We are almost 3 months tube free already. Jason is doing really well, he didn't actually have any adjustment to make without having a feeding tube. He has taken it in his stride beautifully and we haven't looked back. It's so nice not to worry about infections, plasters when swimming, having to wear a shirt so we don't scare people, leaking stomachs etc. He can now walk around without a shirt if he wants to. He has this beautiful little neat scar and it's wonderful being tube free for him and for us. When it's 30 plus degrees outside he can relax without his shirt now - a perk he never had the luxury of doing before. A common question I get all the time is "wow is Jason eating so much more now". We would love to say yes but just because the tube has gone, this doesn't mean he has suddenly figured out how to eat and wants to eat anything that he is given. This is a work in progress as it has been the past few years. People don't understand that although he has had his tube for 9 years, it has taken us 9 years to get to the point where he can survive without the tube. The tube was his means of survival because he was not consuming enough in order to sustain himself. He is now eating enough to be tube free and live a normal life. It doesn't mean that he has suddenly figured "oh yes I must eat now". This is going to take time and therapy. This is something that we work on daily, he has occupational therapy at school and speech therapy at school and we have extra afternoon therapy sessions with his speech therapist who works hard on his oral tactile defensiveness. Jason has many reasons why he doesn't want to eat or drink. It's something that is difficult to explain and difficult to understand if you don't understand oral tactile defensiveness. Half the time Bruce and myself don't understand it but we go with how far Jason has come. We would love him off his pediasure formula which costs us a fortune every month and would love him to be eating dinners with us but as Dr. Shaik always said to us "in Jason's time". It has taken 9 years to get to this point and we have to remember how far he has come and how well he is doing. I trust that once he is eating properly and not so reliant on his pediasure feeds we will be able to get rid of the nappies but this is a work in progress and Bruce and myself want more than anything for the pediasure and nappies to be gone. For now we continue with the therapy that he gets and keep encouraging him to eat what he is comfortable with eating. Oral tactile defensiveness is not easy and it's not the fact that he chooses not to eat, he needs to learn to trust food and I am just happy that we have come this far!!
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