Our Trip To Houston in Pictures

That's a group of pure awesomeness!!

Our trip is done.  I'm wiped out.  Emma is slowly trying to get back into the typical summer days.  There are 3 more weeks until school starts back. So here is a taste of our week in pictures...

Train ride at the Aquarium.

Because our girls don't sweat, we need to be able to jump lines so they don't have to stand out in the heat.  Unlike you & me, their bodies cannot regulate their body's temperature.  Our girls have to use cooling vests, spray bottles, wet towels or shirts, SPF/UV protection clothing & so many other things to keep themselves cool.  Many people waiting in lines don't understand why us moms have to speak up & ask to be able to move ahead of everyone else.  It's because if our girls overheat, it requires a hospital trip. And they deserve to have fun too.

Our new friends for life!! Dawn & her daughter Sara.

Dee Dee & her daughter Jade. We met them last year at the conference & they are wonderful friends for life too!  Dee Dee was our buddy at last years conference.  She made our time at the conference awesome & stress-less!

Arriving at the Aquarium with our Goltz Families for some fun after a hard day in clinicals.

They had a white tiger!!

Our awesome Goltz families!  These are our lovies affected by Goltz.  Look closely because we have a little boy in our group this year!  All of these kids are beyond awesomeness.  They are opinionated, loud, crazy, whacky, silly, fun, beautiful, & wonderful gifts!!

Thursday Night we had a NFED POOL PARTY!!

All sorts of party things were happening.  There was swimming, of course, but also a cool NFED scavenger hunt contest & hula hoop contest, sno cones too!  Great fun was had by all.

Friday the kids had a Cowgirl/Cowboy day!  Free authentic cowboy hats for all the kids!!  Face painting, play horses, games, stickers, and a photo booth.

And the night ended off with a great big huge Talent Show!! Kicked it off with a mariachi band then tons & tons of great kids & their talents.

The cup song! 

singing

singing

singing

hula hoop 

telling jokes

reading a story from braille

guys singing

singing with motions

singing

"This Girls' on Fire"!!

Fun to see all the young boys dancing & the 3 young girls in the back wondering what they're doing up there with all these crazy looney guys!  lol

Emma told jokes too!!

She was so very nervous at the beginning, but warmed up to it & by the end was wondering why she hadn't been called yet! :)  She did BEAUTIFULLY!!  I was so proud & wanting to take pictures that I forgot to start the video until she was 1/2 way through her jokes.

(sure hope this video works...)

 

 And then we find out when & where next year's get-together will be.
Columbus, Ohio!

 The NFED has a website: nfed.org  it also has a page on facebook. Keep yourself in the loop & become their friends too.  It's through the efforts of those involved that word of Ectodermal Dysplasias becomes more known in the general population.  Without awareness of our differences, we're no better than we were yesterday.

Thank you again to everyone who supports us & is there for us.  We greatly appreciate you and all you do!!

Family Conferences

We have finished up the Goltz Research project part of our trip & have now begun the main NFED Family Conference.  Switched hotels. Registered. Finally got our room. Had a big dinner & hoe-down Texas style.

There was a mechanical bull.

She may not look it, but she asked to ride that bull.  :)

Some of our Goltz families have had to leave & say goodbye for now. We hope to see them another year.  Emma made a new friend, Sara, & they were very sad to part.  I'm so glad we all had the chance to meet & be with each other even if it was filled with lots of doctor queations & waits. There were 19 of us families!  Thats got to be a record.

We have been so busy. Yesterday we got to hear from the scientists that will be working on the Goltz research. We also have gotten to meet Dr. Goltz himself. Today was packed with clinicals. The clinicals were with specialists from Gyn, Dermatology, Dental, Growth & Development, Genetics, Orthopedics, Opthalmology, and to finish it off they took a little blood and a skin biopsy. There was a lot if waiting & lots of tears but Emma did really well!