>You might be a Green Bay Packer fan if something like this adorns your shelves next to the Lambeau Legends DVD. Amigo calls this little guy Hank. La Petite calls him “hideous”. He sings (loudly) and dances. The song? The “All My Rowdy Friends” song from Monday Night Football, of course! 
>Disabilities are part of our family, our daily life, the little things, the big picture. Doctors’ offices? A familiar place, a comfortable setting. Amigo saw two doctors in two days last week. He noted the fact, but didn’t complain or think it was negative.
He’d been complaining of minor discomfort in his right ear. When he told me it was getting worse, that his ear hurt, I called the pediatrician’s office. Nine times out of ten when Amigo complains of ear pain, he has an infection. He is almost never wrong. Sure enough, his right ear was (as Dr. put it) “a prototypical infection”. Then she took one more step, and asked if we would allow the medical student to come in and take a look at it. Her logic was “This will give the student a chance to see a poster child for an ear infection, but in a child who will sit still.” Amigo is in his teens, and the medical student would get a good look at an infected ear without the squirming of a toddler or two-year-old. Amigo was personable and friendly with the medical student, discussed her alma mater’s basketball team, and showed her a perfectly infected eardrum.
The next day we headed to Children’s Hospital of Milwaukee for an annual check-up with the pediatric neurologist. She’s an amazing professional with incredible depths of knowledge about children and their brains and bodies. We discussed Amigo’s participation in a study, and she agreed that yes, his participation would be a good thing.
The only issue is money. This is no simple blood test. The cost estimate is around $1300. I am gathering my courage to call our insurance company. I’m certain they will say no; they really balked at the genetic counseling recommended for us. Next, I’ll apply for financial aid through the research center itself. Their forms, however, are on a web page still under construction.
I’ll keep at it. Project 3000, as the study is called, is an ambitious and worthwhile undertaking. We’ll do our part for Amigo’s sake and for the sake of others with this cause of blindness. Fortunately, doctors’ offices are familiar and comforting places for our family. That makes it, not easy, but at least a little less difficult.
Now it looks like this.
