A couple of weeks before our treatment in Austria I emailed the Director of the Program to ask if there was something I could do in the meanwhile. She advised to cut one tube feed and let Sara get hungry and decide if she wanted to eat, Sara responded well. Then we decided to cut another tube feed and so on until all tube feeds were gone. We decided not to go to Austria but to follow their program and treatment from home and signed up for their netcoaching program instead. We email them videos of Sara eating and information about her weight and what she ate and they email us back with advise.
We are not allowed to offer her any food but we make food available to her and let her actively ask for food. We sit down as a family for breakfast, lunch, and dinner. Most of the times she participates in mealtimes and eats little pieces of food. We make eating fun by showing her that we enjoy eating but taking the pressure away from her. If she does not want to eat we respect her. She also always has snacks available to her at her reach all day (snacks in her stroller if we leave the house and by her toys if we are at home). We have removed most of her toys for now and we let her play with food instead; this is part of making food fun!
We are still hoping that Sara's weight will stabilize (that she definitely does not loose any more weight). I can not wait for the day that I will be able to report that she is gaining weight but the experts in Austria say that this could still take months. For now I am enjoying a baby that eats and is active and happy.
P.S. Thank you for those that were willing to help us by donating money for us to go to Austria. Since we are not actually having to travel to Austria I have cancelled the donations and you should be credited your money back in your account.
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