Sorry rambling. How did the appointment go..... Well it went well. His weight 4 weeks ago was 18.5kgs and today was 19.7kgs - whoop whoop. HIs height was 1.175 and today was 1.195 so he has gained weight and height :-). His arm circumference has come down from 14.2cm to 13.2cm which means he is losing muscle and fat. We have been keeping a strict daily dairy of what he eats orally during the day which I have provided the information to the dietitian. What we need to do now is try do less paediasure feeds and more "food" feeds. I tend to push the paediasure because I know the calorie content, the goodness in each feed and I know he gains weight with paediasure. So the trial will be to reduce the paediasure and increase solid foods. I have been including soups and stews but we are going to try and add more variety of foods as well as texture because everything I have been giving him has been blended. Sarah (feeding therapist) has been working hard with his oral stimulation and desensitizing his mouth. Jason is still learning what to do with the food when it hits his mouth. He still needs to learn that he needs to chew and swallow. This will all come in time.
So all in all a good appointment as much as I dislike going and have to compose myself before, during and after the appointment. I guess it would be the same for any tube fed mom being told what you kid should and shouldn't eat and what you should try feed them. Heck if Jason could eat those things I would be ecstatic but for now baby steps and I will continue to take things one day at a time.
We did have some stew today which was unblended and I fed him with a spoon. We had lots of gagging and chocking but I talked him through it and Nicole his little sister was right there beside him demonstrating how to chew :-). He did really well and we will continue to include different tastes and textures and see how we go.