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

This blog is about our nine 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!


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...

1 comment:

Give Kids The World said...

Thank you for sharing your magical experience with us! We can't wait to see the pictures of Tyson and Spiderman. How exciting!