2017

So since the last post;
My labyrinthitis cleared up surprisingly quickly although I still get the odd funny turn.
Josh's tummy took its time settling down after being cleared out, but he is back to having bouts of unexplained diarrhea again. The current theory is as all testing has come back ok, it is a functional bowel problem, probably caused by all the problems and interventions he has had over the years.

Aaron turned 6

Aaron continued to get worse despite the change to methotrexate (mtx), he also developed quite an aversion to the mtx due to the side effects he experienced, and consequently a real phobia of all tablets including the anti-nausea meds! We are doing well now with hiding these in other things and dissolving them and he is coping a bit better, but not before lots of tears and even actual vomiting. also the folic acid became problematic so we got that prescribed as a liquid. As it had not been a full 12 weeks of trying mtx we couldn't count it as a failure, despite worsening bleeding and diarrhea, anaemia and weight loss! So in early January he was put on budesonide, a steroid, which has settled things down finally, he is now weaning off this so it remains to be seen how it goes when it is stopped.
Aaron also had an eye injury involving 2 trips to the hospital to get it checked out.

 There was of course a nice Christmas break and Ethan turned 12!

GOS Christmas party

trip to see Santa at the Llama park

Christmas Day

smart boys

The new year saw a new batch of Humira, with the citric acid taken out, we can't tell you the difference this has made, after some numbing cream for the needle, he can hardly feel it! What a turn around for the crying and screaming.
Coming up after half term we have Josh's 2 week residential stay for physio for his hypermobility and weak muscles. This is meant to make a big difference, but will of course take a lot of planning for the rest of the family as I have to stay with him.

purple sale we held at school on their purple friday

purple friday