A new year a new update!

Gosh! It's been a while.  The last 15 months have been a really big roller-coaster for us. Loosing Lex, beloved opa, has just sent us all spinning.  I don't really want to write about that because it's all still quite raw.  
Noah got very ill afterwards, it really was too much for him.  It made us realise how much Noah is aware of what is going on around him.  Noah ended up in hospital for observation for 2 days as he'd been experiencing weird saturation dips.  The cause is still unknown but for safety Noah has to sleep on his breathing machine.  This winter Noah has been more and more reliant on his breathing machine and oxygen.  I believe that Noah is just burnt out.  He's been through so much in his little life that his body has just used up all available nutrients.  
I've been turning more and more to what is known as alternative therapies to help Noah.  I have seen some progress with Homeopathy which is encouraging.  Although my spoken Dutch is much better now, I'm still not very good on written Dutch, which has hampered my search for treatment for Noah.   Since Lex has passed, I've come in contact with people that have really helped me get Noah the care he needs.  Maybe you don't believe in this kind of fanciful thinking but I think Lex is busy organising things for his grandson, and he's good at it! 

One of the first organisations I came across was Stichting Horison.  They run courses for parents and volunteers to help children with autism, (the course is also valuable for all children that have contact/communication difficulties).  These courses are held over the whole of the Netherlands, but there are only a few per year.  This time the basic course was being held in Loosduinen, an easy tram ride from my home. I learned so much about autism and about myself, it was amazing.  I have a library of books at home about autism, I didn't think it possible that I would learn new things, I just thought I would listen to how others explained it.  How wrong I was.  I felt as if my eyes were finally opened and a light bulb went off in my brain! So insightful, so inspiring.  The second course a few months later in Amsterdam was just as brilliant.  Even thinking about the courses fires me with enthusiasm.  It has to be experienced to be believed.  The course gives you all the tools you need to start a play programme at home. Playing one to one with Noah and allowing him to lead the play.  Through play and positive experience Noah can chose what he wants to explore.  Noah has had a few play dates arranged with Stichting Groei  and he loves it.  We have been amazed at the results.
This last week Noah was playing on the floor and Wendy called me over.  She wondered if I had noticed that Noah can count?  She had been counting the cars that Noah had been playing with and he started moving his fingers to indicate the numbers.  As she's excitedly telling me this story Noah started frowning and giving his "dislike" face.  Wendy then turned to Noah and said "You don't like me talking about you like this do you?" and Noah shook his head No.  By this time my mouth started dropping open.  "Why don't you play with your orange toy?" asked Wendy.  Noah looked around him and then selected his orange toy to play with.  I burst into applause and gave Noah a huge hug.  He was very please and decided that he now needed to wrestle and be tickled by Wendy.  After all this excitement Noah capped off the day by choosing correctly a yellow car when asked.  
To be honest, Thijs and I were a little spaced out by this - we didn't know what to think.  Had I really just seen this, did it really happen?  Our son can count and knows colours.  The next day, not to let any grass grow under my feet, whilst playing tickle with Noah I asked him where his nose was.  Using my finger, (he doesn't have great fine motor skills yet), he pointed to his nose.  Then his tummy, then his foot and then his "big tooth"!   The last one had him giggling.   Our son is a genius!  We've never really taught him these things, he's been picking things up even with all that's going on with him.  He's managed to learn these things.  Giving him the space and being open to Noah's communication has allowed us to see a tiny view into Noah's world.  It is amazing and a huge privilege.

We're also starting a new communication system with Noah.  It's called Picture Exchange Communication System or PECS for short.  On Thursday we're having an introduction course together with all the nurses.  We'll be coached on how to help Noah use the system for a few weeks and then hopefully Noah will be in full swing.  I am so curious to see what Noah has to say to us.  This is so exciting.  Finally Noah has the opportunity to communicate.  I'll keep you updated as we progress.

We've also found a medical doctor that practices using natural remedies.  It's taken nearly 4 months to get this appointment but I'm glad we did it.  Our first appointment was mostly telling Noah's history but she made some astute comments, which was reassuring.  Noah's having some blood-work sent off to the lab, we should have the results by the end of this month.   We also got advice about changing Noah's diet.  I'm still in the research phase but it looks promising.  It's called the Specific Carbohydrate Diet and it's advised by doctors for patients that have gastrointestinal problems that don't respond to traditional medicines.  If it means helping Noah to finally have a normal poop, I'm all for it.  

We're starting 2015 emotionally wrung out but feeling a bit more positive.  It is fantastic to see progress.  Who knows what this year will bring, there are so many factors making life uncertain.  We are however putting our best foot forward and letting go of what holds us back and putting our faith in what holds us up.  

Wishing you all a healthy and loving 2015. xxx


    

A Family Update

So many things have changed for the better.  Noah is making improvements, some small but some have been amazing.  So I find it very difficult to say and to explain to you that it is not going that well for us. 

We are emotionally and physically exhausted.  Perhaps because finally Noah is doing so well, we are finally allowed to relax.  It is hitting quite hard all the things that have happened in the last 6 years.  Thijs and I have been so busy fighting fires and focusing on how we can organise things so that Noah is best taken care of, we've not taken very good care of ourselves.

With help from our psychiatrist we've been trying to create a space for us to be able to take a break.  We've tried everything, but it always came down to the fact that Noah needs so much care no one could care for him without an assigned nurse being provided.  We don't have the funding to provide extra care so we applied for 'Respite Care'.  Due to the interpretation of their guidelines we were assigned 1 day respite care and 22 hours nursing care was taken away per week back in April.

We asked for help and got trampled by bureaucracy.   Under the motto "people abuse the system"  Noah is denied 1 to 1 care at his Day care facility (which is the 22hours they revoked).  We have invited the bureaucrats to view our home, we have provided letters by doctors and therapists to support our case that Noah and we need this care but this does not help.  We asked for help and it's worse now than it was before!

On Wednesday this week Noah pulled out his canule and it was very traumatic for all of us involved.  It very nearly went wrong.  This proves to me that what we are doing is very serious and very necessary.  I am not an overprotective parent.  I am not exaggerating.  I am not a control freak.  I am not overly emotional. 

What I am is very traumatised, tired and burnt out by the sheer scope of the circus that surrounds us.  I am overwhelmed by the red tape.  I am frustrated with the politics of treating a family with a child that has multiple handicaps as a pariah of society.  I have approached every organisation I can think of to help us, but again Noah is too unique.  Helping Noah would be a drain on limited funding as it would only help Noah and not a stream of people such as the blind or the deaf or the diabetic!  It is all understandable, it's the crisis, belts must be tightened.  It's also the last straw.  It's just too much.

Thijs and I just had 2 weeks in Greece to try and relax.  It is not very relaxing leaving your vulnerable child with strangers, no matter how qualified, because we know from experience that nurses can make mistakes too.  We did enjoy being away from the stress of the environment though and we did enjoy spending time with the Drosten Seniors.  For myself, it was wonderful being in the mountains and getting to swim every day. 
For the second week Noah stayed with one of his nurses and then we could let go and really relax.  We got updates via facebook and I shared a few of the photos.  Noah was having a great time.  It also happened to be our wedding anniversary that second week.  We had a really romantic time in Athens.  I loved every minute of being with Thijs but I missed Noah so very much. 

One thing that really made an impression on me when we got, (in a nice way), forced to take some  time out was how many people care about us.  My world is very small, just the home, Thijs and Noah.  I forget about family and friends and even neighbours who are all here too.  We both want to say thank you for all the kindness you show us, it is very much appreciated. 


The holiday brought to the fore all my physical problems.  I REALLY haven't been taking good care of my self.  When we got back we had an awful lot to organise and arrange, it has been very hectic.  I've had a few scary moments with my blood pressure and so I have decided I need to take another break, this time to focus on my health. 

It isn't a very easy decision to leave my family to fend for themselves.  I feel lots of different things, but I can't afford to get seriously ill so I have to do something.  Thijs is staying in order to provide some continuation of normality for Noah but also because he has his own responsibilities. 

With this post I am asking for your help, for me, for Noah and for Thijs.  I don't know what you can do, I don't know how you can do ...... but if you can do anything, please just do! :) As of Friday, Thijs will be on his own with Noah for 2 weeks.  I'm sure he will be glad of some company and/or a helping hand. 

xxxx

Surgical Update

Hi everyone,

As some of you may know, Noah had to go to the hospital last Friday for the doctor to have a look at his airway. This scopy had to be done under a complete narcosis, which is always a bit worrying. Anyway, he is recovering really well from it, he was awake happy after the procedure.
Saturday a quiet day with an afternoon nap, but he seems back to normal today, so that is all good.

So what did the doctor see?
Well I only saw him shortly directly after Noah came out of surgery, we will have an appointment in 2 weeks when he has had time to review everything and discuss with his colleagues. But the short message was that Noah's airway is very very small in 2 areas. The first one is around his vocal cords (which they didn't see themselves, but where they are supposed to be). There is formation of scar tissue there and the two pieces of cartilage where the vocal cords attach seems to have fused together.
A lower area, just beneath where the previous operation was done is also narrowed. Here it seems like the cartilage ring that keeps his airway open is just very very small. Both of these problems together mean that Noah is still fully dependent on his canule for breathing, as he can not breathe  through his natural airway. So: another operation may be in order. Since the first operation did not give us the desired result, we are not too confident that a second try will give any better results.

Oh well, we'll see what they come up with this time, and current thinking is to try and get Noah a second opinion with one of the US doctors that have done airway reconstruction surgery recently. Hopefully the insurance will okay it, but it not going to be an easy option either.  However, as all of us know, we will do anything for those we love.

Thijs

Party!

Hi everyone.

To continue a long, long tradition, Noah and me (Thijs) will celebrate our birthday together. This year the big party will be on Saturday 20 July from 15.00. All out friends, family, neighbours and acquaintances are off course very welcome.

There will be cake and a BBQ, so please let us know in advance if you will drop by, then we can buy and cook the right amount of food and drink.

Hope to see you all on the 20th,

Thijs

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