Jason has been quite gaggy yesterday and today. Yesterday I had to fetch him from school because he was gagging uncontrollably and ended up falling asleep on the bean bags during play ball. Last week he also had a gagging episode at school and on Sunday when I fetched him from Sunday school as well. We are not sure if this is his usual cyclic vomiting syndrome or if he has something or if this is just emotional. There has been a lot of changes at school with his best friend leaving, a new teacher and a new OT. So it could be emotional and him battling with the change. Also we have been pushing feeds so he has been working really hard with Sarah and myself with eating and doing so well.
We did quite a few blood tests and urine tests. The bloods were actually pretty good. For the first time most of his levels were normal :-). I can only put this down to his eating and diet. We are waiting for his CRP result which they didn't do this morning and also the urine test for protein creatinine ratio. The protein creatinine result I will have tomorrow. I really hope the level has dropped some more. I worry about his kidneys. We will probably see Jason's nephrologist next week to discuss things.
Otherwise besides the nausea and gagging, Jason has been doing really well with his feeding therapy. Best decision we made was to push for the therapy and just go for it. The work Sarah is doing with Jason has made a huge difference in him accepting food, opening his mouth and actually asking for yoghurt at times. Today I had a meeting with Jason's dietician and Sarah and it was great to put our heads together and discuss where we are going from here, what we can feed him, how many calories he needs etc. My aim is to get rid of the night feeds which isn't going to be easy. We need to fit 800kcal which is about 3000kj into his day feeds. The only way to do this is to buy the higher calorie paediasure or concentrate the tin paediasure with extra scoops. If I can fit three concentrated paediasure feeds into his feeding day that will mean no night feeds. I just don't want to make him too full so he doesn't want to eat his yoghurt and custards. I am just going to take it slow. I have to wait for this nausea gagging phase to pass and then we can move forward.