What an inspiration

Some of you may have already seen this, but I wanted to post this video on YouTube from the NFED Talent Show last week in Virginia. Keep in mind that about 300 people were at this event and I don't think there were any dry eyes in the room when she was done. This is Ally, the daughter of our dear friends the Kelsos from Virginia, singing Zippity Doo Dah (Ally and her sister Morgan are "adoptive" daughters to us). Ally is 4 1/2 years old and is almost completely blind. She has EEC Syndrome just like Tyler and Grant. She has the most amazing personality, is so sweet, and is truly an inspiration to all of us. We love her and her family and feel blessed that we've met them through the NFED. This year we were fortunate enough to be able to spend about 8 days with them touring Washington DC and then attending the conference. Having children with the same syndrome has created a special bond between us and our friendship just continues to grow. Thanks for your inspiration, Ally.

http://www.youtube.com/watch?v=IL09ye6vtEY

The Last Half of Vacation

On Wednesday we traveled to Williamsburg, VA but made a slight detour through Charlottesville to see Monticello - the home of Thomas Jefferson. I love this mansion and the gardens around are beautiful too. It was the end of our "sightseeing" but well worth it.

Ryan, Andrew, and Tyler waiting to go on the shuttle to the mansion

The front

The back of the mansion

The garden

We reached our final destination, Williamsburg, VA in the evening and enjoyed dinner with friends and then went to the hotel pool. The National Foundation for Ectodermal Dysplasias (NFED) national conference began on Thursday. We look forward to this conference every year and plan our vacations around it. This was our 5th year attending and was excellent as every year before has been. Meeting up with old friends and getting to know new ones is the best part. This year there were 15 people at the conference that had EEC Syndrome - the one that Tyler and Grant have. It is always wonderful to meet others that experience similar things we do and of course for the kids to meet. Tyler's best buddy, Zemery, has EEC also and they were inseparable for the 3 days of the conference. It's always very sad to see them say goodbye until next year.

Tyler and Zemery (Virginia) --- best buddies

Grant and Jack (Oregon)

Ally (Virginia) and Andrew --- being shy of course

The "EEC Boys"
Tyler, Zemery (Virginia), Grant, Jack (Oregon), Nollan (California), and Zach in the back (Texas)

The "EEC Group"

Tyler, Zemery, and Ryan

Brett (Colorado), Zemery, and Tyler

Ryan, Zach (Texas), and Morgan (Virginia)

To wrap up the conference there is always a Talent Show where there are no awards given, but somewhere between 30 and 35 acts. It is always a very enjoyable time. Our close friends, the Kelso's, had both of their daughters participate also. Morgan is 8 and Ally is 4. Ally has EEC like Tyler and is almost completely blind. Their performances from the talent show are posted on YouTube then search for NFED Talent Show. Morgan sang "Tomorrow" and did an excellent job. Ally sang "Zippity Doo Dah" and her performance brought tears to everyones eyes --- it was amazing. Tyler and Ryan both participated this year also, although I did not get videos of them --- just still pictures.

Tyler playing the piano

Ryan singing "Use Me" - the song he sang for Grant's dedication at church last winter

The time we spend with friends is what we treasure most. This year was great because we were able to stay with the Kelso's for 5 days before the conference. The memories we made will be remembered forever.

DeAnn and Kristin Kelso

Terri, aka Teetay (Virginia), Susan and Paul (Texas)

Jack (Oregon), Joe (Canada), Kristin (Virginia), Chris and Grant,
Norma (Nova Scotia), Elizabeth (Joe's wife from Canada)

Andrew and Teetay (she would ask him "Whose boy is Andrew?" and he'd say, "Teetay's boy")

Chris and his 2 youngest boys --- aren't they all cute!:)

DC day 3

Pentagon tour this morning. We found out that the construction to begin building the Pentagon started on September 11. We thought that was pretty freaky. A person is not allowed to take pictures of the actual Pentagon building or inside, but the main area they had 2 spots that pictures could be taken.

Teetay, Andrew, Ryan, and Tyler

The Pentagon Memorial just opened September 11, 2008. We were able to walk and see it also. It is a beautiful memorial for all those affected by the plane that hit the Pentagon. A bench represents each person and has their name on the front of it. Very nicely done.

Ryan, Morgan, and Tyler by a bench

Andrew by a bench
(this was before he slipped and had his leg all the way to his knee go in the pool of water below the bench)

Tyler went home with Kristin and the girls, and Chris, Ryan, Andrew, Grant, and I went on to the Holocaust Museum and to Arlington Cemetery to see the "Changing of the Guard". Pictures weren't allowed at the Holocaust Museum either except in the Hall of Remembrance.

Hall of Remembrance

JFK's Grave

Tomb of the Unknown Soldier

Changing of the Guard

Leaving DC tomorrow morning and heading to Monticello on our way to Williamsburg, VA for the NFED conference. Not sure if I'll have access to a computer or not. If not, you'll hear from me next week.

Touring DC

We've had a great first few days in Washington DC. We've been up a little too late every night catching up, but spending time with friends has been great.

We started Saturday with the Rally for Ally. This was an incredible gathering to raise funds for the NFED with about 150 in attendance and raising over $13,000. We enjoyed catching up with old friends from the NFED and meeting new friends of the Kelso's. After the Rally we had a barbeque at the Matus' and ate some amazing brisket:)

I love my brother!!!

Ryan helped Morgan with a "Jungle Jam" art/craft area for the kids at the Rally

Zemery, Tyler, Ryan, and Andrew (great to see Zemery and Tyler reconnect --- they have a special bond and we consider them "EEC brothers")

Grant spilled pop (or soda here) and crawled in it, then around the black driveway --- needless to say he was given a bath before leaving there.

Baseball in the street --- you have to love cul-de-sacs --- the kids had a blast.

Here it is --- our ORANGE van (I know, it looks red but trust me, it is burnt orange!)

Sunday we went to the Mall area in DC and went to: Air and Space Museum, Museum or Natural History, Washington Monument (went up it also), World War II Memorial, Lincoln Memorial, and the Vietnam Memorial. It was a long day but honestly, the kids did great (3 adults, 6 kids . . . anyone jealous???)

Whale in the Natural History Museum

White House from the Washington Monument

World War II Memorial --- family photo opportunity

Zach, Ryan, Morgan, and Tyler

Lincoln Memorial

Today (Monday) we went to Mount Vernon and met up with Teetay (Kristin's mom) and Kristin's sister Ashli with her kids Thomas and Reagan. What an amazing view from the back grounds of the house.

Another family photo

The Girls --- Kristin, Me, Ashli, Teetay, Morgan

Grant and Reagan

The train - Andrew, Thomas, and Ally

Morgan, Ryan, Kristin, Ally, Tyler, Chris, and Grant

To the Pentagon and the Holocaust Museum tomorrow . . .

We Made It!

Huxman clan before getting on our 6:00 am flight out of Wichita

We got into the Richmond, VA airport around 1:00 instead of noon because our flight was delayed an hour in Chicago. Many of you are curious how the Huxman clan probably looked traveling through the airport . . . well, I have to say it went quite smoothly. I was pushing the big train (double) stroller with Grant and Andrew and purse on shoulder (big satchel of course), Chris carrying Andrew's booster seat, his carry on bag, and the diaper bag, and Ryan and Tyler being so grown up with their own backpacks. I say we didn't look like we were struggling too much.

They actually look like they like each other:)

Andrew with his puppy

Self portrait of Andrew and myself

Grant and Dad

The kids all did GREAT on the flights. Andrew and Grant slept on the second one from Chicago to Richmond.

We arrived at the Kelso's in our ORANGE Dodge Grand Caravan rental (yes, never quite seen this burnt orange color before but the van is nice) around 4:30. We were able to just spend the evening hanging out and relaxing.

Andrew, Ally, Tyler, Ryan, and Morgan eating dinner

Ally reading a book to Grant

It is wonderful to be able to see dear friends and spend time catching up. We look forward to the next 4 days here with the Kelso's, touring DC, and of course the Rally for Ally that we'll be attending today. More to come later . . .