Confession of an EB mom

This morning I hated being an EB mom. “Hated” is such a mild word to describe it too. Nicky woke up in a lot of pain. He tried to pull something off of him, ripping skin off and causing a wound that was already bad to increase in size and bleed profusely. As he was crying in pain I had to change all the bandages on his bottom and upper thighs which were green, apply healing ointments, cover and wrap as much as I could. Thank God I had morphine to give him. He is sitting peacefully playing his game now, and I can’t get over it. I am still shaking. I then came across an article fromRead More