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Hi everyone,

Not even a week gone and another update? We must be spoiling our readers!
Well, not really, but still.... It's nice to share this news with you;
Noah has passed his breathing 'exam' at the hospital last Saturday. Noah spent 24 hours off his machine from Friday till Saturday whilst being monitored for CO2 levels. We went to the Sophia on Friday afternoon to settle in, and Noah was hooked up the a whole lot of measuring devices. They even made a video of him while he was sleeping to help them see what their analytical data was telling them, and just in case there was any strange data logged they would be able to use it as an extra tool to make sense of it.



The next morning we were given the unoficial results that Noah had passed and we were all allowed to leave early, which was good as we had time for a luxury celebration breakfast before doing the next round of tile shopping for the house. (Yes, we still continue with the building project reguardless of life changing results from the hospital).

Christa, our contact person at the Sophia hospital phoned me today to tell me he passed, and the advice from the hospital is to take Noah of his breathing machine completely. We do have to keep a sharp eye on him, as any illness or even a little cold will set him back. So today is THE day, Noah is off his machines for 24 hours.

If you can cast your minds back to Noah's 4th month in the hospital, you may remember that there were 2 criteria that needed to be met before Noah could be operated ....
1. Noah must weigh above 7Kg ... check
2. Noah must be able to spend 24 hours off his breathing machine.... check :)

So very soon the specialists will meet shortly to discuss a plan. Yes, it's a first for everything!! We hope to be informed in around 2 weeks what is the plan of action for Noah's surgery. Not that he will be operated in 2 weeks, but that we will know what the surgeons intend to do, how it should be carried out. This is the first time that this operation will be done in the Netherlands, as far as we know it's the first in Europe, so it's a bit scary and a very big deal. I know that Noah is in your thoughts and prayers, but could you please add the medical staff and surgeons to your list? :)

Noah has also had his first hair cut at the barbers. He was really relaxed and loved the pretty hairdressers fussing around him. He just sat on mummy's lap reading one of his favourite books.



On a previous post we mentioned that Noah has been to creche. One of his favorite activities is the walker. We were allowed to take the walker home for a weekend to see if it fits in with his activities and here's a special moment caught on film - I love the music playing in the background, it was accidental but it seems fitting, this is Noah working at walking. :)


At Creche Noah is going from strength to strength. He's learning about cause and effect, the ball falls in the hole - Noah can get it out!


He's learned to scoot down the slide. Which is amazing since before creche he wouldn't even try to move himself.

Noah also loves the swing. He's such a little Tarzan in the Gym hall!



We've also been scratching our heads for a long time on how to get Noah to try all the wonderful food that's available. However he's very intolerant anything being put in his mouth.
One of Noah's nurses, Heleen, has now cracked the case ... she poured water in her hand and "Hey presto!" we have the bobbing baby bird slurping up the water, or even thinned down food. We of course have this on video ... take a look ....Baby Bird



The house is progressing well. The builders will take a break for Easter, which is just as well as we're waiting for the Electricity company to move their meter. This apparently is a MASSIVE job and has so far taken the Electricity company 8 weeks to arrange. Note that it's arranged and not done yet!! Hopefully this will be resolved shortly after the workers return from their holiday. It's quite important that the meter gets moved as it is positioned exactly at the bottom of a very steep staircase.


Noah isn't yet fully mobile we wanted to make sure that the stairs are compatible for a chair lift (as a precautionary measure). This is one of the big reconstruction jobs in the house and without the meter being moved, we can't rebuild the stairs, which means the wooden floor can't be laid, which means the kitchen can't be installed. I just love monopoly energy companies, they are sooo user friendly!

Never mind, we can handle the stress, we seem to thrive on it!! ;)

House & Noah Update

Hi everyone,

It has been very busy here and unfortunately blogging is one of those things that get left behind. Exactly when lots of things are going on, we have no time or energy left to tell you all about it.

Oh well, time to catch up a bit.

First of all: We now own 2 houses, being rich (in debt) landlords for a few weeks. We signed the papers for the new house Monday morning, February 22nd. The builders arrived in the afternoon for a good demolishing session. Christian and Willie, my apologies, but the builder wanted to get started. I also think they enjoyed it....

Here is a step in the process of clearing the house. As the previous owners had died and their children had not cleaned out the house, there was a lot of old stuff. A bit creepy almost if you think about it for too long. Anyway, the open space was quickly filled with building supplies, and work has been going quickly since day 1.

Anyway, builders need money, and cash is still preferred for all their shopping so we had to handle more cash then I have seen in a long time. It felt good, until I had to hand it over.

Now, three weeks later the building process is really taking off, the central heating system/kettle has been  replaced and about half of the radiators are already in place.

The electricity has been renewed on the top two floors, and walls are getting plastered to finish off all that work.

Our bathrooms are stripped, and pipes are being put in place for the taps and drains. About 4 new window frames have been made, for their necessary places.

So what have we been doing while the builders where busy? Unfortunately we couldn't sit back and relax, but we have to work hard to get everything organized, ordered and delivered. So floors, kitchen, bathrooms, radiators etc. Running around to find stuff we like, and then find it at a good price.

Allthough everything is moving really fast, the house will not be finished soon enough for us to move before the 1st of april, so we have decided to take my parents up on their offer and stay with them for a few weeks. Hopefully everything is finished  before the 1st of may, and we will move to our new house around that time.




So what is Noah doing in the mean time? That is what you want to know, really, isn't it?
He has been doing really well, progressing in many area's. First of all he now goes to day care (morning care) at the medical revalidation center twice a week. He gets lots of new and exciting things to do there, and there are a lot of medical specialist with the group to help and to see what he could use a hand with.We have promised to just publish pictures of Noah, so you don't see him playing with the staff or the other kids, but he really does most of the time. It's a privacy issue, as not everyone wishes to become famous!


Anyway, here is Noah in their gym class, going down the slide.

As he still can't stand without support for more then a few seconds they also tried him in a special baby walker.He loves standing, and is slowly starting to realize that he can now move around by himself. It is a big mental step for him, as he has never been able to get around, crawling or walking.

There are also the usual games, singing, toys etc.

As he rreally likes his walker, we have one on loan from the medical daycare, for the weekend. Look at me walking about!

Another thing that was supposed to happen, was a test in the hospital to see if Noah can do without his breathing machine for 24 hours/day. Unfortunately he went to daycare for the first time just before that and immediately got a cold. So no test, as the cold really made his breathing more difficult. We have been working on it since though, and he has done a complete day without his breathing machine on three occasions now, needng his breathing machine only every other night for a few hours.
So a repeat test is scheduled for next friday, where all his vital signs will be monitored overnight. We also hope to speak to a few doctors to see if, how and when Noah can have his throath reconstruction surgery.

So more then enough to keep us busy, whoch explains the lack of blogging. It is a shame because we would like to tell you all the little details, and there are many of them.

Till the next, hopefully sooner update

Thijs