So with Jason turning 9 this year and managing a soft diet and blended foods we are really trying to reduce our monthly costs. This means reducing the pediasure and stopping overnight feeds eventually when I run out of pump sets (we have 1 box left). I have been giving him over night feeds usually every 2nd or 3rd night and I re-use the pump sets at least two or 3 times. I am sure I am going to freak out when we do run out but this is something I am processing myself and a goal I am working towards. Weight will obviously be a deciding factor as well as we have to make sure he is nutritionally well BUT the goal is to eventually stop night feeds.
There will only be a few people that actually understand the severity of Jason's oral aversion and really only people in our position or been in our position can understand when I say Jason will not eat unless forced to eat. He will not willingly eat on his own and he tries every trick in the book to get away from eating. I don't believe he feels hunger and can go days without eating - we have tried two tube weans with him which has proved this.
We are having speech therapy twice a week - a 45 minute speech session at school and an hour feeding session on a Thursday afternoon. He is definitely progressing forward but goodness it is a LONG process, costly and something we have to constantly keep at.
I am very excited that he is eating and tolerating the blended meals. My goal is to basically blend what we are eating for dinner to make things easier for me. I am not one to cook and freeze. This week he has had cottage pie (with blended mince very fine) and lamb stew (also blended smoothly). I would like to get some more portein in - chicken, fish and meats which I will blend and normally add a mash on top so that it isn't too rich for him. His tummy doesn't handle rich foods.
Otherwise at school he has yoghurts, custard, bananas, kiwi fruit, tomatoes and onion but not every day he will try the non-yoghurt item. He has become accustomed to the yoghurt and this is something he will eat on his own without too much assistance.
At speech therapy today he tried avo, which is a good thing for weight gain - didn't have too much though. This is something I will work on as well.
Feeding and foods has always been something at the top of my list of daily things as Jason is fed every 3 hours. It isn't easy to constantly worry about an almost 9 year old having to feed him throughout the day and night and also I don't know how much he can tolerate, whether the foods are too rich for him etc. It's a case of trial and error but I am pleased with the progress and very proud of how well Jason is doing. Also very grateful to his speech therapist and school who assist us with Jason encouraging him to eat and try new things.
I am sure one day Jason will eventually eat on his own and realize "ok this is what I should be doing". I really do hope that this day comes soon because it is very tiring on us as parents to have to constantly feed and worry about a child that simply will not eat. At the end of the day we have made huge progress and at least Jason will try and eat things now whereas not so long ago he wouldn't. For those of you with kiddies that will not eat yet, Jason is a huge example that they will eventually do it. For us, it's just a case of patience now and never giving up. We will beat this and we will eventually throw that feeding tube into the sea!!