Sunday, June 17, 2012
Why is everyday the new worst day of our lives?
We came to CT Children's this morning when Oliver was having screaming fits of pain and acting very unlike himself. His eyes were rolling all around and he has no control of his head or limbs. We were terrified. His Dr. told us to come straight to CT Children's because if we went somewhere else they would end up sending us here anyway. The Drs didn't think it could be the MLD because it happened so quickly. We put him down to bed on Friday night and he was acting himself and 10 hours later on Saturday morning he was a different child, Sunday morning he was even worse. So in the ER they did a CAT scan that showed nothing significant, ran blood work that showed nothing, urine test showed nothing and we finally agreed to a lumbar puncture to rule out meningitis and other infections that could hit so rapidly. Everything came back with nothing. Now he's been admitted. They can't find anything to explain this "sudden altered state" and therefore it is likely a sickeningly quick progression of this awful disease. The worst news is that the neurologist doesn't think he's processing anything he's seeing, and we agree. He looks right through us, he doesn't track objects and he doesn't even blink when something is coming towards his face. It's called cortical blindness. He could see us this morning, and suddenly, horrifically, now he can't. Words cannot express how we are doing right now.