Well we had Thomas's latest appointment today and it has taken me by surprise. His consultant has said he is very concerned about Thomas and doesn't know what's going on with him. He is worried as his asthma is difficult to control, still drinking loads, constant colds and infections and his poor weight gain and height growth. Plan now is blood test for just about everything lol , urine sample and possibly MRI of his head. I was ok(ish) but now feel really down but at least they looking into things thoroughly I guess. He is being seen monthly for forseeable future.