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! 







1 comment:

djkamphuis said...

Sounds like you had a great trip!!!! Cedar Point in Ohio is totally awesome!!!! Oh wait you went there once with us didn't you???