News and Pictures

Hi everyone,

A current update, about what is going on right now. Fresh news for a change :-).

School:
Noah will go to school in about a week and a half. Despite some administrative hic-ups the daycare centre at the 'tyltyl' school has finaly decided on when Noah is welcome and also informed us of the dates with plenty of time for us to make arrangements for nurses etc. etc. ... Right, I'll try to turn the sarcasm a bit down, and continue with the rest of this post.
We have started arraging for a nurse to go with Noah each day as we have not heared anything from the school about them providing nursing care, or training the school nurse. This will cut into our night shifts of course, but that is a small price to pay when we know that there is someone with Noah that can be trusted with his care. For now Noah will only go to school two days a week, we are still busy trying to arrange nurses for all the days.  Since one of his school days coincides with his creche day, the creche is working on moving Noah to a different day which involves training up staff for them as well. Changes are never easy! ;)

Development:
Noah keeps developing his big motoric skills, he is starting to stand up, we turned around one day to find Noah standing looking out the window! :




And walk while holding our hands, or a handrail:



Crawling goes better as well.



All  this new found movement is not without danger though.....

 
Noah managed to crawl off our bed and bump into the heating. Luckily it wasn't as bad as it looks, but still was quite a shock for mummy - must be his 'opa's' influence, we think. Fingers are still all there though! ;)

 He seems to be making more contact and is getting better at realizing that he can do things he wants to do.This does lead to more (fake) crying if he doesn't get what he wants as well, which can be quite funny. He can pull the most pityfull faces, but without a tear in sight.





Visitors:
Louises father will come to visit, so we are looking forward to that. I'll take some holiday while he is over here, so hopefully we can do some gardening together and get all the paths and some building work finished. It will all depend on the weather, and since it is a hoilday we'll take it easy anyway! Anyone volunteering to come over while he is here, please call, and you can entertain grandpa J.B. for an evening!
Before that Tom and Judith will come over for a night out. We are planning to go out for dinner, looking forward to that as well!

And the rest of us:
We are doing all right, we did a few nice things this last months. We went over to Eindhoven to cook for my aunt Annet, she asked me to show her some tricks. Was a very nice day out, and we saw Noah's cousin Max again as well.



We were also asked to bake some cakes for dessert for the neighbourhood BBQ. We completely forgot that we promised to do so last year, so it came as a bit of a surprise when two days in advance we were asked to bake cakes for the 55 people that were going to be there.  So oven(s) on, and a quick check what different size cakes we could make:







With having to take Noah to school for three days a week and the bad timing of the handicapped taxi system, we have been looking for a car for Louise. It arrived a few weeks ago and here is Louise enjoying her new car!



 Hopefully she will soon be able to enjoy her three days of relative rest a week. We are both very tired though, and a bit stressed. The stress is mostly because of the difficulty of getting Noah started at his new school, which was a lot of work for us. We haven't been able to do much around the house, but we did manage to bake two xmas cakes, so Louise is already getting excited about putting the ligths up (including outside lights...). The garden is only just recovering from the summer lights that we can put outside for some added 'sfeer'...



And the last picture for today is from a surprise vistor. He (or she?) has not been able to rid the garden of slugs and snails, but I know there is plenty to eat for the little hedgehog anyway.



See you here again soon,

Thijs

An evening at the zoo

Hi everyone,

As promised, here are the pictures from the zoo. First let me tell you a bit about this night, it is a night where sick and handicapped children are the special guests at the zoo. Tickets are by invitation only, and we were lucky to be given one by the hospital. The kids are allowed to help feed the animals as much as possible and get treats for themselves as well (free ice cream in this zoo). There are only a few visitors/tickets allowed to make sure all the strollers and wheelchairs have enough room to manouvre. A real special occassion, starting of in dutch tradition with rain!

So first stop: the inside oceanium, to watch the sharks and rays swimming overhead.

And look what wanders past here, a jumbo shrimp! Lucky for him we don't live in australia, he'd gone on the BBQ straight away.

Still inside to the tropical birds, these two are fighting over who gets the tasty treats that were handed out (depending on your species, most of it didn't look that good to me).

And here is the best picture we were able to get from a roadrunner. They are very fast!

Luckily the weather cleared up, and we wandered around outside, picked up some elephants poo (supposedly great for roses), and visited the monkey island.

Even the hyena's got an extra meal, probably to make sure they wouldn't try to eat one of the visiting kids. The hyena puppy looked a bit like lilo, but with a nasty temper!

The last set of pictures are from a Siberian sea eagle, where we were almost the only visitor at feeding time. Very impressive animals, and a unique opportunity to see them from this close. 

Do check out the video, just to get a better idea of the size of these birds.

For more information about the dream night at the zoo, you can check: www.dreamnightatthezoo.nl/ 
This organization works globally so there may be an event near you as well!

Enjoy,

Thijs & Louise

Pictures!

Hi Everyone,

As you may remember, the last picture post showed you how wonderfull Trier was. Nothing like a bit of inspiration for home cooking, so I created a summer vegetable risotto & some lamb chops to go with the wine we brought home with us.

For dessert some strawberries:



But back to work! As you may remember we had some nice weather a long time ago....... We took advantage of it to do some gardening work. I planted some flowers on one side, and a few courgettes on the other side.

The courgettes are doing great, we are still eating courgettes now!


A few weeks after we finished the neighbours proposed to put in a new fence, so the flower bed suffered a bit. You can see me working very hard to put it up here (I had a very bad cold with anti-biotics and everything)

Right, quickly moving on in time, we had some nice days in june/july when Noah enjoyed his bath.

 There is more water out of the bath then in it, with mister Splash in full swing.



A few weeks later again: Noah's birthday. Tom, Judith, Ties and Gijs came to visit and we enjoyed a nice meal in the garden:




Diner was courgette pasta (of course, courgette in everything these days)

We don't have any pictures from Noah's birthday party, but we did get this fabulous cake from Hanneke, one of our Nurses. Thank you again!




Last but not least, a random pictures. Just to show how much laundry one little kid can produce. Luckily mu mother helps us out with folding and ironing.

And lastly Noah in his old walker. He has a new one now, but we still liked this video:



Hope you enjoyed it, we have.
Things to look forward to: We went to a special night at the Rotterdam Zoo for Special Kids with acces all area's. We even got a nice pile of elephant dung (be glad that elephants don't fly) to take home!
So more updates coming to your computer/tablet/iphone screen soon,

Thijs

News - Lots of it

Hi everyone,

I promised to let you know how we have been doing, so here it is.

First of all, a lot happened that had a big impact on our future and our thinking. We had quite a few meetings with doctors and specialist to see what we can expect and the news is not entirely what we hoped for.

First of all we had a meeting with a 'Neuroloog' (Nerve specialist). He concluded that Noah has normal reflexes, so his nerves are there, but his movements are a bit primitive. This means his control is not as good as it should be, and something could be wrong with his nerves. Very many possibly / maybe / wait and see sort of stuff around this, but not everything is normal, that much is sure.

This was later confirmed by the developmental specialist, who also commented on the fact that although Noah is developing (and quite well at that), he is not catching up to his real age. In all reality he may even be getting further behind. This was also not what we hoped for, and does mean our future could be very different form what we dreamed of when Noah was born.

The revalidation doctor has very recently spoken to us, and because Noah is going forward they think he is ready for more intensive therapy, they are aiming at 3 days a week. A big step up from his current two mornings. It was very strange and a bit upsetting to visit his new school, where he will be going in the near future. It is the best place for him, and most parents will be envious of the level of attention that the kids get there. The reason that they need that much attention is another thing.... For the dutch people who are familiar with these kind of schools, he will be going to a pre-school day centre, attached to a TylTyl school.
We're still both happy and sad about it all.
A bit of good news is that the school has a school nurse, and will train their staff to take care of Noah's medical needs as well

A last bit of news came from the ENT (KNO) doctor, who was concerned about Noah's apparent inability to breathe with his speaking valve. He finds this very difficult and tiring, which is a bit strange. The doctor wanted to do another surgery to see if the reconstruction surgery is successful. We have postponed this surgery till autumn, because Noah is now developing very well, and we don't want to interrupt that.
Lately Noah is into chewing stuff and his breathing valve is one of his favourite objects to chew on, so we haven't tried it on him. So we'll have to wait for the surgery, but a very real possibility is that the reconstruction surgery was not completely successful, which means Noah will have to keep his canule for the rest of his life. Again many unknowns, but this could have a very big impact on our future.

So, not only news about his future, but also stuff that we are doing in the mean time.
For Noah, he now eats (most of his food) and is starting on somewhat more solid stuff. Drinking is still a problem, but a few sips is a lot more then before. He really seems to enjoy it, although he enjoys our home cooked food better then the little pots from the supermarket. A good sign!

His walking is also getting better, and he recently started crawling. So far only on soft surfaces (couch and bed), but it is very good to see. He has a more challenging walker at home now, and he actually seems to enjoy that on even more then his older, easier one. He walks up to his new one and grabs it if we put him in his old one. He still needs some more practice in turning around, but straight on goes really well.
Sitting up and turning over while lying are going really well, so he is really getting on with his large motor skills.

Also, Noah is now going to a day care centre on Monday. It is a specialized centre, with a nurse, so Louise has a day where she doesn't have to look after Noah. It took a lot of organizing to get it all set up, and get the staff trained, but it is going really well now. One of the carers also works at the revalidation centre, so she already knew Noah and is a firm favourite. They also made some school photos which I shall try and scan in to post here. This whole experience at the creche probably triggered the moving to three days of therapy as well.

Louise has been following an intensive baby signing language course this last month, and she has been really busy trying to get Noah to sign (more). Although with his fine motor skills developing lagging behind it is difficult to say what he can do but this week Noah signed "mamma" by touching her cheek instead of his own. So he's signing in his own way but for us it's a promising start!
Aside from doing all of this with Noah, she qualified last Saturday as a teacher! It is still the first baby steps in the signing world (literally), she is now qualified to teach baby-signing. So if anyone is interested in this, please contact her ;-) . In all honesty it is very cool to see babies that can't talk yet sign, and tell their parents what they want that way.

All this success, becoming a teacher has gone a bit to her head, so Louise has demanded her own car. No, just kidding, but she does need one to take Noah to school, as the communal taxi system will be way too time consuming. Also they will take Noah there (with Louise as nurse for the trip), but then Louise will have to struggle to get back home, and back to school for the return trip. She is not the handicapped one after all....
So, we have been looking for a little car that is big enough to put all Noah's stuff in, and small enough to park easily for Louise. The current option is a Kia Picanto, which seems to have the biggest and most accessible boot of all the small cars we've seen. Also promises to be reliable, with a 7 year warranty.

Me, I'm not doing much different from before. Work is going all right, with some (due to company and economic reasons dim) perspective of a promotion. I'm not holding my breath waiting for it, but at least it is going in the right direction, however fast or slow. For my self, I'm trying to come up with garden designs and time to do something with them. With buying a car there is no money left to hire anyone to do garden work for us. Luckily my parents come over every week, my dad to help in the garden (do most of the work it seems), and my mam to look after Noah, so I can also do some work.

So all in all, we are looking to a future still filled with unknowns, and probably lots and long term care for Noah. But Noah is going forward, and we will keep pushing him and the system to get as far as possible. The sky is the limit! Now on to more pictures!

Thijs

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