February 2005: Following his diagnosis with Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome at 8 months old, Jack has an MRI under sedation. His brain looks good.
Every three months for the next several years: Jack has an abdominal ultrasound. Jack screams and writhes on the table. I sweat and hold him down. Radiology techs sigh loudly. No Wilms’ tumor or other abnormalities are ever found.
May 2010: Jack rolls off a beanbag at school and acts like he is in pain. X-rays ensue. Clavicle is broken.
September 2013: Nonverbal Jack is inconsolable and running a fever, which he almost never does. Diagnostic abdominal ultrasound at PCH to look for appendicitis or whatever. They find nothing. We leave the ER and Jack perks right up. Because autism.
July 2014: Jack returns from summer day camp gingerly holding his right arm and refusing to move it. X-rays reveal fracture above the wrist. Multiple follow-up x-rays over the next two months chart the healing process. Multiple episodes of moaning and crying happen reliably during all x-rays.
Annually, since 2008: Visit Dr. C at Shriner’s Hospital where we obtain x-rays for knock-knees, leg length discrepancy, and pronated ankles. Jack hates x-rays, you guys. Dr. C is lovely.
This Week: Jack falls down the stairs of the bus. It’s the sort of thing that happens when you are a little bit clumsy and have low muscle tone and yet are always in a GIANT HURRY to exit any vehicle that is coming to a stop. Jack starts limping. Jack has more x-rays. I lie beside Jack wearing a lead apron on the x-ray table to get him on the x-ray table at all. Dutch, also wearing a lead apron, holds Jack’s legs and feet in the proper position for a bajillion x-rays of basically every bone from the pelvis on down. The family that gets x-rays together stays together. Prognosis is unknown at this hour.