Having said that though we have seen miracles happen, we have seen Jason trying new things, trying to eat, touching food, cooking and baking at school and actually willing to accept what I give him or feed him. It boils down to three things - extensive feeding therapy he gets once a week with his speech therapist, the assistance he receives at school with them encouraging him to eat, the sensory therapy he gets at school, the interaction with food and other children eating at school and NEVER GIVING UP. It has been a long road for us, we went to Austria in 2010 (this is where our journey started) where we went to the tube weaning clinic to get rid of the tube. Unfortunately due to Jason's health it wasn't time and wasn't meant to be. Five years down the line we are still going strong, we are still using the key points we learnt in Austria and we still consider Jason on his wean. I count our lucky stars though, I see how far Jason has come and I know one day we will get rid of the feeding tube that has kept him alive. I try and take things one day at a time and try and not let things get to me. I celebrate the little things in life. I celebrate Jason peeling a banana, I celebrate Jason making pizza and hamburgers at school - not long ago he wouldn't touch food so just the fact that he is touching food is a huge thing. Jason now eats custards, youghurt, soups, stews, banana - all pureed food and some with a syringe but hey it's food! He still loves his onion and eggs are the new thing. He enjoys eggs, not so much the yolk anymore as he choked one day and battled to get his breath back so he associates the yolk with choking. He eats the white though.
Last week was grandparents day at school. Unfortunately Jason's grandparents from both sides could not make grandparents day due to distance and working but we invited the next best person to be Jason's stand in granny. A beautiful lady we met 5 years ago before going to Austria that has been by our side every step of the way. We love her like family, she is always the first person to phone or message me, she is usually the only person that comes and visits us when in hospital - just always there and loves Jason like her own grandson. We have always called her ouma "her name" because she has been like a granny to Jason and like a third mother to me. They had a wonderful morning at the school. The theme was a teddy bear picnic where all the grannies and grandpas sat with their grandchild in the garden on a picnic blanket with their picnic baskets. Jason and "ouma" had a wonderful morning. I am so chuffed that "ouma" was able to experience a morning with Jason at his school because really his school is amazing and you have to see it to understand the amount of work that goes into a day with our special needs children, to see the love and care they receive is amazing. So "ouma" and Jason sat together and ate :-). Not long ago this would not have been possible as food made him gag by the sight of it. Jason had his custard that ouma fed him, he peeled a banana and he ate some boiled egg (with a few gags). We are blessed that "ouma" could make it and share this special experience with Jason.
I just love seeing Jason eat. To see photos and videos of Jason touching food, trying things. To see him picking the ham off of a pizza and eating it, to watch him eat boiled eggs. We are blessed and it's an absolute miracle. I celebrate every food, every picture, every bite and I thank God every day for blessing us. I know that this is a long process but I am fine with that now. It has taken me a while to accept it and been a difficult journey of acceptance for me. Bruce and I know that it will happen in Jason's time. Jason's surgeon always said to us that Jason will eat in "Jason's time" and this has been so true and exactly how we have let things be. In Jason's time. You cannot force a child to eat. It may be hard for some to understand but kids that have feeding tubes have severe oral aversion, they associate food and eating with pain, negativity and illness. There is a reason why they got their feeding tube in the first place. Jason's was severe, silent reflux. When he had his operation his oesophagus was burnt raw from the acid reflux burning. As Jason has such a strong pain threshold we didn't know he was refluxing like this. It took a few months of force feeding him for us to finally realize something was wrong. These tube fed kids have feeding tubes for many reasons. Some will be weaned one day and some cannot eat due to medical reasons. Some of them don't just eat when starved. Jason is one of these. We have tried two starvation weans and they don't work. I am happy to go at Jason's pace now and accepted that we cannot force the eating issues he has. Only extensive feeding therapy, positive happy eating experiences and time will change this. So now we celebrate all the positivity of eating and touching food.