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