Time for an Evaluation!

For those of you who don't live in the Netherlands, it's customary every quater to evaluate your work relationship. It's a semi-formal meeting where employer and employee discuss what is going well and what could be done differently.
When I first moved here I found these evaluation meetings so akward and difficult, but over the years I've gotten used to them and I even find they are a good tool as long as you're open and honest, after all with this type of conversation you may hear the bad as well as the good things about yourself!
With an evaluation you have the opportunity to sort things out before they become a problem, take a moment to see if you're going in the right direction and take stock of what you've done so far. This week it was time for an evaluation with Kinderthuiszorg, the nursing agency. We made the appointment a few weeks ago and I have been thinking about things ever since. I've looked through the old blog entries, wow! what a journey.

The thing is, it's easy to get bogged down with stuff, especially when you get so tired. Recently I've remembered something that was said repeatedly (and to my great annoyance!!) to me as a child, "count your blessings" and annoyingly enough, Granny was right - you do feel better when you realise how many good things are in your life.
Yes it has been a struggle, yes it is hard work, but it is REALLY worth it; Noah is such a joy. We've got fantastic people supporting us. We've been so lucky with the people that come to the house to help Noah with his development and care. Everyone loves him and enjoys being with him. As a parent, we're obviously biased and think "of course they love him, how could they not", but apparently not all kids are so sunny natured and relaxed - who knew??!!

We've been really busy these last few weeks with hospital visits and getting organised for our holiday.
Noah's routine check up, heart echo, and surgeon appointment (regarding undecended testicles) all went well. His heart is strong and the defects are very minor now so they don't need to see us for another year and his medicines have been reduced. They are going to wait and see regarding his testicles as one is easy to decend and the other more complicated, so at the moment it's not a great problem so it's better to wait and maybe combine his treatment with another surgery so that it's all less traumatic for Noah. The routine check up was quite frustrating in that it takes up a lot of time, Noah is quite stressed from all the noise and comotion of the hospital and ultimately it's just a way to keep in touch rather than a useful visit. We have a revalidation doctor who is very helpful and useful though, so life keeps it's balance. Noah, despite his stomach flu, now weighs a decent 11.6 kg and is now 79cm in length. He's got 8 teeth and is working on his four molars, yes - all at the same time! Sigh!! No rest for the wicked!! :)
Noah has been doing great work getting off his machine. He's now breathing for himself on average 7 hours a day. When he's on his machine he no longer needs any oxygen. Huge step forward. We're trying to see how he does without his corset on, it's been so warm, and Noah cannot easily get rid of his heat (one of the genetic complications is that he has less sweat glands than normal). So far he's doing really well, we're keeping our fingers crossed on this one.
Noah is improving at a startling rate and we're so pleased with this. We're closely monitoring how much energy this is costing him as we don't want to tire him out too much, he still has a lot of muscle repairs and lung development to do - and that all takes a lot of his energy. We can't help but feel hopeful though and this all helps lighten some of the load on our shoulders.

My new thing I have learned is that it was much easier to plan network repairs and outages than it is to take one small child on holiday!! Still, we are really looking forward to it. It's now 01:30am on Friday morning, and we're finally packed - at least as far as we're able to, (he's still using some of the equipment), but we hope to be on the road by 10am this morning. Hahahahhaha! I some how doubt this but we have high hopes.

So it's a short-ish post today and sorry no pictures, but we're looking forward to seeing many of you at Chris and Lex's anniversary on Sunday. Once we're settled and back from holiday we will have lots and lots of new photos to share.

Take care everyone, hope you're all enjoying this lovely heat wave and not having to work too hard.

xx The Drostens

p.s. In the previous post Noah is playing with dried peas and NOT kitty litter!! ;)

Living the good life!

So here we are, living the good life at long last.  We're in the luxurious position of being able to ask for nursing help whenever we want.  The trouble with luxury is the amount of decisions you have to make.  I mean, do we want one full night sleep this week or two; shall we have someone for two short work days on the weekend or enjoy one long day?  Choices, choices - what to do!  It seems like I've spent a week looking at my agenda and calculating rates.  Well at least we are finally all arranged and sorted for July.  

Being a parent makes me wish I had managed to get promoted when I was serving in the RAF.  I just can't believe how organised you have to be, and I don't seem to be able to master it at all.  So maybe, if I would have made it to the lofty rank of Group Commander, I just might have had enough practise to have mastered the military precision it takes to get one child ready for a trip outside.  

I remember quite a few years ago watching in awe as my friend Jaquie got herself ready for work and her two kids ready for school - it was amazing! They were out of bed, washed, dressed, fed, lunches packed, individual changing bags packed (extra clothes, pampers, etc.), Jacquie was all neat and presentable and everyone was off and into the car within an hour!!!!  If I hadn't seen it with my own two eyes, I would be calling myself a liar.  

Other mums keep reassuring me that practice makes perfect, hmmmm, I will have to trust them on this, but so far ... well, let's just say I need more practice! 

I'm feeling really impatient as I can't wait for the delivery of Noah's new furniture.  As mentioned previously, we've got on order his bath, a buggy, a car seat that can turn, making it easier to load Noah and all his equipment into the car, plus a box and a bed. All of these things will make a dramatic improvement to our situation and so I wish they would hurry up and deliver them yesterday!  :)

You've all seen how much Noah loves his bath from the previous post, but this last week he's had stomach flu so it would have been so nice to be able to wash him properly. Plus it's nice for him to be able to float and we all know warm water around a sore tummy is very soothing.

All this beautiful weather, I just want to be able to put him in a buggy and go outside, instead of all the construction work we have to do with the current car seat / pram set up that we have, Noah is almost growing out of the thing and he only just fits , so he's not that happy with being squished into it.  My back will be very happy when we get delivery of the higher and roomier box plus it will be great to see Noah be able to roll about freely in it. Hopefully we'll hear something back from the council next week about when it all gets delivered.

Something I'm really dreaming about is finally being able to snuggle next to Noah on his bed in our pyjamas and read him a bed time story.    How cool will that be - VERY COOL!   

Talking about cool, have you checked out the GretaBonteKoe website?!  Only 19 sleeps till we're on holiday! :)  I've been busy shopping for holiday clothes (of course!!) and found the cutest sun protection factor 40+ swim suit for Noah with a matching hat - he's going to look so cute, very pale but very cute! The Hema has also been raided for some cool dude rompers and shorts and grampy Bazzard has also been put on the alert and is busy shopping back in Wales. So I wouldn't be surprised if Noah needs a bigger suitcase than Thijs and I put together, but that's the price of being a dedicated follower of fashion! 

Keeping Noah cool in this weather is quite tough.  He doesn't have enough sweat glands to keep himself cool, he has to wear his corset which makes him very warm, and of course he won't drink anything just yet, so the shopping wasn't all about fun.  Thijs and Arie, (one of Noah's nurses) were busy putting up a ventilator fan/light above Noah's box today and that helped a lot with keeping the area around him cool.  I had a good idea of trying and find one of those battery operated mini fans so that we can take that with us when we go out with him in his buggy.  It's either that or the PGB has to pay for a "punt wallah" to follow him around! (You may remember the punt wallah that the Seargent Major is always screaming at for falling asleep at the end of every episode of "It ain't half hot mum!")

While we're on holiday it will be Noah's birthday, and as mentioned we're going to Burgers Zoo in Arnhem.   If people want to meet us on that day please leave a comment/message or call us and we'll arrange something.

Noah continues to do great with his development.  Even though he's been sick this week, he's still a big lad.  He has officially been recorded, (from our visit to the hospital), as 78cm and 11.2Kg. We've noticed this weekend that 4 new teeth are starting to erupt in his mouth.  On the top it's the two canines (hoektanden) and on the bottom 2 molars (kiezen).  He has 8 teeth broken through so far.  It looks like Noah wants to get this teething thing over and done with as quickly as possible.

Noah is getting quicker and more adept at grabbing things, you have to be VERY quick with suctioning him now, otherwise you have entered the Noah's championship tube wrestling arena!  This boy has a really strong grip and does not want to let go - I'm sure Lilo has been giving him tips!  There is no way Noah will lie down anymore, he wants to sit up and oversee his domain even when his head is drooping with sleepiness. Noah is finally back to being the happy baby he was when he first came home.  It's really wonderful.

The biggest and best improvement by far is that Noah has been managing a steady 7 hours a day off his machine (with breaks in between) plus we've been lowering his oxygen and he's been managing on 0.2l/min as opposed to his 4l/min that he was on prior to his canule being replaced from 3.5mm with the larger 4mm.  He's far more alert and playful plus really curious about the world around him.  

Thijs has yet again spoiled me with a lovely dinner tonight.  We are trying to be a bit more healthy and so we had grilled Haloumi cheese with spiced vegetable cous-cous.  Yummy! Since I have an ENORMOUS sweet tooth, Thijs made a really tasty desert out of fresh Apricots, marzipan and puff pastry.  (Some of you may know what a huge chocolate monster I am, so the fact that this desert is made from fruits makes it healthy in my book!).  I surprised myself and totally enjoyed it!  Thijs bought a new dessert wine to try out, Monbazillac, and it really complemented the dish. We're thinking of adding a recipe of the week blog entry for your amusement. Let us know what you think of that idea.

  

Without further ado, I shall now shut up and leave you with a video of our Ginger Nut / Gember wortel for you to enjoy.  

Bye for now,

Louise

 

Zen (with LOTS of photos to prove it!)

It is apparently a very Zen like state of being if you live in the now, not thinking about tomorrow or yesterday but instead just live in the moment.  I'm not sure that many people would describe parenthood as a state of Zen, but is does have similarities! For example, time has no meaning, it is purely elastic.  Some moments last forever and yet weeks seem to fly by.  Since Noah is out of hospital, time has certainly flown past.  So many new things have happened:

Noah's friend Kalmin turned 1 year old on May the 18th.  Happy birthday Kalmin.  Huge congratulations are in order for graduating to breathing free, without your ventilator. Way to go! (Kalmin was also born with CHAOS so it's great knowing another strong young man who is beating all the odds).  You can follow Kalmins story via Kalmins CarePage. (Note! You have to be a member of the site, which is free, to view his page).  

I called our friends Bas and Marloes to find out how their pregnancy was progressing, and find out the baby is a week overdue!   After wishing them well, Floris entered the world on the 4th of June, we can't wait to meet your son.  Congratulations and 'Geniet van jullie nieuwe aanwinst'. 

Chris and Lex, (oma and opa), will shortly have been married for 40 years.  That's 10 times as long as Thijs and I.   There are not many people that I know who's parents are still together, my parents split up a long time ago, so I am quite fascinated by what exactly 40 years of marriage can mean.  They met in university, so probably they went to each others  graduation.  They raised  two children, WOW! I'm starting to know how tricky raising one is, and they did it twice!  They've helped each other through the loss of family members and stayed strong for their children when they needed them.  Plus they're doing a great job of being oma and opa to Noah - here is Lex with Noah, Chris is just out of view.  It just goes to prove you don't need expensive toys - just some paper and Oma and Opa to keep you amused!

I observe people, it's a thing I've always done, and when I see Chris and Lex together, they still laugh at, and with, each other. They explore places and travel long distances in the car together, if that's not love I don't know what is! I know how much the Dutch like to keep things understated but I think 40 years of marriage is something really special, and we're all really looking forward to raising a glass at their 40th wedding anniversary with the rest of the family and friends. Congratulations Chris and Lex.  

Noah is 11 months old - how did that happen??!!  Noah is an easy measure of the passing of time.  So much changes with him so quickly, I swear I only have to turn around and he's doing something new by the time I turn back. 

I've enjoyed my first ever mothers day - lots of cuddles for mummy!

 

He now has 7 teeth, (busy with 8, 9 & 10 - gulp!), and weighs a whopping 11.6Kg and is 78cm in length.

Once put into a sitting position, he can now hold it for up to 30 mins.

He can baby sign, "mamma", "pappa","sun", "Hi", "who's there", "spider" - I sing a little rhyme about a spider and he makes a sign to let me know I have to sing it for him - NOW! :) 

He can also make a signs for his favourite TV characters out of 'In the night garden', "Makka pakka" and "twittifer birds" .  I use this DVD to help introduce new signs to Noah and to just have fun with a sing along.  It also tires him out before going to bed - sneaky mummy!

He makes kissing sounds and is now busy trying to learn how to click his tongue.

  

We've been enjoying some free time with the help of Ben and Kinderthuiszorg nurses and also getting Noah used to the outdoors.  

We've been able to enjoy a few evenings dining at Theo and Patricia's restaurant. Total heaven!

I've had some time to enjoy a girly day in Amsterdam with friends, getting pampered with a new haircut and a pedicure. While I was off in Amsterdam, Thijs, Lilo and Heleen took Noah for a lovely walk through the dunes and on to the beach. Here is Heleen and Noah in the dunes, Lilo is the little black dot in the distance!

Here is Noah smiling under the parasol. 

And of course no trip to the beach is complete without a drink at the strand-tent!

To top the day off we enjoyed a fabulous home cooked dinner, (cooked by my talented husband) - fantastic!  

Here's a close up of our starter as it was so delicious.  Thijs adapted a recipe from the 3 michelin star The French Laundry cookbook mmmmm! "Tartare of tomato with french beans, a herb salad and chive dressing".  We opened a bottle of wine we brought back from the USA to go with it, a Gallo 2004 chardonney and it complimented it perfectly.

On the administrative front, FINALLY we have a good result from the CIZ.  With a lot of hard work from Christa & Trudy, (from the Sophia KZ)  and Heleen, (from the Kinderthuiszorg) we won our appeal and got the full support needed for Noah.  What a blessing and a relief it is. 

To celebrate, and re-charge the batteries, we've made plans to go on holiday in July to the GretaBonteKoe Zorg en Logeerboerderij in Aalten and I am so excited.  It's a place where Thijs and I can relax and Noah gets looked after by nurses and everyone has a great time - Hooray! 

Other good news is that we're getting a new pushchair, (kinderwagen), which can take the weight of all Noah's equipment.  So we should shortly be a bit more mobile which is great especially with all this good weather we've been experiencing.  Here is Noah being fitted for his new pushchair:

We will also get the big bath and bath seat for Noah to enjoy a good splash around in - I'd better warn the neighbours about an increased flood warning! Hee-hee. :)  

As if that wasn't good enough, we're also getting a larger and higher box, (which is a really useful type of elevated play pen the Dutch have to keep small children in a safe area - see photos).  Noah is so big now that it's playing havoc with my back so I for one will be glad to be able to work at a more comfortable level.  I think Noah will get a kick from it as well as he will be able to see out much more.  

So all in all the future is a much brighter place now and there is lots and lots to look forward too.  It feels like my world is starting to open up a little bit and that's great.  

We realise that it's taking a lot longer these days to update the blog, and it's annoying if you keep checking in and there is nothing new.  So just to remind you that if you subscribe to this blog you will receive a notification via e-mail whenever a new update is posted.

Anyway, hopefully you've enjoyed the all important pictures to show you how much Noah is changing.

Bye for now,

Louise

      

Medical update

Hi everyone,

As promised an update about the results of our hospital visit. 

It is still a mixed story, but some good came out of it. Noah had an appointment with the throat specialist, who  said that his breathing problem could be caused by having a too small canule, like breathing through a very small straw. He wanted to schedule a full operation (in a few weeks) to replace his current 3,5 mm canule with a 4 mm canule. This because the new larger one may not fit in the hole, so he wanted to sedate Noah completely. We managed to convince him to give a try immediately, and it went very well. The doctor even mumbled that a 4,5 mm canule would have fitted easily (so we will insist on that size the next time we are in the hospital).

This bigger canule seems to make a very big difference. His hearth rate is a lot lower, which means he doesn't have to work as hard on his breathing. He also seems to be sleeping less, and has more energy for playing.

His diaphragm was also examined, and it has moved up a little bit, but is not yet in the place it should be. Also one side seems to be a bit more rigid, moving less. On that side his liver could be a bit in the way. What it all means is unclear, but it is not the best for his breathing that much is obvious. 

So to summarise, we are enjoying a more active Noah, but the future is still unclear.  

On different fronts, we are starting to enjoy more nursing care for Noah, so we get a break in the form of a nice diner out tonight! We are really looking forward to our first night out since February 16 followed by our first night solid sleep. Since we have some time I am sure Louise will upload the promised movies either to the website or youtube..... 

I better stop posting now before I get hit on the head..

Bye 

Thijs

Bij deze een film van 3.30 minuten. Zal wel even duren voordat hij binnen is, maar goed...

Sorry, ik kreeg hem nog niet gedraaid, kan wel met de Mac, maa heb er gewoon geen rijd voor.

Statistics, pictures and news

Hi,

First of all the statistics:
As we said, we went to the hospital on Friday for a check-up. Noah now weighs 10.830 kg, and is is 77 cm tall. (almost 24 pounds and over 30 inch). He now has 6 teeth broken through, and seems determined to grow a few more. It looks like he may get 4 more soon, but it is hard to tell as he is not opening his mouth, it must be very sensitive with all the new teeth. He also refuses to eat anything, which is very frustrating as we have to rely on the feeding him through his feeding tube completely.
The doctors were very impressed by his growth and development, but less so with his breathing. We had already noticed that the amount of time that Noah can be without his machine has dropped from 8 - 10 hours a day to anywhere between 2 - 4 hours spread over the day. This is a very scary development, as he needs to be of his machine completely (24 hours/day) to get his throat reconstruction surgery. Also with his breathing machine he is even less mobile than without. After some blood tests and an x-ray, the doctors confirmed that his lungs are not developing/growing at the same speed as the rest of his body. Although he seem very big, he actually has a small ribcage which may also be a problem. We are not sure what this means exactly, except for the fact that he needs to be om his machine more, not sure for his oxygen levels, but also for getting rid of the carbon dioxide.
We have some further investigations lined up, with a lung specialist, a heart specialist and the canule specialist to investigate the cause and hopefully cure for these breathing difficulties.
As you can imagine we are not very happy about this, but there seems to be little to do, except wait and hope for the best. So far for the pure medical news and statistics....

Now some more general news:
I'll throw in a few pictures soon to keep you all interested :-) .

First of all, our care budget (Persoonsgebonden budget or PGB in dutch) is finally going in the right direction. They have paid us the first amount, but because of all the delays, we are getting 5 months of budget in three months. This means we can now hire more help, to recover from near exhaustion after taking care of Noah on our own for the first two months. Not sure how helpfull all these delays were.
We wrote two appeals, on each to the main burocracies that handle the care budgets. The first one got turned down, was rewritten and is now being processed. This appeal is because this agency thinks Noah can be without supervision for up to 5 minutes...... We disagree. Hopefully we'll hear something soon because if we can win this we'll be entitled to a lot more care.
The other appeal we have won. This was a different agency who determines how much money the care is worth. They felt it would be a lot cheaper for Noah to be admitted to hospital, so wouldn't pay us the full amount we are entitled to (even before above appeal) . They conveniently forgot that Noah needs to go to an intensive care unit instead of a normal hospital.... Luckily it only took a few letters to convince them to pay us in full.

We have now hired nurses to give us some time off, mostly during the weekend. Also we have hired a lady to help Louise during the week, for 4 mornings. All of this doesn't mean daddy can now lounge about, he still has to take care of Noah! :-)


Noah had a fantastic bath, which we had on loan for two weeks. Next Thursday someone from the municipality comes by to see if we are entitled to get the bath permanently. But for now it is back to washing with a cloth, and only an occasional bath in the big bath. As soon as I figure out how to edit, reduce and upload the movie you can see for yourself how much fun the bath was/will be again.

Opa and Oma are also helping us out, and Noah loves their visits. The grandparents have been taking care of Noah on their own mostly, which is another break for us, so we all feel better after their visit.


Some times they even bring a present along! Even if the present is not for Noah there is always wrapping paper to play with! hooray!


As I mentioned before, Noah is doing better on his development, he is grabbing stuff much easier (glasses are no longer safe), and rolls from side to side easily. He still doesn't roll on his belly, but with all the teething problems he has also had a sore belly very often. Can't be nice to lie upon. Here daddy is trying to help Noah do some fitness (It could also be a general playtime, though :-) )


Another thing mentioned before is that Noah doesn't eat anything himself anymore. We still try to get him to eat, by sitting him with us during dinner and trying to feed him some stuff.


But lets be honest, when you manage to get more home made chocolate ice cream around your mouth then in it, we are not sure that you deserve any real food.....


We now manage to leave the house together sometimes, when we have a nurse. Although Louise wants to go shopping I sometimes manage to convince her to do some healthy stuff, like walking on the beach. Lilo is very grateful for these walks.


Louise exercising. She is actually taking her exercise very seriously now, not only by weightlifting Noah, but she also has a fitness trainer coming by the house once a week to help her with a custom made fitness program to get back in shape after the enforced bedrest, operation, and stressful times from the last year. I could probably do with some of that as well, I guess....

And a dog trying to find the ball in the foam


For all of you that managed to get this far a few bonus pictures. noah is trying to show of how cute he can be for our new camera.


And the last, where Noah pretends to be an angel. We know better though.....


I hope you've enjoyed all the pictures, we have some more on the camera, and some movies that I haven't uploaded yet. Still to come: bath video, play videos, walk outside and more news. We have another oppointment in Rotterdam in the hospital on wednesday, so I hope to be have the technical details sorted by then to give you another proper update.

Thijs

Very Busy Doing ... Stuff!

It's been far too long since we've posted an update; don't worry though, there is nothing seriously wrong or anything like that.  Noah has just put his considerable will to growing teeth, and that is exactly what is happening.  He's not able to be off his machine for very long which makes it a bit of a nuisance to move about and a little more work.  

He now has 6 teeth cut, and he has 4 more on the way.  This means that his system is a little bit run down so it's pooh nappies, infections and just a pretty miserable time for him and not that much fun for us.  It's not all miserable though.  As you all know, Noah is one tough little cookie.  His development is coming on in leaps and bounds, he's a totally different boy now to how he was in the hospital.  

Some things have taken a step back, like his breathing off his machine and his eating solid food, but we're confident that this will improve once he's not so focused on growing teeth!!

We've got some pretty cool videos and pictures stored up to show you what Noah has been up to and how he's changed in the last 4 weeks.  So we ask for your patients a little while longer and we'll try and get them uploaded as soon as possible.

We're off to the Sophia hospital tomorrow for a routine check up so we should have some official statistics on Noah's length and weight to share as well.

Speak to you soon,

Drostens 

Busy doing nothing.

Pictures have arrived!

Some moments in a typical day of Noah: The night time routine

Getting sprayed, to make all the stuff in his lungs nice and loose, so no thick lumps that block his breathing tube in the night.

Change into his pyamas...

A story before bedtime

Sitting on grampy's lap

Fighting sleep

And finally asleep!

Original post....

Time does keep passing so quickly. Another week is over and we still haven't posted any pictures!! It has been an exciting week. Noah has grown another tooth, this time at the top. The other top front tooth is close but it's taking it's time coming through. We're hoping it will be through in time for Easter and then Noah will be our little Easter bunny with his two top teeth!

Zaineb has started this week. She has quickly become my right hand. It's been great to work with someone, it's a lot less stressful with two. Noah has been ill this week and has not been off his machine as much. My goodness it's hard work when he's on his machine, how quickly we'd forgotten this! He is so much less mobile, you have to do all his care bent in awkward positions, of course this is no fun for Noah either being stuck in one place.

We had to take Noah to the hospital yesterday to get him checked out as his condition wasn't improving. He has a cold but luckily his normal dosage of antibiotics is helping to keep it from getting worse. Noah is his usual sunny self with periods of grumpiness in between. We experience his cold as a lot of suctioning (also during the night) and we spray him more often to help get the slime loose. Hopefully he will be well again soon.

I finally got out of the house and went into town to meet a friend and do some shopping. Thijs has now decided it's a good thing I don't go out that much as when I do, I spend too much. I have tried to explain that buying a new computer when it's on sale is a saving - but he just won't understand this. He is so stubborn sometimes!! ;)

We've made some social plans for the end of this month and so we're looking forward to going out as a couple. We're starting to think about how we can arrange for more time together. I know this might sound a bit strange to some, but you see we work like a tag team here. If Thijs looks after Noah I can go out and do something, and vice versa, it's actually impossible to do things together while Noah has been so out of sorts. So that's why we're now thinking of perhaps getting a nurse in once in a while in order to be able to go out together and walk the dog up the beach or just go shopping together (although I think Thijs would prefer we stay away from the shops!!). Now that things are settling into a routine we have the space to think about things like this.

On the administration front we have had some contact from the various offices, and they are now considering our case. So it's at least some progress.

Things are settling down so well here I've even taken time to look out the window. It's beautiful Spring sunshine out there. I'm feeling optimistic enough to even think about having time to plant some bulbs in the window boxes. Yes, yes but first we'll post some photos!