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 Three



On Monday we started the day by having a personal "meet and greet" with Mickey Mouse.  Here at Give Kids the World, the Disney characters come to visit the kids at Julie's Safari Theater or the Castle or Miracles, so there is absolutely no need to stand in the long lines at the Disney Parks.  This is part of the wish process for all the wish kids.  We got to meet Goofy and Mickey Mouse on Monday.  

When Tyson met Mickey Mouse, he was grinning from ear to ear.  His smile was radiant, it brought tears to both Brian’s and my eyes.  He had such a blast.  We have some of this experience on video.  A volunteer at GKTW asked if we wanted him to video it for us so we could enjoy the moment.  They also had a photographer there snapping pics too, which is a very good thing since we realized that we had left our camera battery in the charger back at the villa!  So we won't have pics of Tyson and Mickey until we get the CD from them when we checkout.  I can't wait for you all to see the huge smile on Tyson's face when he met Mickey Mouse. 
                                                                                                                                        
This is one of the displays at Matthew's Boundless Playground.  You can also see a villa in the background, very bright and colourful.
That is what is so great about this place – the volunteers.  1,500 people volunteer here every week!  Most of them are retired men and women or teenaged students.  All of them are here because they love kids, they desire to help,  and because they care about our family.  They are so helpful, offering to take pics and videos of our family’s experience so that we can just live in the moment and enjoy it through our own eyes instead of through the camera lens.  They cook us breakfast, lunch and dinner, serve the meals to us, clean up after us, and they don’t even let me carry a tray to our table.  Mealtimes have never been so easy in my life.  With 5 kids to attend to all day every day, it gets super busy, we all know that.  But here, they go above and beyond to make our lives easier.    We can order in, take out, or sit in the restaurants to eat.  We can eat ice cream for breakfast, lunch and supper if we want to!  We can order pizza at 10pm if we have the munchies, or a dessert from the Cookie Cart after hours.  (I will also need to answer to Jillian once we get back from the holiday ;)

Not only does GKTW provide us with accommodations and meals, they provide us with theme park entertainment, and our kids get gifts every single day.  It’s like Christmas every day here at GKTW!  They told us we’d need to pack along an extra suitcase to fit all our gifts, but I think we should have packed 5 empty suitcases.  I didn’t realize we would receive so much! 
  
Give Kids the World is set up like the game board CandyLand.  The kids even get to play a life-sized game of CandyLand on Saturday evenings.  The houses are painted in bright colours, the playground is decorated with game pieces from the CandyLand game.  The mayor of the Village is Mayor Clayton, a giant bunny and his side-kick Ms. Merry.  I will post more pics of them later in the week. 

 After the exciting meet and greet with Mickey Mouse and Goofy,  we went to Magic Kingdom.  I didn’t realize that Presidents’ Day was a statutory holiday…I had googled it weeks ago and discovered that all the major stores were still open, so I figured it would be fine to go to Magic Kingdom on Monday..... IT. WAS. SO. BUSY.  YOU. CAN’T. EVEN. IMAGINE.

Enjoying the Tomorrowland Speedaway...over and over and over again.

The good news is that Tyson has a “Magic Button” which gives us a fast pass to all the rides.  We never wait in lines.  Never.  We got to enjoy soooo much more of Magic Kingdom in one day than we imagined was possible, especially considering how busy it was.  Magic Kingdom also has a “Disney Wish Lounge” that is available for wish families to retreat to for some quiet time.  And boy did we need it!  We spent over an hour there this afternoon so that we could let Addisyn out of the stroller to crawl around, give Tyson another mask, and get out of the hot sun.  It was so nice to have access to such a great room for us all to re-group and unwind.  We stayed till the end of the night, even Addisyn behaved relatively well despite her lack of sleep.  Brian has very sore shoulders from carrying either Addisyn in the hiker carrier, or Tyson on his shoulders.  We did get free stroller rental but for some reason, both of them didn’t enjoy sitting in it, and Addisyn certainly couldn’t sleep in it.   For our next theme park we will bring our umbrella stroller as well as having the stroller rental and the hiker carrier.  At least Addi can sleep in the stroller, or maybe Tyson if he needs to.

A few weeks ago we had made dinner reservations at The Plaza Restaurant at Magic Kingdom, because we knew we’d want to stay to see the parade and fireworks.  Although dinner was totally overpriced, the food was good, it was good to get off the busy streets,  and the kids enjoyed the best milkshakes in all of Florida.

Goofing off after dinner
Brian and Tyson dancing with Chip (or is it Dale?)
Kenya enjoys some music and dancing

After dinner the kids enjoyed some music and dancing, some more rides, and Brian and the 4 oldest went on the Speedway three times in a row (LOVE Tyson’s Magic Button!) while I shopped with Addisyn carefully picking out a few souvenirs.  Next came Disney’s Electrical Parade and some fireworks.  We ended the day at just after 10pm and the kids absolutely crashed on the way home.  Tyson and Addisyn didn’t even wake up when we picked them up and tucked them into bed.


The castle all lit up at night
Braden took these pics with my camera.  I think he did a great job!
Puff the Magic Dragon

Thumbelina

Braden loved this one, it was of America's national bird the eagle. 


Tuesday and Wednesday we plan to spend the day around the Village.  There is so much to see and do here that we haven’t experienced yet.  We will definitely need to sleep in tomorrow morning.  We may do some souvenir shopping on Tuesday afternoon, maybe Brian and the boys will catch the Leafs game and Wednesday we plan to be at the village all day too. After 3 days of being on the go, it's time for some down time and some good long naps for Addisyn. 

1 comment:

Anonymous said...

Incredible!!! Is all I can say!
Thanks for keeping your blog so up to date - the kids and I are really enjoying the updates!
k