son still feeling poorly, stomach problems from the condition, causes swelling and pain inside. so cant eat much in one sitting.
sorting out school , and he may have to have a teacher from school come to our home. hopefully once he has this condition under control he can go back to school. however he may have to drop some of his subjects and just do exams on the core ones.
we can still only take one day at a time. I make sure there is a responsible adult at home if i have to step out, even for a short time, and take my phone with me. Stress levels are still very, very high, as we get to grip with the realisation that he has such a rare condition, and that we may have a long way to go to get this under control, medically.
Then, of course , there are side effects from the meds.