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

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