Victor and his parents live in Germany. He was born with Pierre Robin sequence including a cleft palate, which made tube feeding obligate. After completion of therapy, Victor was allowed to eat orally but he refused. In early 2013, his family started Netcoaching and despite many difficulties and setbacks, Victor suceeded in the transition to full oral nutrition within the next months. We are very proud of him!
From the parents
Translated from german
Dear Prof. Dunitz-Scheer, dear Eva, dear Mrs Marinschek, dear Team NoTube,
Almost three years have gone by since we started our Netcoaching-tube weaning. With a duration of 1.5years we expect Victor to still be the holder of the record? :-)) … and now the former big problem called “eating” is actually not even a problem anymore…
After one year on self-made custard (self-feeding by spoon), we dared to offer Victor something different during our summer holidays (carrots with meat – even a different colour to his vanilla custard). Victor’s comment:”Oh, mum!… It’s orange!” and he tried it. Comment after the first bite: “Good!”. Meanwhile he eats healthy, self-made vegetable puree, pureed family meals, custard and cereals for children (with lumps which he is tolerating better and better).
This year in August Victor turned 6 years old and would have been school-aged, but we could postpone the start of school and started to think how we could use this “extra year” reasonably. Three years of inclusion in kindergarten seemed to be enough for us. So we decided for “SVE”, a kindergarten for children with physical handicaps, including therapy options. A masterpiece! Victor loves going there, he is increasing his self-confidence steadily and is making great progress!
The teacher told us: “Victor doesn’t eat much but he loves to eat!” If one thinks about the long, tough road, this sounds like the highest accolade! In these moments I am aware how thankful I am for you and the whole NoTube Team that we have gone this way so “naturally”, without pressure or force! The right steps for the future have been taken and we now benefit from them 🙂
Find attached a few photos of our big, metrically quite small (1m at the age of six), cute, lovely Victor.
Kind regards and all the best for the future,
Victor, Kerstin and Rainer Huber