TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Time to Go Home :(

Today we had to say good-bye to one of the most enjoyable weeks of our lives, and fly back to reality.  We were welcomed by a blanket of snow on the ground again and a house that was only 15 degrees.  Yay.  I miss my shorts and tank top already.

Below are some pics of the Village...and then beneath them are some pics of our adventures on the plane ride home!!! 
Tyson by our Welcome Home Sign

This was our rental van for the week :)

This is the Gingerbread House, where we ate our breakfasts and dinners most of the time



The inside of the Gingerbread House
The Ice Cream Palace
The inside of the Ice Cream Palace

Katie's Kitchen was open for lunch or we could order take-out for dinner

The carousel at the Village

Just one of the neat decorative scenes here at the Village
Amberville Train Station.  Inside the train station they had some arcade games, Wii, and air hockey and billiards

 As you can imagine, flying with 5 children is quite an interesting adventure.  We were so blessed that Make A Wish arranged for us to have a personal escort from Orlando International Airport who lead us through the Customs and Claims, and baggage claim procedure so that we could be quick and efficient.  Our escort's name was Liliana and she fell in love with Tyson and Addisyn right away.  She was also our personal escort on the return trip home.  It was great to know we were being taken care of. 


All of us with Liliana

Tyson showing off his new GKTW t-shirt.  This is a pic of Mayor Clayton.  Brian and I got some new GKTW attire too. 

As we boarded our plane for the return flight, the stewardess asked if we wanted to meet the Captain in the cockpit.  Uh, YEAH!  


Tyson meets the Captain

That's a LOT of buttons, levers, and dials!
Tyson pretending to fly the plane

Kenya got a turn in the pilot seat too
Merrick's turn
Braden's turn
Of course Brian and Addisyn would like a turn too!
As if they haven't already given us enough....

We also received a good-bye package when we checked out of GKTW.  It included coupons and vouchers for all kinds of free stuff.  A gold star that matches Tyson's star that hangs in the Castle of Miracles.  This one is going to be hung in his bedroom to remind him of his wonderful stay at GKTW.  We also got vouchers for free photos from Flytrap foto, a FREE scrapbook of our entire trip from Crops of Luv, a song written for Tyson from Songs of Love, 20% discounts from select hotels, 

AND.....

FREE admission for all 7 of us to Canada's Wonderland, African Lions Safari, Niagara's Ripley's Believe it or Not Museum, and other Clifton Hill attractions.  So exciting!!!

We could also go to Ohio's Cedar Point for free....or Darien Lake in New York for free too :)  This summer is going to be fun!  

We had an AMAZING week at GKTW!  It was such a great holiday for the kids because they had so much FUN!  It was also a great holiday for Brian because he could take his mind of his work for an entire week and focus on his family, and a fabulous holiday for me because I didn't have to meal plan or grocery shop or cook or clean.  It was an amazing, stress-free holiday.   Spending money was also included, so the kids could come with souvenirs without having to spending their own savings...and we didn't come back home to  any debt that sometimes happens when you're on holidays.

Thank-you to everyone who volunteers their time to make this place the most generous place on earth.  We are so grateful for everything you have done for us, and thank-you to Make A Wish for making it all happen!  Tyson had the time of his life and our family will never forget the many memories which were made this past week.  At first, we weren't sure when would be the best time for Tyson to have a wish fulfilled, but we can say with certainty now that meeting Spiderman and Mickey Mouse is something he will *never* forget.

Give Kids the World and Make A Wish, we are forever grateful.  

From the bottom of our hearts, THANK-YOU! 







FLORIDA - Day Seven


It's Friday.  Our last full day in Florida :(  We started the day by meeting Woody the Woodpecker and then having some breakfast at the Gingerbread House.  
Our final theme park for the holiday was Epcot.  There were really only a few things that interested us there, so we thought if there was time left we'd go back to Magic Kingdom  since it was so busy on Monday and we missed out on a few things we'd really wanted to see.  We enjoyed Soarin' (a really cool hang-gliding ride,) Spaceship Earth, Mission Space, and Tyson really enjoyed Turtle Talk with Crush and the Finding Nemo ride.
Epcot was definitely not our favorite place and the kids were bored so we decided to take the Monorail and hit up Magic Kingdom again.  We enjoyed the Big Thunder Mountain Railroad, the Magic Carpets, Pirates of the Caribbean, It's a Small World, the Haunted Mansion.  We also received first-in-line treatment to get Winnie the Pooh and Tigger's autographs :)  Then Brian took the kids on the Tomorrowland Speedway two more times (a favorite for our family!) and we tried  to do Space Mountain but the ride broke down so we missed out on that one. 

I love Kenya's face on this picture!  With the Magic Button giving us Fast Passes to all the rides, the kids enjoyed this Speedway over and over. 
Tyson and Addisyn waiting in the stroller while Brian and the older 3 went through the Haunted House


When we had enough of Magic Kingdom, we headed back to the Village where a Pirates and Princesses Party was already in session.  I'll tell ya, this place really knows how to throw a party!  

Aaaarrrrr!!

Princess Kenya

Braden and Merrick had a great time too!
The princesses were given tiaras and flowers, and had their face done-up in make-up.  The pirates received eye patches, head scarves, and swords.  Then they all got up on the Ship of Dreams stage to show off their new outfits.  The music is loud as we all dance without a care in the world.  As if none of the children here are dying of cancer, or living with broken hearts, or breathing through tracheotomy tubes.  As if their physical ailments no longer exist, as if hospitals are not their second homes.  I look around the Ship of Dreams and see mothers watching their children with tears in their eyes.  I want to hug them and say, "I know."  I know what they're feeling.  As we watch our children have the time of their life, we shed tears of joy and tears of sadness.  Joy because our kids are just so so so happy.  And sadness because we our week is coming to a close, and we wish every week of their lives could be like this one magical week. 









FLORIDA - Day Six

Thursday, February 21, 2013.  A day we all looked forward to eagerly.  This was the day we were planning to go to Universal Studios: Islands of Adventures to meet Spiderman, spend some time in the Wizarding World of Harry Potter, and Belle from Beauty and the Beast was coming to the Village.

We began the day bright and early, even woke all the kids so we could get out the door on time.  We knew that we absolutely could spend an entire day at Islands of Adventure, so we wanted to get an early start.  First we met Goofy and Mickey Mouse (again) at 8am in the Castle of Miracles in the Village.  Then we hunted around because we had heard Belle from Beauty and the Beast would be walking around.  Kenya and I searched for her and we found her just outside Julie's Safari Theater.  Kenya was thrilled to finally get to meet a princess!  

Belle talked Kenya's ear off...

The 3 Princesses

This entire time we've been waiting for Tyson's wish trip, Tyson has insisted that he was NOT meeting any princesses.  He talked about "princess germs" and princesses being "yucky."  Of course, his dislike for princesses made us tease him even more and we talked about how we were going to ask the princesses to smother him with kisses.  He would always give us a reaction when we talked about it.  Well today, Tyson met his first princess.  It took some convincing and he protested quite a bit but Brian just grabbed him and called all the boys in for a picture, and it wasn't long before Belle had him smiling.  


Tyson warming up to Belle

Next we had breakfast at the Gingerbread House and we were on the road by 9:30am to Universal.  The first stop of the day was to the Wizarding World of Harry Potter.  We had heard that if you aren't in the line-ups by early afternoon, they sometimes would close Harry Potter land down earlier than closing because of the long line-ups.  So we decided to walk to the far end of Islands of Adventure and start there.  Brian, Braden and Merrick began the day with a ride on the Dragon Challenge, a high speed roller coaster ride.  Right up Braden and Merrick's alley.  Next I took Braden and Merrick in to see an interactive wand experience where they both picked out a wand.  (Or rather, the wand picked the wizard;)  Braden bought Mad-Eye Moody's wand and Merrick bought Harry Potter's wand and then they both picked out a small gift for some friends.  Next I took 4 kids to the Flight of the Hippogriff (which Tyson did NOT like) and then the 3 oldest did Harry Potter and the Forbidden Journey.  It was a great time in Harry Potter world.

Our next stop was to SuperHero Island where Tyson got changed into his Spiderman outfit, and then he finally got to meet his hero Spiderman.  It was so great to just flash our "Magic Button" and the staff at Universal bent over backwards to bring Spiderman to us.  There was quite a line-up of children waiting to see him, but because Tyson is a wish child, we got first priority and Spiderman met Tyson first.  Tyson didn't smile quite as big with Spiderman as he did with Mickey Mouse, but I think it was because he was just a little bit scared.  Spiderman was happy to see him and called Tyson his "mini-me" because of the outfit, then he signed his autograph book, posed for some pictures, and we bought a few more Spiderman things.  Another one of the MANY perks of being a wish family is each theme park gave us a free picture of our choosing.  We received a free 5X7 at Seaworld and a free 8X10 at Universal.  At Disney, we had a photo card which they loaded all our pics onto, and then Give Kids the World has donated a free CD with ALL our Disney pics to us.  We just have to go online to order as many pics as we want, enter the promo code from GKTW, and then we have a CD with all our pics.  This includes any pics that were taken on the rides, while our kids were driving the race cars in the Tomorrowland Speedway, or group pics taken by a Disney photographer.  I can't wait to see what kinds of pics they took of us.  
Chatting it up with Spiderman

Spiderman was very cooperative!

This is the free 8X10 we received
Braden and Merrick then went on the Incredible Hulk roller coaster and loved every minute of it.  After meeting Spiderman, a staff member from Universal told us that we had the opportunity to enter the front of the line with any of the other Marvel Superheroes too.  But because Tyson doesn't really know the Incredible Hulk or Captain America or IronMan, and because Kenya really hadn't enjoyed any rides or anything yet, we decided to pass on this opportunity and continue on to Seuss Landing.  

Seuss Landing was a ton of fun too!  The younger kids really enjoyed the rides and we also saw a Cat in the Hat show.  Without hesitation, a staff member saw Tyson's button and told me we could meet all the characters in the show and that she would personally guide us through to the front of every line-up.  So our kids got autographs from the Cat in the Hat, The Grinch, The Lorax, Thing One and Thing Two, and Sam I Am.  The staff member made sure that nobody else budded in line in front of us and when other kids went out of turn to hug one of the characters while Tyson and Kenya were talking with them, the staff member backed the other kids away, asking them to give us some time.  It was like having our own personal body guard at the theme parks!  What a wonderful experience that Tyson could meet all these characters and never have to wait in line.

The Cat in the Hat

Thing 1 and Thing 2
Our older kids never had to wait in line for the bigger rides either (at any of the theme parks.)  As a result, we were often able to finish up at the theme parks by early afternoon. We were finished with Islands of Adventure by 3pm.  We had loosely planned to go to Epcot as well if there was time left in the day since we knew there were only a couple of things we wanted to see/do there.  But when we asked the kids what they wanted to do, they all said they wanted to go back to the Village and hit the pool.  (It was HOT!)  So we enjoyed the rest of the afternoon swimming and eating ice cream.

After dinner we went to the Castle of Miracles to write Tyson's name on his star so that the Star Fairy can come overnight and hang his star on the ceiling of the Castle of Miracles.  Each star on the castle ceiling represents one wish child who has stayed at GKTW.  There are *thousands* of stars on this castle ceiling, and thousands of families who have been blessed by Give Kids the World.

Helping Tyson write his name on his star.


See the thousands of gold stars on the ceiling? That's not even half of them!  There are so many more in the tower and along the walls. 

Every evening at the Village there are themed parties.  Thursday evening was Winter Wonderland.  There was Christmas carolling, snow cone making, cookie decorating, and of course SNOW!  Then afterwards the kids all had a turn meeting Santa Claus and after more pictures were taken of us with Santa, the kids all got a present!  Braden received a Lego, Merrick received the Game of Life Boardgame, Kenya received a special doll, Tyson received a football, and Addisyn received a Weebles toy.
Braden's decorated cookie
One of the many volunteers that makes this Village so special helping Kenya build a tower.
Santa's Helper

This place is truly amazing and they sure know how to spoil us!  The gifts they received tonight are on top of the *daily* gifts our kids receive.  One day it was the Candyland board game (a special "Give Kids the World edition.")  Another day it was a Monopoly game, another day it was insulated travel mugs for all the kids.  We didn't realize we would receive so many!  We thought that we'd receive all the gifts we could handle after arriving at GKTW on the first day; the dining room table was full of gifts: board games, princess movies, candy, chocolate, caramel popcorn, stuffed animals, plus Tyson received a Mickey Mouse on arrival while the other kids got a Shamu stuffed whale.  Also on Wednesday after horseback riding, they all received their own cow boy hat! 

Give Kids the World is a *MAGICAL* place and we are so blessed to be part of the GKTW family.  We feel so special and so blessed.




FLORIDA - DAY FIVE

We began the day with some horseback riding.  All the kids had fun.

All the kids received a cowboy hat to take home

Next stop was Hollywood Studios.  This was a scene from the Extreme Stunt Show, a demonstration of how Hollywood movies film their dangerous stunts.  It was fast-paced and loud, with guns firing and motorcycles screeching...Tyson was amazed, he loved it!

Mayor Clayton came to visit tonight to tuck our kids into bed

First Kenya gets tucked in


Then Tyson.  I love the adoring look on his face.  He LOVED the characters here at the Village
Addisyn gets her cheeks rubbed

Even the boys get their pillows fluffed.



We are all super excited for tomorrow's outing.  First, Kenya gets to meet Belle at the Castle of Miracles here in the Village.  Then we are going to Universal Studios for the most anticipated event for Tyson.  He gest to meet Spiderman at Universal Studios!!! Braden and Merrick are hoping to spend a good part of the day at the Wizarding World of Harry Potter.  They've been looking forward to this the most out of everything.  It's all they've talked about.  And I can't wait to see the look on Tyson's face when he meets Spiderman in person. Kenya is thrilled to meet Belle because we didn't get to see the princesses at Magic Kingdom, except for during the evening parade.  The line-up to meet the princesses was about 3 hours long...

FLORIDA - Day Four

 We spent Tuesday enjoying all the Village has to offer.  We began the day by visiting the Ice Cream Parlour and having ice cream for breakfast.  Oh yeah, baby.  A few sore tummies later...and we're off to the playground.  Next the pool.  A quick lunch ordered in from Katie's Kitchen, and then nap time.  Addisyn, Tyson, and Kenya all needed a long nap if we want to enjoy Mayor Clayton's Birthday Bash tonight.  Brian took Braden and Merrick out mini-golfing while I spent the afternoon behind the computer blogging. I don't want to forget this trip and all the little details.  We are having the time of our lives.  At Give Kids the World, they really DO give kids the world.  We all feel so so special.
 
Our sweetie Addi enjoying the swings at Matthew's Boundless Playground
Kenya on the slide
Merrick playing 'Grounders'
Braden being a putz LOL




Kenya soaking in the sun's rays

All snug as a bug after a swim in the pool

Braden and Merrick beating each other up in the water

Brian took Braden and Merrick out to Tampa Bay to see the Lightning try to beat the Maple Leafs tonight.  Tickets here in Florida are way cheaper than they are in Toronto, so I totally understand their need to see their mighty Leafs play tonight.  They left at about 5pm and I had dinner with the youngest three, and then we attended Mayor Clayton's Birthday Bash.  The kids had a lot of fun, and so did I!
Meeting Patches the Dog during our dinner at The Gingerbread House

Ms Merry, the  Mayor's wife, is embarrassed because Tyson kissed her on the cheek.

Tyson with Patches again

Some face painting

Ms Merry was enamored with Addisyn

Mayor Clayton signing Kenya and Tyson's autograph books

No party is complete without some serious dancing!