Tag: EB adoption

Earrings in Heaven {World Rare Disease Day 2017}

“Mom.  One day, when I have good skin all over me, I can have earrings, right?” *gulp* Because, truth is, unless there is a radical gene-altering cure found, EB is a part of who she is, and will be a part of… Read More

halfway through the summer with EB

Caring for a child with Epidermolysis Bullosa is one of these things that requires a pretty hefty learning curve.  As we are now 5 months home with Julianne, we’re still very much in the learning stage.  I mean, we do have a… Read More

filling the love tank

What is it that people say when they’re sorry but not really sorry about something? That’s what I am. Sorry for the back-to-back posts. Not sorry at all because it’s cuteness that MUST be recorded. Another great day?  Yes.  That is what… Read More

it started with a question…

“What kind of pajamas work best for EB kiddos? Suggestions??” That’s what I posted one day not long after coming home with Julianne in a private EB (Epidermolysis Bullosa) group on Facebook.  This group has been so helpful to us in our… Read More