Monday, August 2, 2010

Update . . . Again

The NFED Conference was excellent again this year.  Chris and I did a question/answer session with Mary Kaye Richter in one of the first sessions.  Here we are pictured with the founder/President/CEO of the NFED.  She is an amazing woman that had an incredible vision for this organization 29 years ago when her son Charley was 2 years old.  She has brought it so far and touched so many families.  We are grateful for her passion on the issues we face with Ectodermal Dysplasias.

The conference days flew by fast . . . but we all enjoyed time with old friends and meeting new ones also.  This "family" of ours is a vital part of our life and we feel blessed to be able to experience this conference each year.  Here are some pictures of our NFED friends.

 Ryan and Zach Hamm

Nollan Wang, Tyler, and Zemery Dennis

 Andrew and Ally Kelso

View from the resort - so beautiful!!!

Ryan and Morgan Kelso paddle boating (they are like brother and sister)

Just before sun set


Bonfire at the beach at sunset

 Andrew roasting marshmallows


Teetay and Andrew

 Andrew singing "Away in a Manger" at the Talent Show 
--- he had stage fright and not one word came out of his mouth

Tyler playing "Alma Mater Blues" at the Talent Show


Tyler's EEC Support Guys - Marc, Jack, Grant, Zemery

Tyler's best buddy, Zemery

Andrew and Ally at the Kids Camp performance on the last day

Grant at the Kids Camp performance
 
 Dancer at the Flying W Ranch

All our kids with the dancers
Tyler, Ryan, Zemery, Morgan, Meredith, Andrew, Zach

Meredith Heuring, Andrew, and Morgan with their hats

Family picture at the Flying W Ranch

View of the stage at Flying W Ranch with the beautiful rock in the background

Ally and Andrew (with his cowboy hat on)

Kids at the Air Force Academy
--- Andrew, Ally, Morgan, Grant, Tyler, Ryan


Chapel at the Air Force Academy

On the steps of the Chapel at the Air Force Academy
--- Andrew, Ryan, Tyler, Morgan, and Grant 
(not sure why he was so far away, but he didn't want to scoot closer)

Kid Kingdom - created by the Huxman and Kelso children on the beach
--- they even made a moat around it

Tyler with his "sister" Morgan

Ryan, Morgan, and Tyler at the park

 Grant, Morgan, and Andrew

 Ally at the park

Morgan, Tyler, and Ryan 
(as you can see they spent a LOT of time together and truly do consider themselves brothers and sister)

The Hamm Family
Zach, Paul, and Susan

 Jerry and Terri Matus 
(or Jeep and Teetay as known by all the kids)

Mark and Kristin Kelso

The McLaughlins
Kim, Derek, and Bailey(not pictured sons Brett and Brian)

Our extended time before and after the conference provided us with many lasting memories.

We are now preparing for another trip to Houston, Texas this weekend.  One of the doctors that we love from the Scientific Advisory Board at the NFED is an eye doctor who practices in Houston.  He had discussed many different tests to be done to help determine what the real "cause" of goopy eyes is and then be able to treat the exact problem.  We are headed down there to have these tests done on both Tyler and Grant.  We chose this weekend because our friends, the Hamms, are having the 2nd Annual Zach Hamm Golf Tournament for the NFED this weekend and we had wanted to go.  Being able to coincide the doctors appointments and the tournament made it a doable trip.  So, we're headed out again on Thursday, driving to Dallas and hopefully seeing some friends there, then traveling on to Houston on Friday.  Doctors appointments in the afternoon on Friday, then enjoying more time with our friends the Hamms.  We'll be there Saturday and Sunday and will be able to help get things "set up" for the tournament.  Then the tournament is Sunday afternoon, and then we'll make the BIG trek all the way home on Monday.  Please keep us in your prayers as we will be driving many miles, and also that the doctors will be able to help us figure out exactly what the best solution is to help Tyler and Grant with their eye issues.  For Grant, that has one of the toughest things, always having his eyes stuck shut when he wakes up.  We are just praying for some answers to help  make this issue easier. 

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