Visitors, Birthday, Hospital and other stories.

Hi everyone,

We had another busy couple of weeks, so a quick message, with some pictures. We actually didn't take many nice ones, so you'll just have to wait for the next update to see some proper pictures :-).
Lorraine, a friend of Louise and Noah's fairy godmother visited us, and I took some time off, so we had some time to enjoy a holiday like feeling. Louise celebrated her birthday two weeks ago (yes we haven't been updating very much), which we celebrated with a very nice diner, and some cakes.

We also had to go to the hospital, for a 24 hour observation. All went well, although no news or anything about his belly.  The outcome of the observation was that we can reduce the amount of support the breathing machine gives him. Although he will stay on it for the same amount of hours, it is a big step ahead. The support is reduced by about 25 %, and so far he seems to be doing good on his new settings.  Noah wasn't too grumpy in the hospital, but we think he prefers being home a lot more!

As I mentioned the doctors didn't investigate his digestion problems very seriously. We are very angry about this, and have send a letter to the hospital concerning this. Just to show you what we mean, a few pictures (not very nice ones unfortunately). 
As you can see his belly resembles a balloon sometimes, and taking the air out is not a nice thing to do, as it is very invasive.

Noah's belly can shrink up to 10cm when he has no air in it.

 Unfortunately Noah also caught a virus in the hospital (or shortly afterwards) so he had a pretty high fever last weekend. He had a 39.0 celsius (102 fahrenheit) temperature on sunday, but some stronger paracetamol and a good night sleep dropped the temperature, and he was a lot better by wednesday.

So we took it easy for the last few days,but manage to get out for a few nice walks. Since this is the Netherlands, the weather is sometimes a bit wet. That does not stop us though! Out in the rain!

We hope to post a nice update soon, as we are taking steps to resolve Noah's digestive problems.

Thijs

Call to all CHAOS parents

Hi everyone,

As we are slowly adjusting to life with a child with CHAOS, we are wondering how other parents go through this. We are also curious about your experiences, tips and most importantly how your child is doing. We know of one other child with CHAOS, Kalmin, in the U.S.A. and really enjoy talking to his family through skype.

Thus we would like to get in touch with you! So, please send us a mail, and hopefully we can get in contact and help each other out. We have opened a special mail address for this:

CHAOS supportgroup at gmail.com (all one word before the @ sign)

With your permission I would also like to gather some information about the doctors that have treated your child (names, specialisation and email address of the treating doctor), so any doctor with a new CHAOS child can get information from his or her colleague. This is also important for us, as Noah will need throat reconstruction surgery in the future, and this is still a very experimental procedure. So any extra information is welcome. We will of course supply you with this information as well.

Thank you very much and we hope to hear from you,

Noah, Thijs and Louise