Day 6

Today was a little frustrating, I feel like the boys didn't make a whole lot of progress and there were a lot of temper tantrums, mostly from Sam.  We are working on establishing rules with food and our roles as parents vs their roles as kids.  It sounds simple, but we have never had to deal with those things before because we have never had normal meals together as a family so that makes it more complicated.  The boys are doing a lot better at sitting at the table and playing with/ tasting food while we have dinner. Most kids are told not to play with food, but in this situation it is actually a good thing and helps them to build trust with food.  They are also getting so much better at not throwing food.  A week ago if we would've given them food to play with it would have ended up on the floor within seconds, so that is a big improvement for them.

Neither of them drank very much today, and I feel like James wants to do it but he took some drinks that were too big yesterday so now he is a little afraid to try again.  We may have to try a new cup tomorrow that will be easier for him to control how much comes out.  All Sam wants is "red juice", which is fruit punch.  I guess it's better than nothing, but after just a few sips he is bouncing off the walls and going crazy from a sugar high.  And if he is going to be drinking something it needs to have some nutritional value instead of just being pure sugar.  So tomorrow the red juice is going to be all gone and I know he will throw a fit about it, but he will get over it and hopefully just forget all about the red juice.

This is such a learning process not only for Sam and James, but for me as well.  I have learned a lot about my relationship with them and how to be more patient and understanding.  I have been trying to put myself in their place and imagine how hard this must be for them.  We are still hopeful that they will be taking enough by mouth by the end of day 10 that they won't need to use their GTubes anymore.  I was really wanting a miracle that they would be eating cheeseburgers and fries by the end of this, but it is just going to take a little more time for that.  60% of kids who go through this program don't need their tubes after the ten days. The other 40% take longer, but they do succeed and that is what is important.  They will learn to eat on their own time, and we will have great support from Heidi and other therapists during our follow up period.  We still have a few days with Heidi here though, and a lot can happen in a few days.