Waiting

On Thursday, June 21, 2018, a pediatric physical therapist turned our world upside down, but most likely saved Callaghan's life in the process. After an evaluation, she apologized for what she was about to say and followed with, "There's something bigger going on here. I think he has a connective tissue disorder." Those words put us on the path we're on today, hopefully a path to health...

Today is Friday, June 29th, and we are no closer to any answers. Our pediatrician will not order blood work for fear of missing something and an appointment with a pediatric rheumatologist wasn't available until July 5th. And so, we wait...

My hope is that the doctor will be able to start the diagnostic process by ordering labwork to start to get answers. We're guessing at the diagnosis right now based on googling his symptoms and based on the first available specialist that might be able to help. We had hoped the bloodwork could be done this week to guide us, but the pediatrician wouldn't sign off on anything and directed us to see a geneticist or neurologist instead. The first available appointment for a geneticist is in December and we cannot wait that long. So, our journey began last week and doesn't start until next week when we finally see a doctor who will hopefully move things forward. Until then, we wait... 

While waiting, I'm trying to digest information in small doses to minimize the overwhelming feeling of despair. Based on what we know to date, we believe Cal has Juvenile Dermatomyositis (which I cannot even pronounce correctly at this point). I don't know what next week has in store for us, but I hope it brings us information on a path forward. I cannot wait any more.