A Tale of Two Cities

Wednesday was an extremely big day for us!  We had a group breakfast and then a little down time in the morning after we checked out of our room and got our luggage situated.  We took a short walk and let Jayla run and play with her friends at Freedom Plaza.

Famous presidential portrait of JFK, the only one done after a president's death

White House Dining Room

After lunch, we all reconvened for our White House tour.  The group walked over and went through initial security.  I figured we'd be going through the traditional tour, but boy was I wrong!  We were classified as guests of the President and as such got much more open access.  Instead of the regular tour route, we were given open access to wander through the private dining room and the Red, Green and Blue rooms.  We were allowed to take pictures, touch things and even sit on the furniture.  I about had a heart attack the first time Jayla sat down!

Jayla taking a break in the Blue Room

Once we'd checked everything out, we all went into the East Room.  This is the room where the President makes his public statements to the country... you know, he walks down the long hallway and comes to the podium.  It was pretty amazing to be standing right there.  They placed all the kids in chairs and family on risers behind them.  A secret service agent talked to us for awhile and answered the kids' questions.  After that, we received our first visitor, Bo the 1st Dog.  Bo is pretty impressive.  He trotted around the room so all the kids could pat him and then placed himself for an official picture.  After he left, it was just a short wait for President Obama to come.  It was really neat to watch him stroll down that long red carpet lined hallway and enter the room.  Regardless of your political inclinations, there's no denying that he is a man with a great deal of charisma.  He was charming and flashed us all the biggest toothy smiles.  He spoke briefly and made a point of shaking each child's hand and many of the parents as well.  He then posed for official pictures and accepted a plaque from the people at CMN.  In no time at all it was over and he was sauntering down the same hallway to get back to work.... He indicated that he'd like to go with us to Disney World but he had a few things he needed to take care of :-)  I asked Jayla what surprised her the most about the President.  She said excitedly that he had a pimple right on his cheek and that she didn't know presidents could get pimples.  I told her I thought it was a mole, but that yes, even presidents can get pimples!

A secret service agent answered questions in the East Room

After our presidential visit (by the way, the White House hasn't provided the pictures yet and we weren't allowed to take pictures), we headed back to the hotel where we had a quick snack and then boarded buses for the airport.  It was a bit of a drive, and I think we all got a short nap which was good because there was lots more fun in store for us!

Snapped a quick pic of Jason and Jayla as we were leaving!

 Our flight from Washington DC to Orlando was like nothing I've ever experienced.  While I still have no desire to be famous, it did make me wish I was really rich and could travel like this all the time!  We had a chartered flight, so we never went into the actual airport.  We didn't have to lug our luggage around or go through security.  Our bus pulled up right next to the tarmak where a crowd of Delta employees were waiting to greet us.  We completed a very basic security screening and were welcomed onboard.  Jayla was excited because the plane was really big and had tvs in the back of the seats.  As we departed Washington DC, the fire department at the airport gave us a water canon salute.  Apparently these are quite rare and generally only done when a senior pilot is retiring.  Basically, they bring out fire trucks and shoot huge arches of water over the plane as it takes off.  We were even given a salute upon landing in Orlando!

Water canon salute

We had a wonderful flight, and the people at Delta worked so hard to make it special.  We were served a delicious dinner on the flight which was great as we were all getting hungry!  They also gave the kids coloring sheets, aviation wings and candy.

Delta greeted us at the airport when we arrived in Orlando

Jayla was a little overwhelmed by the crowd when
we arrived at the Coronado Springs

It was getting late, but we were all so excited to arrive in Orlando.  When we departed the plane, we were once again greeted by a crowd of Delta employees who cheered and waved signs for us.  They made us feel very special!  We boarded buses and headed for the Coronado Springs.  Jayla was so excited by all the Disney-themed billboards she saw along the way.  When the bus pulled up in front of the hotel, we were greeted by a huge, cheering crowd.  Everyone from CMN's Celebration were there with signs!  Once we entered the hotel, they had gift bags and Disney pins for all the kids.  They'd also set up all kinds of games for the kids to play and fun things to do as well as snacks.  Jayla had so much fun!  She was also really excited to see her picture displayed on the big video screen.

There were LOTS of people!

Jayla had fun at the welcome party and got
a balloon sword and chef's hat!

It didn't turn out great, but here's Jayla with her screen.
It rotated through all the kids.

Finally, it was time to settle into our room.  It was a bit of a hike, but we finally found it!  We settled in to do therapy and go to bed.  And then panic struck.  As we got set up for therapy, we discovered that the nebulizer we'd brought had been damaged at some point and no longer worked.  Without it, neither child could do therapy.  While it was already nearly 11:00, I called our good friends at Accurate Rx who are truly amazing.  Kirsten set to work trying to find a place to get a replacement nebulizer.  In the meantime, we did our best with the percussive portion of therapy and headed to bed.  We would have to figure out a nebulizer solution tomorrow.  Plus, tomorrow was our free day in the park so we needed our rest!

A Free Day in the City

Jayla at the WWII memorial with the Lincoln memorial in the background.

Tuesday was our last full day in Washington DC and was free for us to do as we wished.  While we were tired from our late night at the Air & Space Museum and the weather was questionable at best, we decided we wanted to make the most of our day - but do it smart.  That meant getting an early start to try to beat the rain.  It also meant relying on taxis instead of trying to walk everywhere.  That definitely saved us!

After a quick bite to eat - Jayla has discovered she loves the blueberry muffins at Starbucks - we headed out, catching a cab to the WWII memorial.  It wasn't a far drive and we could easily have walked it, but it was nice to save our energy.  This drop off location also gave us a chance to see the Washington Monument up close as it was right across the street.

WWII Memorial

We spent quite awhile checking out the WWII memorial.  It wasn't there the last time I was in DC, and it's a beautiful monument with lots of open space and beautiful water features.  Jason particularly enjoyed the monument and took the opportunity to tell Jayla about his grandfather that fought in the Pacific.  I also snuck in a little about my grandfathers who also fought in the war :-)

Dylan finally woke up to check out the WWII memorial

After spending some time at the WWII memorial, we took the short walk to the Vietnam Memorial.  We told Jayla all about how both of her grandfathers had served in the army during the war and how my father had been in Vietnam.  I really like the Vietnam Memorial because of its simplicity and the fact that it actually lists the names of those that gave their life in the war.  It makes it a much more personal tribute.

Vietnam Memorial

Jayla at the Lincoln Memorial

After the Vietnam Memorial, it was just a bit further to get to the Lincoln Memorial which was our primary destination.  Jayla has learned a lot about President Lincoln, so I felt certain she would be impressed by his huge statue.  In typical Jayla fashion, she liked it but wasn't as awe struck as I'd hoped.  We wandered around the Lincoln Memorial for awhile, but Jayla really wanted to go to Ford Theatre.  As we prepared to leave, the skies opened up and it began to pour.  Because my mother must have been a boy scout in a previous life, she had ponchos for everyone.  We got ourselves ready for a rainy trek to our next destination, but the rain had largely stopped by the time we were ready!  The rest of the afternoon just had a light sprinkling of rain, so it didn't slow us down too much.

Jayla was NOT happy about the ponchos.

We had one more stop before heading back towards the hotel and that was the Einstein statue.  It's tucked away just off the mall, but it's a really fun statue because you're allowed to crawl on it.  Unfortunately, it was wet and a little slippery from the rain, but we checked it out anyway.

Jason and Jayla with Albert

Jason had a few ideas to share with Mr. Einstein.

I opted to just share some love!

Jayla's "bad girl" pose with John Wilkes Booth

From there, we caught another cab to Ford's Theatre which took us back close to our hotel as well.  The actual theatre was closed as there was a rehearsal in progress, but we were able to visit the museum in the basement which was interesting.  It provided us an opportunity to talk to Jayla a little bit about the Civil War and slavery.  She was very attentive and agreed that it wasn't fair for one person to get to own someone else.    She enjoyed the theatre but was a bit upset as it wasn't what she expected.  She was hoping for a good movie and some popcorn!  We caught a quick peek at the house across the street from the theatre where Lincoln died and then headed back to the hotel.

I can't believe I originally forgot to mention that I got to visit the Chico's gifting suite.  So fun!  Chico's is a national sponsor of the Champions program and they had a room all set up to treat the mom's in the group.  We were given the opportunity to choose items from a wonderful assortment of jewelry, scarves and belts.  It was so much fun to be able to pick some special - and guilt-free!

The day went very quickly, and we were exhausted so we went with our old stand-by, McDonalds, for dinner and then settled in at the hotel.  After our night routine was complete and mom and the kids were settled into bed, Jason and I took the opportunity to go for a walk.  We covered lots of ground, walking through the downtown area, strolling along Freedom Plaza and then wandering back over to the White House.  It was really nice to have a little time with him although it made for a late night and tired legs!

A Day in the City

Mark Wills singing "Don't Laugh at Me"

We hit the ground running on Monday with a big day in DC.  We started the morning with a group breakfast, so we had a chance to meet some more Champion families.  We enjoyed having breakfast with the family from New Hampshire.  We were treated to a musical performance by our new friend, Mark, who sang "Don't Laugh at Me".  That song gets me every time, but it was even more moving given the company we were in.

Jayla and Mark showing their teeth!

After breakfast, we all boarded buses and headed to the Capitol.  The kids got their first group photo in front of the capitol... boy did that take awhile!  They also each got individual shots.  After the photos, we all headed to the Dirksen Senate Building.  Once there, we enjoyed a box lunch and official welcome.  We spent some time getting to know new friends from Mississippi.  Dylan shared his opinion of politics by having a massive blow-out diaper all over his Dad.  Fortunately, Jason had brought an extra pair of pants, so we were back up and running in no time.  Massive diapers would, however, remain a theme throughout the week!  A representative from Blaine Luetkemeyer's office came down to greet us and apologize that Mr. Luetkemeyer would be unavailable to meet us.  After lunch, we visited the impressive office of Senator McCaskill.  She also wasn't in town as Senate wasn't in session, but someone from her office took us over to the capitol and got us set up for a tour.  We even got to ride the underground tram that the senators use to travel from the capitol to their offices!

Champions at the Capitol

Dylan was there too, but he was asleep!

Jayla striking a pose in front of the statue of Freedom

The capitol tour was very impressive.  Jayla enjoyed it for awhile but lost interest by the end.  She was very impressed with the statue of Freedom as well as the statue of Helen Keller.  She learned all about braille.  She also really liked the point in the catacombs of the capitol that is considered the exact center of the city and the point at which all roads intersect.  We caught a taxi back to the hotel after our tour which was very exciting to Jayla as well.

Jayla standing at the intersecting point and absolute center of Washington DC

"Reading" the braille on The Helen Keller statue

After quickly freshening up and doing therapy, we were off to our official welcome reception at the Smithsonian's Air & Space Museum.  What a treat!  We had open access to the whole museum after hours, so it was just our group.  There were lots of great snacks, and we were allowed to wander through the museum at our leisure.  It was very important to Jayla to check out the gift shop (another reemerging theme throughout the week!).  She picked out a toy Discovery rocket which she loves.  She and Jason had a wonderful time checking out all the airplanes and rockets throughout the museum.  It was really fun to watch them be so excited!  Jason especially enjoyed the museum as there was lots of information about the battles his grandfather was in during WWII.

Jason and Jayla at the Air & Space Museum

It was a late night by the time we made it back to the hotel, but a truly wonderful day.  We had so much fun exploring and learning today.  We had to catch some quick shut-eye in preparation for an action packed free day on Tuesday!

Here We Go!

We have been planning and preparing for our Champion trip for so long, and were so excited when it was finally time.  We knew it was going to be a great week, but we really didn't know what to expect.  In an effort to make it as stress-free and fun as possible, we decided to stay in St. Louis Saturday night in preparation of our flight Sunday morning.  We had a nice time at the hotel and hung out at the pool for awhile.  I'd like to say we got a good night's sleep, but I think we were all a little too excited and nervous!

We got up bright and early Sunday morning and headed to the airport.  Air travel with two kids with special needs is a bit of a challenge as we are completely incapable of traveling light!  It was quite the accomplishment just to get all the luggage to the airport and checked.  Jayla was fascinated by the whole process but worried that we were going to get in trouble for bringing her nebulizer as the security officers had to hand inspect our bags.

Jason was nervous flying, but Jayla did great.  Dylan slept his entire first flight and most of the second, so he is an excellent air traveller!  The flight from St. Louis to Atlanta was pretty uneventful.  Once we made it to Atlanta and switched planes, I felt much more relaxed.  The flight attendants in Atlanta were prepared for the Champion program and welcomed Jayla when we arrived at the gate.  They gave her a pair of wings which she was very excited about.  Throughout the entire trip, the people at Delta were absolutely amazing... they took such good care of us!

Arriving at the Washington DC airport

Once we arrived in Washington DC, the festivities began in full force.  There was a whole group of Delta employees waiting for us at the gate.  They all cheered and hollered for the four Champion kids that were on the flight.  They then escorted us to a huge balloon arch where we all got our pictures taken.  We definitely got lots of attention from airport passengers as the folks at Delta cheered all the way through the airport!  Once we'd had our welcome picture taken, we were taken to claim our luggage.  The amazing staff at CMN were waiting for us there and helped us claim and load our luggage before taking us to the J.W. Marriott, our home away from home.  We got all checked in and greeted and then went up to our rooms which were AMAZING.

Once settled, we ventured out for food.  Jayla had heard mention of McDonalds on the way in, so our first meal in DC was an old standby.  It turned out to be a great choice because we met a new friend on the way back to the hotel.  This complete stranger - a man in a baseball hat, shorts, t-shirt and flip flops came running towards us from across the street.  He was so excited that we were there and that Jayla was a Champion.  He quickly introduced himself as Mark Wills and asked Jayla what she most wanted to see in DC.  She quickly responded that she wanted to meet the first lady which Mark wasn't sure he could arrange for her :-).  She then said she'd like to see the White House.  Without hesitation, Mark says it's not far and he'll take us.  We're still not sure who this guy is, but he seems legit so we went with him to the White House.  We had a great time getting to know him and his friend Michael on the way and then met a secret service agent that is also a friend of Mark's when we got to the White House.

Once back in the room, we called home and told everyone about our new friend, Mark.  Turns out he's a country music star, and everyone at home was very excited.  We just thought he was a super-nice guy!

The whole family at the White House.  You'll see lots more pictures of Dylan asleep... that's mostly what he did  :-)

After our quick trip to the White House, we rushed back to the hotel for our opening reception.  We met some very nice people from Delta and got our official Champions backpack... it had all kinds of good stuff in it including ACE Pez dispensers!!  We also got to meet all the other Champion families for the first time.  It was a busy, fun day with the promise of so much more to come!

New friends from Delta!  

We loved getting to meet new Champion friends!

A Week to Remember

Our family has just returned from a truly amazing week in which we did so much, made so many great friends and had such a wonderful time as a family!  It's a little overwhelming to think of all we did last week... from our warm welcome to Washington DC, a whirlwind visit to the nation's monuments, meeting the President and first dog and then boarding a plane to Orlando for more adventures there!  In an effort to give a full accounting of all our amazing experiences, I've decided to blog about one day of our trip each day.  That means you'll all be reading about our trip about a week late, but it will allow us to share lots of pictures and stories.  Trust me... it'll be worth it!

Fairytale Farewell

Yesterday was an extremely exciting day for Jayla, her official send-off for the Champion program!  Honoring the princess within her, the theme was a Fairytale Farewell.  Grams fixed up her beautiful Cinderella dress and took her to get her hair done in preparation of her big event.


We arrived at the hospital for a horse and carriage ride around the surrounding area before Jayla made her big debut at the hospital.  There waiting for her were lots of her friends and family.  All the people she loves from the hospital were there too -- some of her favorite nurses, Child Life specialists, the CF Care team and even the Chairman of the Child Health Department.  In addition, lots of family members and family friends were on hand including Jan and Jay and Kirsten from Accurate Rx.  There were also lots of fellow CMN supporters including the Sims family and Jayla's good friends Annie and Mahir from Dance Marathon.


After arriving by horse and carriage, Jayla made her grand entrance along the red carpet as everyone blew bubbles and cheered.  We were then treated to a musical performance by the PACE Youth Theatrical Group and lots of fabulous pink treats.  It was such a special day... Jayla was truly made to feel like a princess.  Now she's ready for her big trip!

Jayla arriving in her carriage... boy did we get a lot of attention going down the street!

Walking the red carpet

 

Jayla loved all the bubbles!

It was so much fun to see her so excited!

There were LOTS of princesses and Disney characters on hand!

Jayla loves Annie from Dance Marathon!

Mahir and Jayla are always fast friends.  The students involved with Dance Marathon are so amazing!

Jayla and Helen (from CMN) are like two peas in a pod.  They were busy singing like Ariel and then posing like fashion models (BTW, Jayla's not mad... that's her model face!)

Jayla's CF team were on hand to send her off including her primary pulmonologist, Dr. Ner; the program director, Dr. Acton; her dietician, Beth; and her social worker, Kecia!

Jayla snapped this candid of Dr. Ner and Dr. Koenig sporting his pink boa!

  

Travel Ready!

Yesterday was an exciting day in our household!  A FedEx box arrived with all kinds of Champion goodies.  Jayla now has a full wardrobe of Champion t-shirts for her trip!  We're still pulling together bottoms, socks, shoes and hairbows :-)  We also got a more detailed agenda for our trip, and we're really getting excited.

The letter went to the school today to ask that she be excused, and I've already begun the laborious task of developing the dreaded packing list.  I had a mild panic attack earlier this week after I made a list of all the medical equipment and prescriptions we'll be travelling with.  It's a bit overwhelming, but I'm sure we'll be able to make it all fit!  I'm anxious to do a little more work pulling it together so I can feel like we're organized.  In addition to the medical issues, I've never traveled by plane with an infant... packing diapers and bottles is quite the endeavor as well.  We're used to traveling by car where you'd just stop at the local Walmart and stock up!  The good news is that the diapers will get used up, making room for souvenirs!

As we're preparing for our departure, we're also gearing up for the hospital's send-off event next Monday.  They are hosting a reception in Jayla's honor specifically for the hospital staff to attend.  The theme is a "fairytale farewell", so Jayla will be arriving in her Cinderella dress by horse and carriage.  A local performing group is going to sing princess songs.  We're so excited.  Pictures and details will be coming soon!