Another round of tears tonight. This time it wasn't Shelby. It was a piece of paper.
I was doing some cleaning and organizing tonight and came across a credit card statement from our big 3 week trip to Boston Children's when we received Dan's NPC diagnosis in June 2011.
Misc items: $84.25 (includes laundry detergent, t-shirts and other assorted items)
Prescriptions: $54.47 (prescribed in Boston, filled in NY, after insurance payment)
This does not include lodging for 3 weeks, ATM withdrawals, hospital charges, and other random items.
This is the real cost of having a child with an undiagnosed medical condition. This is why people have fundraisers - to cover these out of town and unexpected expenses. This is why parents with children with serious medical conditions can't take vacations.