Nice surprise yesterday and today. Jason has hit 15 kgs again - yeeha!! Now that his weight is up again we have started reducing his night tube feeds. I have decided to reduce it from 700mls to 500mls and see how we go. I am not sure how fast or how slow we are going to reduce, all I know is we have to try our best to make sure he is eating and drinking well during the day in order to retain his weight. I have lots of homework to do regarding adding calories to his diet. I know from experience for myself what is good for weight gain but that's not the problem. The problem is getting him to eat it or keeping it down. With Jason's chronic diarrhoea lots of things trigger the diarrhoea and make it worse so we have to be careful and monitor what makes it worse. Hopefully as we decrease the night tube feeds his diarrhoea will improve. Jason has NEVER had a solid poo - changing Nicole's nappies for the first time actually shocked me seeing what normal is meant to look like and she is only on formula. Well it's all a case of trial and error to see what agrees with Jason and what doesn't.
This week Jason did very well trying different foods and the quantities have also increased. Wednesday was the first day that he ate a 200ml stage 3 purity in one "sitting" and not only once, twice! His little bird mouth is opening better which makes a feed much faster as well. He also ate mash and gravy for the first time, pronutro for the first time and celery - yes celery. Strange child of ours. When I was making a soup yesterday for us and for him he was eating his usual bowl of raw chopped onion and I was cutting the celery and decided to add the celery to his bowl to see what he would do. I thought because it was a different colour he may throw it back at me but to my surprise he picked it up and ate it piece after piece! He seems to like crunchy unusual tastes. At school he is eating yogurt, mashed banana and flings. He is eating what the other kids eat and he is starting to feed himself the yogurt which is great.
After thinking so much this week about where are we going with Jason I decided it was time to see the neurologist. I have made an appointment for Friday against the horror of how much it is going to cost for an hour appointment. As much as it is, we really need to have a follow up and see what he has to say about Jason, the blood tests and the brain injury. I am very interested to hear what he has to say. I hope he doesn't go down the route of testing possible syndromes again. The last time we saw the neurologist was in August 2010, a month before we went to Austria. He didn't feel it was the right time to wean Jason because of his weight but we decided it was necessary and the right move in Jason's recovery. Our paediatrician has seen the neurologist since and had a lengthy discussion with him about Jason and he is very pleased to hear that Jason is eating. I am looking forward to telling him how well Jason is doing since Austria and telling him that now that he is eating he is medication free!!
So lots of positive steps this week gone. We will see what the next week will bring.