Pictures and thoughts

EDIT 2-7 : videos added!


Hi everyone,

We have not updated for a long time. We apologize, and offer all the normal excuses. It has been a busy, stressful, frustrating and difficult time. We also have not felt like blogging at times, just because we have been very busy trying to straighten out our own thoughts, too busy in our own heads. I'll try to write more about that later in this post, but I feel that it is well past time to show you some of the stuff Noah has been up to. There may be a few other pictures thrown in, but feel free to skip those!

Let start where we left of the last time. A few wintery pictures to cool you down in this heat!

Here Noah is filling out his Xmas wish list (well.... it turned out to be in code, all random looking to us, but I'm sure Santa understands it)

 And look and behold: Lot's of pressies under the tree!

 The outdoor decorations, looking very festive on a dark winter night.

 And the indoor decorations:  Fancy Christmas cake and Mincepies.


Around Christmas time Noah's school/therapy center was closed for a few days so one of the nurses took him to a giant indoor playground. Fantastic picture opportunity, and she als made a few videos.

Him, a swimming pool filled with balls. My favorite!

 Let's get in there somehow.

Hmmm, floating about, hmmm fantastic.

 Sinking here. Do something!!

HEEEEELLLLLLPPPPPPPPP!!!!!

 No, she saved him, off course. And also found out that he likes the inside of a 'kroket' (a dutch deep fried snack filled with meat in sauce).

Also some video's they give a great impressions of the mayhem that is a kids play 'paradise'





Now we fast forward quite bit, as there is some catching up to do. We went for a trip to London and Wales. Unfortunate we were all ill, Noah first, throwing up for two days straight. Later during the holiday I got very ill as well, so Louise had to drive the whole way home with two very pale guys in the back. Oh well, at least no real car troubles, apart from the lock on the backdoor not closing all of the time....

 Washing vomit out of Noah's hair. One of our recurring pleasures this holiday.

A quick visit to Cardiff, including the rugby stadium (for those of you that missed it: Wales won the six nations here this year :-) )  .

 Luckily we managed to get Noah a nice Wales Rugby shirt.

Another fast-forward to a weekend away that we had together with Tom and Judith. We went to Mainz, in the German wine area. Mainz is not that special, but a nice town with a few things to see. Ideal for not doing much and relaxing. No worries that you may have missed something, or a rush to get to the next tourist trap.

So we went out for diner to a fantastic Italian restaurant. As a Dutchmen, I was also very pleasantly surprised by the bill. Eating out in Germany is a lot cheaper than here.

One of the highlights in Mainz: Stained glass windows by Chagall. All blue making the whole church feel very different from your normal church.

We also ended up at the weekly market, which had local produce, including lots of products from the local Vineyards :-). The chicken made a better picture though.



Another skip forward to Queens day, which was extra special this year as it was also coronation day. We planted some orange flowers to prepare (the flags went up on the day).

The schools all had a big party the day before, so Noah was dressed up all in Orange ( well, mostly as a lot of orange stuff was sold out)

Even his physiotherapy session was in orange!

It is quite difficult to keep your balance without good stomach muscles.

Back to class to make crowns.

Noah was more interested in eating the paper, apparently. Oh well.

With some help, he had a crown to wear the next day. We have no actual pictures of the crowning events, as we watched it on TV, and just stayed home.

A last two more activities in this update. First: Another visit to the zoo. we were very happy to be invited again to the zoo, for a dream night at the zoo.

It was a bit difficult to get into the zoo, as we had to dodge numerous wild animals......
Luckily they only wanted to shake hands and didn't eat anyone.

One of the new exhibits at Blijdorp is the butterfly greenhouse. Some butterflies have brighter colors then others, but that does not make them easier to spot. All in all a great new addition.

Another new feature is Ollie, the pet elephant. He is the new fashion accessory to have for this season! Including cool soccer ball net style carrying sling!



My personal favorite was feeding the giraffes, but it was so busy we couldn't take a nice picture. We tried to get Noah involved, but it was a bit difficult in between all the other kids.


Last but not least was a visit to 'circus boemtata'.

 Noah slept for a bit on the way there, which turned out to be a good thing. There was so much to see and do that he really needed all his energy.

It all started out with a show with clowns and acrobats, funny and very interactive. The clowns involved the audience, but also tried to immitate the acrobats.....

Noah was completely involved, following all of the action, watching the parts of the stage were the action was.

After the show all the kids were invited to visit the acrobats 'living quarters'.

Here we are in the house of one of them, with a big voile over all the kids. We got ot visit all three acrobats and they all had a program with lots of sensory sensations, light, wind, shadowplay and many more. 

 After that back for the big finale, with more jokes as well as performances.

And finally we all got to join in the last song and Noah got to dance with one of the acrobats.

Well that's it for the pictures. Why did it all take so long for another update? Well the short short version is that we are trying to come to terms with the fact that Noah is very likely not going to become a independent adult, but will need care for the rest of his life. This is a daunting perspective, and requires a different mindset from us. We have to go from 'If his throat is fixed it will all be better' to 'We need to find a way do this, because for Noah living at home is better' to 'We need to take care of ourselves, so we can take care of Noah better'.

In between this there are lots of other frustrations. Noah is on a homeopathic treatment now, which seems to work really well, but getting support from the hospital for it is near impossible. The nursing care that we get for taking care of Noah is cut by 25% which means two more night shifts to do ourselves. My work is extremely busy, with lots of my colleagues working overtime to get the deadlines. I have tried working extra, but i just can't keep it up, and our private admin suffered a lot.
All of this really interferes with us getting a long term perspective, making it more difficult to change. Every setback also disturbs our efforts to change/implement our routine which we need to keep i up for the long term. Also all change is difficult, and tiring, for everyone, us included.

Anyway, all we can say is we'll try to post more updates, maybe in a different format, just a short message a a quick photo.

I just hope that anyone is still reading and checking this site!

Thijs

UK Visit en Sinterklaas

Hi everyone,

Catching up to the present day, and as promised some exiting new things.

Let's catch up first. We had another trip to the UK a month ago, going to London and Wales. We visited Lorraine in London first, then went on to Wales to visit Louise's father.
While we were there it was Guy Fawkes day, a day when the British light fireworks to remember someone back in 1605 stopping a bunch of gunpowder going off. Strange habits, but never mind. The fireworks are set off as soon as it gets dark so we decided to see how Noah would like them. It sort of went like this:

Why am I out in the middle of the night? It dark here and boring!

 

Fireworks! 

I like fireworks! Big success all around. The neighbors helped a bit by sending up rockets.

And a good excuse for a bath to get all the smoke out of you hair as well.

So on to Wales to visit the grandfather. Not many pictures from that trip, we did some shopping and had only one remarkable incident. The car broke down one evening, while I (Thijs) was out on my own.  Luckily on my own,  because it took me almost three hours to get back to the house.  No idea what we would have done with Noah in the cold and dark for three hours.
On the plus side I broke down in front of a whiskey distillery, so I had plenty of time to sample their lovely products (and buy myself a nice bottle for christmas). Check it out here!   ..... (~Just happened to break down outside the only whiskey distillery in Wales .... yeah .... that's what I thought too!!! ~Louise)

Anyway, the next day the car had to be towed to a garage to get fixed so we had a excellent chance to gridlock most of Caerphilly. Never one to miss an opportunity we did immediately.

Louise didn't want to stay out too long, so she only got a picture of the tow truck pulling up, but whole town was quickly blocked. Anyway the car was fixed and we got home with just one day delay, so it all worked out in the end.

Now what you have all been waiting for. First a quick reminder of how Noah moved back in August/september:

And this is what he started doing in Wales, with little steps, and now more and more:


All this walking is very very tiring!

But, sleeping standing up just shows you how good he got a standing up by himself.

And a week later he had to show Opa and Oma how good he is at walking as well:



The last pictures are all from the sinterklaas party at school:

First Sinterklaas got welcomed in and Noah got to walk in with them.

 Then he has to check his big book to see if you have been Naughty or Nice. (Where do you think the copycat Santaklaus got it from? We know .)

Wait for a bit while the other kids get their turn.

And saying goodbye again. Zwarte Piet even got a hug!

And last but not least opening the presents! Noah is not into presents yet, but it is always nice to get a new toy to play with!


Well that was all for now, next update after Xmas, and maybe also new year.

Merry christmas,

Noah, Louise, Lilo and Thijs

Long overdue update

Hi everyone,

 

A long long overdue update! Let's start with some ancient history: Noah's Birthday.

 

He had a great time at school, and at home, allthough we didn't take any pictures of the party. I guess we were too busy having a good time.

 

 

 

For all of you who haven't visisted for a while: The garden has changed a lot, we put in a play area for Noah next to the house. He has a swing, which he loves and a slide. The slide is a bit too advanced for him, he loves going down it, but has to carried up. We'll have to wait until he can climb up himself for that to be a regular event. Anyway, here you can see my parent helping to level the ground for his play area. I'll take some pictures for the next blog entry so you can see the difference. We moved quite a few big shrubs and lot's of earth!

 

We also had the backgarden repaved in a different pattern, here the old situation is shown off by our favourite model. Does make me long back to wamer days, these pictures.

More summertime fun, now in school.Noah actually managed to get some color on him this year, instead of his usual scottish-like white-blue skin colour.

 

A while ago, we tried a new way of having a weekend of. Instead of having nurses in our house, and the two of us leaving, we decided to that noah could go for a sleepover at a nurse (they kindly offered). This would leave us in our house free to do some thigns we needed to do, and without actually having to leave to a hotel. A penny saved.. is a penny spend by Louise on other stuff ;-).

Anyway, we have now had two of these weekends, and these are pictures from teh second weekend. We forgot to put the camera in the bags for the first weekend, so we got some lovely prints from that weekend. You can check them at our house.

Anyway, I don't think I have to tell you Noah really enjoyed himself!

On to the rest of the family. We are doing allright-ish, with lot's of downs and ups.  Still trying to come to terms with the reality that Noah will very very likely need some form of care and protected living for the rest of his live, something that we really wanted to avoid for him. As long as he is progressing we can cope, and there is a lot of progress.

Work is good, despited major cutbacks i'm still there, so that is an up. Not much else to say, because I'll say it all in the next post. Coming soon: Sinterklaas and Wales visit, with a very surprising video!

Thijs

High tea & School Festivities

Hi everyone,

Noah's school celebrated it's own birthday a while ago, so there were lots of extra activities. The theme of all the festivities was ' Circus' so there were (circus) animals. Well okay, it was just a pony, but we didn't really like the idea of a tiger anyway.



There was also a lot of acrobatics.Here Noah is learning how to go up the stairs, but down the slide is still very scary. He can go up the stairs, if he wants to, but going down the stairs is still very difficult.

Hiding under a parachute is always a lot of fun.

And then there is the oversized trapeze

Also some handstands on the floor.

And lots of balloons, nothing says party more then lots of balloons!

Except for cake..... He seems to like the whipped cream. Not strictly for eating, but still........

And on the last day of the week of festivities, all the childeren went to a special circus, by the cliniclowns. It is a fantastic event that we can really recommend to every one (all children and adults as well!). Find more information here: Boemtata.

They have the same handstands and stair climbing acts as Noah demonstrated earlier. he loved to see everything, the most spectacualr things were too fast to capture on camera and too engaging to remember the camera.

Aftyer the show there was a lot of opportunity to meet the stars, but the experience was so overwhelming that a nap was needed.

He did not even need the specially created fluffly sky room.

One last picture from this week. Noah is starting to walk better and better, and he can now walk with just a tea towel for support. The problem is that he doesn't really like to, and is getting smarter and more assertive. So now when he sees the tea towel he sits on the floor and refuses to get up. The school has manged to trick him with a variety of other objects, so hopefully that will be enough until he gets confident that he can walk this way.

Last in this update, some pictures of the High Tea course that we hosted. We tested all the recipes and my teaching skills on some friends first. Recipes and bookings are still available :-). Here our charming assistant Maarten is showing the freshly made scotch eggs.  

And here is Tom trying to show how hungry he is. Luckily, because there was a lot!

A close up with meat pies, sandwiches, bubbly, more sandwiches, black forest gateau, scones en some pims in the background.

And here I am for real, explaining the finer details of pastry making to my mum and aunt Annet. All went smooth, but we were too busy to make a lot of pictures, so you'll just have to believe us that the table looked even better then the first time (practice makes perffect after all)

Everything turned out reallly well, and it was a lot of fun to do for everyone.

Enjoy and hope to see you on saturday at Noah's (and mine) Birthday Party!

Thijs