Friday, March 19, 2010

24X7

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!! ;)

4 comments:

Wilbert van Dolleweerd said...

Mooie foto's weer van Noah. Het is goed te horen dat er allemaal vooruitgang is.

Tot binnenkort!

Anonymous said...

Best news. I love this post. Congrats. I know the surgery is scarry and overwhelming, but I am so excited for you. If you have questions for Kal's doc, email him, we gave you his email. I am so excited for you, it will be great. Marci

Anonymous said...

Great news that he passed the test, hooray!!! HAPPY EASTER!!!

Sam and Patrick

Anonymous said...

geweldig om noah te zien lachen in/op die schommel!! echo super! hij lijkt heel goed vooruit te gaan op de creche, fijn zeg. X Nieke