Tag: EB

EB Awareness Week!

Today is the kick-off of EB Awareness Week. If you’ve read my blog for a while, you know what EB is. If you’re fresh to the awesomeness found in this corner of the internet, you’re about to find out what it is!… Read More

What Does Life with EB Look Like?

What does life with EB look like? It looks like swinging on swings at the park. Epidermolysis Bullosa is a genetic connective tissue disorder. There are many types and sub-types, each affecting the individual in different ways. Regardless of type or sub-type,… 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

July Gifts {Day Four}

A gift in RED, WHITE, and BLUE!! This girl is celebrating her FIRST 4th of July!  When I saw this red, white, & blue butterfly shirt a while ago, I snagged it and saved it for today. For those not, “in the… Read More

Protected: pink shoes & cake

There is no excerpt because this is a protected post.

a little bit butterfly, a little bit fish

Today was a first for our little spitfire.  We took her to the neighborhood pool, and well, she loved it! She loves bath time, so I wasn’t worried about her being afraid of the water.  We took it easy, letting Dad walk… Read More

a wonderland

Yesterday I mentioned that it was good that we had two days of filling up the love tanks because today was going to be a new experience.  And, as per the norm, new experiences are FUN (until they aren’t any more!). We… Read More

fruitful {how to deal with the EB questions}

When we’re out with Julianne, she draws people’s attention.  This is inevitable, and we were aware that this would be the case for our family.  We have a beautiful family… but the fact that Julianne looks different from the other children doesn’t… Read More

EB & expectations

Recently all four kids were out playing in the front yard, and riding bikes in the cul-de-sac.  We moved to this house in the middle of last year, and the bigger yard and bike-riding space has been a gift for my outdoors-loving… 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