We have started a new adventure teaching Maarten how to eat and drink with his mouth in stead of being fed by his mama and papa through his tummy-tube. This is a pretty challenging task since Maarten is almost 3 years old (his birthday is coming up this Sunday!) and he has all his life refused to even look at food, let alone touching or trying. He occasionally licks on a baby teething cookie, but that's about it.
Therefore, we have enrolled him into the specialized tube-weaning program (or intensive feeding therapy) of Seattle Children's hospital. The idea behind this program is very simple and logical: tube-fed kids don't have any reason to try food because they are never hungry and simply don't see why they should bother. The cure is also deceptively simple: reduce the amount of calories the child gets to an absolute minimum and let hunger wake up the internal instinct of the kid. Now, the difficulty is of course to actually do this and stick to it, but the success rates are very very encouraging and after a year of debating, we finally took the plunge.
So we are now at day 5 of the intensive wean. We have cut down his usual diet (with the help of nutritionist) and we go twice per day to the hospital to have breakfast and lunch with Karen, our therapist. Despite being hungry as hell, Maarten is still in a surprisingly good mood (our trooper!), but he did already go through a couple of different phases, starting from licking more cookies (yeeeaaahhh), to refusing all cookies (aaaaaggghhh) and today, for the first time ever, being more comfortable touching and playing with different types of food (...........- holding our breaths). He also has been feeding mommie all sorts of stuff today (imagine sitting at the dinner table eating a lovely plate of pasta, and your 3-year-old starts to feed you sweets, one after the other, after the other, after the other, hehehehe, thank you sweetheart, that is delicious!). Well, we treasure this spark of hope and keep our fingers tightly crossed!
To be continued....
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