Bloody Baths

Aaron loves his iPad.  We call it his "precious iPad" because life would not be the same without it. Some days I want to throw it out the window because Aaron could be happy doing nothing but watching YouTube videos all day. I am grateful that he has something that he enjoys doing, so I resist the urge to do it harm. Aaron's tastes have not changed much over the past four years. Cooking shows and train videos. However, Aaron does not care for trains with faces much any more. He likes the real thing. Big, strong steam engines. He is waiting for the day that diesel fuel runs out so steam trains can make a comeback.  He can watch trains for hours and hours and hours. I show the above picture because I make him do other things. He fights me.  He only wants the iPad, but once he gets started on a fun new project, he loves it. He is soooo stubborn!

Treating Aaron's sores has been a lot of trial and error.   One thing that we do is apply these patches to cover the sores on his back and abdomen. They are made with silver which is antimicrobial. This helps to protect from infection while also protecting his fragile skin from friction. We have moved his baths to every three days. Peeling off the patches can also peel off his skin (not good). After three days they come off more easily. Usually Aaron bleeds from several spots once the patches come off. We have to apply pressure for a long time to stop the bleeding. Then he sits in a bath. The bath water turns a rosy color very quickly as blood mixes with the water. Not going to lie, bath time is tortuous. After today's bath, Aaron and I took a much needed nap. I woke up to find Aaron covered in blood. One of his sores kept flowing for three hours.   I haven't shown pictures of Aaron's sores because they are very graphic and sad.

I saved the best for last. Through the tantrums and attitude from the increased steroids and the tortuous bloody baths, Aaron's skin has finally shown noticeable improvements. I hope this trend continues.