The Drostens: A busy week!

Wednesday, July 15, 2009

A busy week!

Oma and Opa's 40th wedding anniversary, our first holiday, Noah's first birthday and Papa turns 35 - whew!
I could write a long story about it all but instead, for now, I think I'll just add some photo's for you all to enjoy .

Enjoy!

xx the Drostens

Big smiles at the GretaBonteKoe!

The Ikea Bakfiets (boxbike)!

The puzzle is complete so a well deserved beer!

Noah relaxes while oma and opa greet their guests!

Happy Birthday Noah - 1 Today!

A bed filled with presents - I could get used to this! Thank you everyone :)

Entering the zoo

Noah meets some fish, "hello Dory!"

After a busy visit, the dudes chill out together.

"What a great birthday!"

Noah picking up music tips on papa's birthday from Baart.

How can we have a blog update without a bath video?! Impossible! Here is Noah in the bath, splashing the nurse at the GretaBonteKoe. Mummy is standing well back out of range! :)

3 comments:

Tom de Jong said...: Fantastische foto's en het was ook een fantastische verjaardag in de dierentuin. Ties vindt het filmpje erg leuk. Ties noemt Noah: Nona. En hij roept steeds: nog een keer Nona in zwembad ;).
Ties herkende Noah ook gelijk op de foto's (en hij riep gelijk Nona, Nona), dus we komen snel weer eens langs met de kinderen.

groetjes,
Tom, Judith, Ties en Gijs; July 15, 2009 at 10:27 PM
JourneyingSalmon said...: oh wat leuk! als de zon nog schijnt kunnen wij mischien naar de zee gaan.

groetjes,

Nona, louise en Thijs :); July 16, 2009 at 12:47 AM
Anonymous said...: Wat een geweldige foto's, zo te zien heeft Noah (en jullie!) een hele leuke verjaardag gehad! En tsja, een fotomodel in bad, wat wil je nog meer? X Nieke; July 18, 2009 at 12:48 AM

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About us

Hi,

We are the Drostens:
Louise Drosten-Bazzard: My wife, and co-author.
Thijs Drosten: Me, the one that does most of the writing for now.
Noah Aleidus Glyndwr Drosten: Our son, born on the 9th of july, 2008. He is suffering from a very rare thing called CHAOS, congenital high airway obstruction syndrome. Most of this blog is about him as he is the focus of our lives. He has had a very special birthing procedure, called EXIT, and he will have to live with a little tube in his neck to breathe through. He also has a PDD/NOS diagnosis, he is on the autism spectrum.
Daisy Ohana : Our dog and source of fun. (Ohana means family!)

Call to all CHAOS parents

Hi parents.
We would like to get into contact with other parents with a CHAOS child. Particularly if you are in Europe. We are active on facebook, where we have a chat group of 15 parents with children that have CHAOS. Please leave a comment and we'll get in touch.
Check this post for more information

Thank you very much!

Here are the other CHAOS children and for some, their webpages:
Tommy (Carepages, registration required)
Kalmin (Carepages, registration required)
Grant (Carepages, registration required)
Faith-Ann
Matheus
Pedro
Coby (Caringbridge, registration required)

Medical Terms

CHAOS - Congenital High Airway Obstruction Syndrome. Basically a blockage in the top of the airway of an unborn baby. Since the lungs make a lot of fluid in unborn babies this leads to swelling of the lungs, fluid retention in the baby's body and other side effects. See also: http://www.fetalcarecenter.org/assets/0/190/5081/5091/bae6f17d-8bf0-4554-ad2a-dd4fb5e0fb73.pdf

EXIT - Ex-Utero Intrapartum Treatment.
A very special type of caesarian (keizersnee) where the baby uses mommy for life support while half born. This allows the doctors to operate on him, and make sure he can breathe properly before the umbilical cord (navel streng) is cut. To make sure the mother does not go into labour, this is done under full general anesthesia (knocked out completely). Also special medication will prevent breaking down of the placenta.
See also: http://www.fetalcarecenter.org/fetal-surgery/surgical-procedures/exit.htm

Tracheostomy - A hole in the airway, usually located below the larynx (voice box, stembanden).
This hole is used to put in a small plastic tube, through which he can breathe. This tube will need very close monitoring in babies, as it can easily get blocked. Also it will prevent the baby from making noises as no air flow past the vocal cords.
For Dutch information, check: vrienden van kinderen met een tracheacanule. Especially the page 'Tips voor familie en vrienden' offcourse :-) .

Probable Causes: A genetic error on chromosome 12Q. This happened when Noah's first cells where dividing, as only a part of his cells have this error. The genes involved are 3, 5 and..... more info to be added later.

The Drostens

Wednesday, July 15, 2009

A busy week!

3 comments:

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