This past week has been quiet. No seizures and Ella went to two Passover Seders. The week before last we met with Dr. Lewis at Shriner’s Burn Hospital. I had been referred to him through Dr. Stoler, the geneticist, who thought he had some experience with nevus (birthmark) syndromes. I thought he was possibly young (younger than Dr. Mulliken) and maybe had some up-to-date insights or knew of new treatments for such abnormal blotches of skin as Ella has. The meeting was disappointing because right away he pronounced, despite being of advanced age, that he had never seen anything like what Ella has before, which always puts a parent right at ease,. right? I wasn’t sure if he was referring to her nevi or to the hemi-hypertrophy in her head. In any case, he didn’t have anything new to add. Instead he seemed very interested in Dr. Mulliken’s plan of treatment and who we had seen over at Children’s. Other than that, we found the nursing and administrative staff at Shriner’s to be very attentive — different from the frantic disorganization of Children’s. The building looked brand new, exquisitely decorated (for a hospital) and a we learned that Shriner’s are older men who wear dark purple fez caps. But, Dr. Lewis didn’t contribute much to our knowledge of treatment options for Ella’s skin problems. He did say that it would be worth doing a biopsy of the nevus to distinguish if what Ella has is epidermal nevus or sebaceous nevus because the later is harder to treat and has a greater chance of developing cancerous tumors later on. This was the first time I’d heard that there was any difference between the two. The whole situation just made me tired. I spoke at length to the other family in North Andover whose son just had a hemispherectomy last November. he is doing well in general and the mother is pleased, but the whole experience sounded harrowing.