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!

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.




No comments: