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 Two

We started the day by hopping into our van and heading to Orlando for the 10am service at Lake Sherwood Presbyterian Church. We were a few minutes late because we had locked ourselves out of our villa.  Heehee, good times :)
We spent the morning at the church and were able to give Tyson another nebulizer mask in the nursery after the service was over.  He's still coughing.  He's still in good spirits (how can he NOT be in good spirits in the warm south air?) and his O2 sats are stable, so we're not worried about his cough.  



After church we went to Seaworld (yes, on Sunday!)  It was an amazing experience.   Tyson was smiling and happy the entire day and he made it very clear to us that he was having a VERY good time.  He bounced around all afternoon saying, “This is AWESOME!”  After watching the Shamu killer whale show, he announced, “Dad, this place is AWESOME!”  We are so happy that he is having the time of his life. There is nothing better than seeing your children happy.

Momma whale and Baby whale kissing

I can't get over how big these creatures are, and yet they still manage to fly themselves so high in the air
The dolphins showing off their stuff


Have I ever mentioned how much Tyson loves rides?  We just knew that wishing for a trip to Disneyworld would be the best wish for Tyson.  Our family is SO GLAD that he chose Disney World instead of Sidney Crosby...no offense Sidney ;)


The Flying Fiddler Crab ride at Seaworld



 It was a cool day at SeaWorld, about 19 degrees at best.  Mostly everyone from Florida was walking around in hatts, mitts and scarves.  They did look at us a little crazy in our shorts and sweaters, but we considered it to be a nice day.  It felt a lot like a day late in September.  I did however pull out Addi's winter hat and mitts because she was a little chilly as the sun went down.  We stayed at SeaWorld till the end of the day and the came home for a delicious dinner at the Gingerbread House. 

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