still no improvement

Aaron has now had 2 weeks on total liquid feeds no solids, the tube was fitted after a few days struggling to get much into him, the pump didn't arrive for another week which made it very time consuming! To manage the feeds I have been in at school whenever Aaron is and feed training eventually took place yesterday for the staff who have kindly said they would be willing to. Hopefully after half term after easing them into it I will have some time in my days again! It has been useful though to be in school to help Aaron gain in confidence and energy, he fell asleep in the staff room yesterday!












This week we went up for another dose of adalimumab and also saw his dr at my request after worsening symptoms, they have added a nightly suppository medicine (which he said stings and wouldn't take it the 2nd night) and some lansoprazole to help his stomach which the scopes showed was inflammed, if no improvement we have a cupboard of steroids to start in the next few days if no improvement. There are not many options going forward 2 she mentioned were admission to hospital for total bowel rest TPN or applying for a new medication for him to be allowed to use (currently not for paediarics)

We are back up next week for a joint Aaron and Josh clinic appointment during half term and another dose the following week.
Aaron is doing ok but struggling with all the interventions especially the no food, injection which makes him sob more than he has done for anything else including the feeding tube, and suppository