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 who she is for all of her days. Epidermolysis Bullosa (n.) :  loosening …

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 bit of a routine, and I have learned how to handle the wound …

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 is going on here. We have had “mommy hold you” happen… at her …

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 new journey, and I figured if anyone had a good suggestion, it would …