Tuesday, February 28, 2012


Kisses from Raul :)

Over the last couple days Raul has learned to scoot forward! He is camera shy, so it took a lot of prompting/tempting to get him to do it for this video though!

Walking practice! We are working on getting Raul a gait trainer so that he can be mobile!

I was just trying to video him playing with the iPhone, because it is so cute, but when my mom turned the TV off you can hear him say "all done" without any prompting!

Sunday, February 26, 2012

New EB Awareness Video

This video was made by an EB advocate named Andrea Ness. Please take a couple minutes to watch it and learn about EB, and the beautiful kids that have EB! You will see Raul on there a couple times too :)

Sunday, February 19, 2012


Some random pictures from the past few weeks:
New overalls for a late holiday party

Playing with his cars

His "lovey"

Getting a balloon bear at Summer Shack (he was actually pretty scared of it)

Smirky face

Tonight he fell asleep playing on the floor (yes, that is spilled formula on the pillow)

Monday, February 13, 2012

The Butterfly Fund

I wanted to take the chance to tell you all about The Butterfly Fund (http://www.thebutterflyfund.org/). They are a non-profit out of CA, run by the amazing Laurie Sterner! We have been helped out many times from them, starting with supplies back when Raul was still in Romania. Most recently they set up the registries of items we were in need of, and Laurie wrote a wonderful story on us (http://storify.com/lauriesterner/someone-i-think-you-should-meet-1). In between those we have received many packages of EB safe clothes, toys, linens, etc.

At Christmas time they did an amazing event called "The Secret Stocking Project" where people signed up to purchase gifts for children, and their siblings, fighting catastrophic illnesses. Raul was also able to participate in that program! I know SO many families were positively impacted by that program, and I hope The Butterfly Fund gets enough support to be able to continue the project next Christmas!

Today we were surprised by two boxes waiting at our doorstep! We received toys, books, super soft bamboo crib sheets, a temporal thermometer, and adorable socks with butterflies! Also included was an adorable cow-hooded towel, complete with a tail! Raul LOVES his cow towel, and wore it over his clothes through dinner and now playing upstairs with his cars!

If you are looking for a worthy charity to give to, please help support The Butterfly Fund! They do amazing things for families with sick children (especially EB), and deeply care about their work! Thank you to The Butterfly Fund for all you do, we truly appreciate it!

Saturday, February 4, 2012


Please go to this link and login to click the "up arrow" next to the photo (all you have to do to login is pick a username and password)! The more "likes" our story gets, the higher it goes on reddit's page, and the more people read it! We are hoping to spread awareness of our story, but more importantly spread awareness of Epidermolysis Bullosa! Thanks!


Friday, February 3, 2012

Bath Night

Blowing kisses

Happy to be done with bath/bandages

Just out of the tub