a little sleep on the sofa to recover.

He soon felt better once his posse arrived and he got a lovely hug from Gijs.



Ties and Gijs quickly found the Santa hats.


Ties thought Santa was cool!


Not one but two men in the kitchen preparing us our dinner, that's not bad at all!



Dinner was so delicious we ate it before we took some photos, but the dessert was so spectacular that it was obvious a photo was required. (I know, it was supposed to be nice and easy but you know Thijs!!!) You're looking at an orange souffle .. yes, served in an orange ...then chocolate mousse, white chocolate coffee ice cream, egg liquor with some whipped cream with a chocolate smudge cake (there's smudgy warm chocolate in the middle!). Yes, chocolate coma ... err I mean chocolate heaven was achieved ;)




Boxing Day

For the second day of Christmas the family was hopefully going to arrive from Doetinchem. I say hopefully because it had been snowing and we weren't sure how bad the roads were. Luckily the Dutch are a lot more organised about these things than in the UK, and the journey to us was uneventful. Since there was going to be a few more of us, I really wanted to go for the UK traditional turkey dinner. Our local butcher was sourcing a free range Norfolk Black turkeys bred by a Dutch farmer so I couldn't resist.


Who wants Turkey ... me! me! me! :)


Here are the "lads" sitting with their starters. Maarten had baked bread 'soup bowls' for the parsnip soup and it was yummy.


The main course was served with all the trimmings, so pigs in blankets (sausage wrapped in bacon) and cranberry stuffing. There was of course the traditional brussel sprouts, roast potatoes and gravy but I didn't think you'd want to see a photo of that!


Everyone joined in pulling the Christmas crackers, reading lame jokes and of course wearing the silly hats :)

I'm not really that into turkey but even I was surprised how lovely it all tasted. It was a great compliment that people went back for seconds and even the brussel sprouts were eaten. Glad I wasn't in the car back to Doetinchem though! :)

The traditional dinner was rounded off with the traditional mince pies and Christmas cake. Not forgetting the traditional Dutch coffee with drinks!


It was a wonderful way to celebrate Christmas. It felt like old times again, cooking and a full table, great fun indeed :)))

The New Year

Our fairy godmother arrived on new years eve. 2011 crept in quietly for us but Lol was kept awake with the fireworks till around 4am!! We didn't really get up to much as we were all a bit festive seasoned out! We did catch a lovely exhibition of Dutch masters in the Maurits house museum and we took in the new arrivals at the Blijdorp zoo.



Happy birthday fairy godmother!

Again too much enjoying and not enough photo taking so here was my blurry effort at the end of a fabulous meal and ever so slightly tipsy, but we did enjoy ourselves a lot!


Magic always happens with the arrival of the fairy godmother. This time it was Noah deciding he now wants to eat ... but only crunchy things. Luckily Lol arrived with a mountain of crunchy kiddie food and so we began to feed the animal.

crunchy food



This then lead to the animal wanting to feed himself ... erm ok?!



As ever, Noah does everything in his own time. No matter how much we worry or hope or fear, everything happens at it's own pace. So this is where I realise that it's time to stop waiting for the next operation, the next milestone, the next .... well, the next anything really. I want to be happy with where I am now. Realising this and achieving this are two very different things but that's what I'm going to focus on this year ... being happy in the now.

Happy 2011 all. xxx

Snow fun and other pictures.

Hi all,

We promised to be better at posting pictures, so here we are!
First of all, a few pictures from when my parents were visiting. Sunday roast, and our little man, not looking his Sunday best, but oh well..... Even little kids can a day were they can't be bothered and put on their sweatpants.

Roast rib of beef, roasties, yorkshire pudding, the full works .... everything! Yummy!! :)

And then... there was snow! First a little bit, which was good as we had some trees removed from the front garden. By professionals this time, as they were much to big for us to do by ourselves.

Before:
Tree 'Surgeon' hard at work. In this case tree butcher would be more appropriate maybe...

After:

When there was only a bit of snow Noah could still go out in his walker, and in the push-chair, but then it really started snowing!

Seems hard to imagine now it is all gone again, but we had lots of it. Everyone loved it, the dog loves running after snowflakes, everything looks really pretty. We had my old sled that my parents brought over the previous week. It even holds the suction machine and the emergency pack that we have to take everywhere.

Noah loved the snow, he started crying when we took him back inside! Any sightings of yeti in Leidschendam can be blamed on him.

He did find it hard to stay sitting still, and keep his balance, but he has grown so much stronger over the last year that he managed to keep upright. Not bad for a kid without tummy muscles!

Lilo enjoyed it too .... but the tennis ball was more of a snow ball! Notice Lilo is getting her father Christmas white beard too? (we're not to mention that she's getting old!!)

After all that snow fun it was time for a nice warm bath, to get all warm again.


Last weekend, we had a party, so my parents looked after Noah, and we could go. It was a 70's theme party, so we had to dress up for it. Here I am together with Paul, a friend of ours.



We'll save you the rest of the pictures, allthough we left early, so probably did not witness the worst.....

Only a week to go till Christmas, so that will probably be our next update.

Thijs


UPDATE: It is snowing again here, already 15 cm on the ground, and more in the air.

massive photo update!

Hi Everyone,

It has been a while, for which we apologize. Noah's operations have been very exhausting on all of us, both physically (lack of sleep in the nights) and mentally. Even now, after the last operation we are still uncertain if his new airway is stable without the support of the stent. The doctor will check again, probably somewhere in February.

So, a lot of uncertainty and lots of changes. This is always difficult to cope with, but we have tried to find ways to let go of some of the stress. One of the best ways is attacking stuff. As we don't want to attack people we decided to target the garden:

 That is what is left of the maple tree in the back. It took away a lot of light, so we can sit in the sun again (well, next summer hopefully). Unfortunately just chopping it down is the easy part of the job, it needs to be taken to the skip, sawed etc....

Louise took care of the branches while I sawed up the logs, to get some fire wood. It still needs to dry, so no log fire going yet.

We needed some serious tools to get rid of all of the branches, so i bought this small trailer. Let me know if you need it, it is standing in the drive way most of the time anyway.

And a nice sunny backgarden is the result:

Louise even dug over the earth to prepare for planting next year.

Now on to the more important pictures. First of all some older pictures from when we were in the east, at the Greta Bontekoe. Here Noah is trying to paint, with the help of the nurse.

They also took everyone to a indoor petting zoo, but bunnies are a bit boring.....

It was nice to have time to do some other stuff, as there was 24/7 nursing care.



Noah will start going to the revalidation center more now he has finished his operations, but here are some pictures and a video of what he has been doing recently:




He can't play with tennisballs at home, the dog would get them before him. She loves tennis balls....

This is an exercize to help him develop his communication skills. Everytime Noah presses the button we stack one more block, utill he gets the push the tower over.

And he is trying to walk by himself. This is still very difficult, but at least it is going better slowly.








Going of the slide is also a favorite, as is walking around the hallways, as fast as possible please!


Dragged along



Slide




We are trying to be as organised as possible, so we do not run out of medical supplies, and can let the nurses take care of stuff. Hopefully this will leave us some time to relax, and maybe even go out for dinner!



well that is the plan anyway!

One last occasion that we couldn't resist: Sinterklaas arrived in Leidschendam, so we took Noah to watch. Dressed as 'Zwarte piet' of course.






We hope you'll enjoy the pictures, and see you soon,

Thijs