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

Operation succeeded

Noah is resting now, but all seems allright. Old canule is back, so we're looking forward to the future.
More news soon. And I promise to post pictures again, been a bit slow recently.

Thijs

Hospital Update

Another visit to the hospital last friday.

Luvkily it went better this time, the doctor was very optimistic, and now pronounced that he hopes that the next operation is the last one. That would be great, allthough we are not sure if we should believe this good news or not. Bit of a roller coaster ride these hospital visits!
More medical news: the narrowing of the airway was most likely caused by an infection/abcess, located just below the trachea stoma. This swelling may have pressed everything a bit closed. Since that abcess has burst, the narrowing has disappeared (the docor told us to forget he ever said it).

All in all very good news, lots more happened, but that will wait till next week.

Thijs

Not so happy campers

Hi everyone,

It has been silent here for a while. This is not because nothing has happened that is worth telling you about, but because we couldn't find the energy to tell it all in a proper way. We feel that it is better to wait and write a proper post then a random rambling head nor tail post. Not very web 2.0, proper posting instead of a short tweet, but I guess I'm an old-fashioned kind of person.

So, a short overview of what's been happening recently.

Most important is that Noah had another change of his stent, which was on the 28th of September. After all the good news the last time we were almost looking forward to it, although not completely. It is the hospital after all....

Louise went alone, and I joined her in the early afternoon. Noah was already on his way to surgery with Louise when I came in. It seemed to take a while, but that was because Louise had to change his stomach sonde/feeding tube, which the operating room nurses usually do for us. This is a fairly difficult change, which neither of us has had any practice in. Louise had to explain the usual procedure to the anesthesist team for putting Noah under. None of this inspired much confidence.

When Louise went to pick Noah up after the surgery, the doctor was very abrupt and rude. He did not want to say anything about how Noah's throat looked or how long it would take to heal completely. Louise was left alone with Noah, who was still knocked out with the anesthesia and on a strange hospital breathing machine, a completely unknown machine to us. They failed to give Noah a paracetamol, so he came out of his narcosis in a lot of pain, trying to claw the canule out his neck coughing up blood and no nurse around to assist Louise. All in all a very normal day in the Sofia hospital, unfortunately. I am sure you can understand why we work as hard as we do to avoid Noah going back there for more than a few hours.

The doctor came to see us later that afternoon while Noah was recovering, and explained a bit more about what he had seen during the stent change. Not only was the healing process no as far along as he (and we) thought, there was also an additional complication. Where the canule is going into Noah's airway some scarring has taking place, narrowing his airway. So although a decent size airway has been created with this operation (if it ever heals), it may not be of much use with a narrower bit just below it. This complication can be treated luckily, but that means more operations and more delays. The doctor was very grumpy just after the operation, which was why he behaved so abruptly. He is very involved, so this felt like a setback to him as well. So no new expectation of when everything is healed, I personally don't expect it this year anymore, but I could just be a bit too disheartened.

More news from the operation room was that Noah has got perfectly normal teeth according to the dentist that had a quick look. A two year old boy having every single teeth and molar he can have is not normal, but hey what do we know...... So we are back to the formal procedure of getting a normal dentist to have look (which they can't as Noah will not open his mouth long enough), to having a normal hospital having a look under narcosis (which they can't, because they don't have the specialist nurses to take of Noah), to going to the Sofia (yeah, that's going to work).

We didn't really feel like talking to anyone for a week after that experience.

Not that that is an option, but still, you feel like that sometimes. 

After having the horrible hospital experience we quickly noticed that the stoma (opening in his throat) was starting to weep, and getting sore. This got worse a few days after the stent change, with bits of blood and a bad smell coming from somewhere further inside the stoma. It looks like the piece of string that holds the stent in place is sawing into his neck again, nut maybe something else is going on inside, we can't tell. After offloading most of the nursing duties on Louise during the stent change, the hospital now was reluctant to listen to us, and treated us like over concerned parents. Incredibly frustrating and demeaning for us, as Noah keeps amazing every one, and has never had to go back to hospital for any illness, because we have always done all the care ourselves. We do know what we are doing by now! They finally prescribed some extra antibiotics last Sunday, so hopefully that will help. 

To add to the frustration, Noah's earring got lost, which is used as an extra safety anchor for his stent. I’ll try to draw a picture for you sometime so it all makes some more sense, but basically the stent is anchored at top by a piece of string so it doesn't sink into his lungs. This piece of string goes up through his airway, through his nose and is held into place by a plaster on his cheek. So now, on top of having to clean the stoma, which is very painful for the little man, Louise had to reinsert his earring, the hole for which closes up very rapidly. Noah panicked so much we couldn't put him in bed anymore without a big panic attack; it must have hurt so much.

The next item on the list is off course Noah's development. This is going forward, but it is a big responsibility for us. As he cannot go to day care because we cannot risk him getting ill, we need to provide all the necessary stimuli for his development. We get help from the revalidation center, which is very good. We also get some specialized tools, like his walker and the big buttons from one of the previous movies. Everything does seem to take forever to arrive though, there is at least a three month red tape period for anything. We have now ordered and paid for from our own pocket 5 new speaking buttons, but the bigger things are just too expensive to afford. 

Noah's new walker (the previous one was on loan from the revalidation center) arrived last week, but we found out it was broken on arrival. Not sure what is going to happen, but as one of the wheels is stuck in one direction it is not that useful for walking around. Noah's buggy needs new suspension, as he is getting too heavy for his current suspension. We have asked for this almost two months ago, the springs have finally arrived, but nobody knows how to install them...

It just seems to be that we are cursed by some old Chinese witch.... May you live in interesting times.....

Ha! We surely do. On a more personal note, we had to let Noah's personal carer go, as our budget for this year is getting very tight. Yet another thing that is not a nice experience; firing people. The night shifts are too important to be able to keep functioning, so this was our solution. A difficult decision to make nonetheless. 

My work has ordered me to (re)write my CV in a specific style, for which no guidance was given. Oh, and by the way if it is not finished and approved we will give you a bad grade for your yearly review. Thanks, guys, I really needed that as I got 2 out of last 3 projects by myself, without a CV. Needed a CV the last time 3 years ago. After that they cancelled the course I need to do my current job, as there is no money. After I arranged extra care for that week, as this course was in the UK, so Louise would have to cope alone for a week. Thanks for shafting us with the bill for extra nursing care. The meeting to discuss all of this has been postponed to what would have been the start day of the course, for a nice symbolism.

Oh, and there will a course for everyone in your department to make them aware of companywide standards, in a conference center , as the head office is not big enough. Wondering where that money came from..... Luckily I like my current project and my colleges there, but I do wonder what I do it all for.

Now don't stress out completely, we are still standing (cue Elton John) and going strong. It just a very rocky road sometimes. 

Pictures and movies the next time!

Thijs

Dutch boy

I couldn't resist posting this, Noah was at the creche on Friday and for fun his physio put him on a bike .... well he is Dutch after all!

Good News!

It's been a very lovely weekend after a very stressful week. Noah's stent change operations was going to be delayed by 2 weeks, so I had to do a lot of calling and pleading to ensure it went ahead as planned this week. We were fortunate enough to be told we could go on Wednesday, but the operating theatre was busy and so we couldn't get slotted in, so we were asked to come back on Thursday. By Thursday evening at 18:00 I was loosing hope, but by 18:45 Noah went down to surgery.
Noah had been keeping himself entertained with DVD's and his books. I love this photo because it shows how much his fingers are improving, he's turning his own pages here.


Dr Hoeve practically bounced into ICK1 to give us the good news that Noah's throat is healing which means that he will probably only need 2 more stent changes. WOW!!!!
Our ICK1 nurse said "congratulations, what next?" errrrmmmm.... we looked at each other in confusion ... we're so far into Noah's future, we don't have any plans for "what next". I think I will be busy next week talking Noah's team and begin planning for what comes next!
This is so huge, we still can't get our heads around it. Another 6 weeks, then it will potentially be another phase in our lives. I think Thijs summed it up best when he said, "I can't wait to see what Noah does next ..", our amazing boy just keeps surprising us.

We wanted to do something nice this weekend as a family and so we took the bikes out and enjoyed a trip around the area. It was a lovely day Noah was very tired by the time we got home, but I'm glad we got some fresh air.
I still get blown away by the pretty scenery where we live. I love living here :)

Some of Noah's therapists stopped by last week to see Noah at home but also to see if they could help improve his environment. One of the greatest things they brought was a walker chair, Noah is able to sit and still be able to move. This allows him great freedom without costing him too much energy. He loves it.
Our new target is to get Noah to communicate with us, for him to understand that he can have an impact on his environment and effect what goes on around him. A baby learns that when baby cries - someone comes, baby cries - activity is changed, baby cries - food or bum change, it doesn't take long for baby to realise crying is a way to impact it's environment. You can see how Noah didn't learn this and if you couple this with his physical problems where he couldn't move around either, it's a challenge to open up his mind and realise all the possibilities. Of course Noah's team are up for the challenge! Here is a great video of Noah moving around and enjoying cause and effect ... "I press a button and something happens!"

Noah only learned to press a button for himself this morning .... but he enjoyed pressing the buttons for 90 mins straight - It's lucky we love him!!! We're very proud of him :)

Noah is teething a lot still. There are plans in progress to try and get him to see a specialist dentist because he has all his teeth, but they keep on coming! Having a feeding tube in his nose for so long plus teething so quickly and now add the stent in his throat, trying anything with Noah's mouth is just a "no! no!".
He doesn't put anything apart from his 'doekie' or his hand in his mouth, so it's been impossible to get him to try and eat or accept something like a teething ring.
I got told off about his lack of mouth hygine so Noah has had to learn to accept cleaning his teeth twice a day. It was hard work, but he even manages to laugh now so huge progress. So imagine my surprise when he accepted some food earlier this week! Of course most of it went over his clothes, the floor and me ... but he was still smiling so I call that progress!!
One of the coolest things happened today. Noah is always a very happy child, he smiles a lot and is hardly ever grumpy. I've only really seen him get excited but never laugh, until today. Noah is usually a bit curious about Lilo, but mostly Lilo and Noah tend to ignore each other. That all changed today when she was playing with her squeeky chicken toy ....



.... he laughed so hard, how our hearts didn't burst with joy I'll never know.

xx The Drostens

3rd Stent change

Just a quick note to let you all know that this surgery went better than the last one. Noah awoke drowsy but happy. We had a delay of 3 hours getting into surger, but once Noah woke up we were out of the hospital within 30 mins!

The last stent change hurt Noah and there was some infection. However that was all cleaned up and already looks better. Our doctor said that Noah's airway looked good, and everything is going as expected. There's still no news on vocal chords, it's too early to tell. We're still going to keep our fingers, toes and eyes crossed for a very special Christmas present for Noah and us this year. Hope is very much alive.

Busy, Busy!

July is a weird time for us. I'll probably write more when I've gotten some distance and perspective from all that's going on. For now I thought I'd share what we've done with some by posting some photo's - after all "a picture is worth a thousand words!"

The house is completely renovated, but it still needs those homely touches.
Thijs is busy fixing up pictures, lights and here he is installing a door bell.



Oma and Opa are helping us tidy up the outside of the house by getting rid of all the green waste.

Lilo has been keeping busy, making sure any tennis balls or squeaky balls are firmly annihilated!

I stayed in the kitchen making a few meals for the freezer. However I was so proud on my Greek inspired pie ... courgettes, mince and topped with feta enriched mashed potato, yummy!
I named it Troodos pie, after the mountain in Greek Cyprus, because it was such a huge pie. The sparkles in the ovens back splash make it look like a night sky ;)


You saw in the last post that Noah had sat on a chair, yeah well check out how confident he is now!

If you listen carefully you can hear Noah laughing - well his version of a laugh. :)

Now that the house is getting all lovely and home-y, we're turning our attention to the garden. We of course don't have any money to do anything yet, but it's fun to think of ideas and dream of what we'd like to do when we win the lottery! :)

Here's Thijs doing some research - although he's not that happy that I keep sneaking up on him taking photos!




Noah is often in his walker, he loves kicking a football. However Lilo has other plans ...

"Play with the tennis ball!"

"No! The tennis ball!"

"This kid is really hard to train!"


Noah hasn't been going to his creche group since we left our old home. Because his surgery is so important we didn't want to risk infection by Noah being in contact with too many children. However, we noticed that Noah really missed the interaction. So after some discussion with his team at the group, Noah now goes once a week for private sessions with some of the members of the team. He was really glad to go, and they were so glad to see him. Everyone commented on how big he's growing and how well he is doing developmentally. We're really proud of him.
Here he is doing some of his exercises ....

Noah can't come into the crawl position yet because his tummy muscles won't support him, but he can hold the position for a short while when assisted. This will help him develop his muscles.
Furniture surfing! I hadn't put much thought into how much balance comes into moving your feet together and apart. You have to put all your weight onto one foot, balance and move the "light" foot, then move your weight onto that foot, balance and bring your feet together! Phew ... this is also something Noah is practicing.

Noah is pretty active now, I'm not quite used to it. He can roll around onto his tummy and back again. He had done this once or twice in the past - but now he's like a little alligator thrashing around and around, especially in bed. Which is why he looked like this last week ....
.... mummy has to get used to closing the safety gates. Feeling very guilty right now!

This week he has a new look! My dad posted out some new clothes ... I'm not sure that Lilo is convinced whether Noah is a fashion victim ....
.... or a fashion guru. I have it on good authority that neon stripes are really in, but the jury is out!

We wanted to take a look around our new area, so we decided to go to the Saturday market and check out the shopping street. It was a miserable wet day, but the little town center was charming, lots of restaurants and independent shops. Great for window shopping and stopping for a lovely coffee and cake ... but maybe on a sunnier day!

Noah was in for his 2nd stent change last week. I got some lovely pictures of Noah on his bed watching "In the night garden" before he went down to surgery. His favourite thing to do now is chew on his foot .... he's just showing off how flexible he is really. I put together a little slide show, I hope you enjoy it :)



The Drostens xxx

Even more photos!

I realise we've been a bit quiet on the blogging front. You can appreciate it's hectic and stressful at the moment with the frequent trips to the hospital. However, that's not to say we're not taking time out to enjoy ourselves as a family when the opportunity presents itself.
We enjoyed a lovely bike ride this Saturday, a chance to enjoy the sunshine and get to know our new neighbourhood. As you can see, Noah was like a prince in his carriage. He really enjoyed himself.


Thijs did all the hard work, the box-bike is quite heavy once you add a few bottles of oxygen, a suction machine, Noah, and the dog!

Even though this is a tough time for Noah, he's still managing to surprise us. His development keeps on developing! Just for fun, Noah's nurse Heleen, put him on his seat (previously too big and too advanced for him) .... well, this was a surprise!

What a big boy :) He was able to balance himself and as you can see, his feet touch the floor!! Heleen is not one to let the grass grow under Noah's feet so she tried him on a stool (no back, and so therefore harder work for his tummy muscles to keep him stable).

Ta-da!

It's not only Noah's daddy that's incredible (see t-shirt), but our Noah is incredible. I keep wanting to call him my little boy, but he's not little anymore! :)

We're off to the hospital again this Friday for another stent change. His usual doctor is on holiday, but the surgeons performing the change were in attendance previously so it should be fine. We're very lucky in that the hospital let us come home after the procedure, it's a long day but at least Noah gets to sleep in his own bed at night.

We'll write as soon as we're able to string a few coherent sentences together, but for now we hope you enjoy the photos. :)
xx

A few photos

Noah after his first operation, in bed laughing at his favourite "In the night garden" DVD, surrounded by Maka Pakka!





Noah decided not to sleep before going to the hospital for his stent change, here's his happy face at 09:00am!!




As it was Noah's birthday, he asked that we take some treats in for all the doctors and nurses that care for him. They were very happy to join in with the celebration. Thanks Zuzanne for taking the time to make these yummy treats :)


Noah in his Birthday suit!