I will introduce myself as a new member: I am Janneke and together with my husband Theo we became parents of our special Bram in October 2014. When I write this, Bram is 5 months old and we are starting to 'get used' more and more to all the care around Bram (although I also think: does this ever get used?))
The biggest worry at the moment is the reflux and the frequent spitting up. Bram is fed through a tube because he does not eat anything himself, but he spits up a lot and we have tried all kinds of things but unfortunately with little result. Because of the frequent spitting up, we are also afraid of a pneumonia, but so far so good.
We are also seeing all sorts of specialists and it will remain that way for the time being. I just hope that it will eventually calm down a bit. Bram will be going to a medical daycare centre from mid-April (if it all works out with the Pgb application) and then I can go back to work. It's exciting, but I think it's good for me to be able to pick up some of my own life again.
In any case, I am happy with the CdLS site and with the Facebook page. Until now I was not ready to actively seek contact, because I found it quite confronting, but I think it can also be very supportive, so I took the step anyway.
