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 One



Tyson’s Wish Trip to Walt Disney World, Florida February 16-23, 2013

"Only one more sleep, right Dad?"

Our trip to Disney began early Saturday morning, February 16, 2013.  Our flight was scheduled to leave at 6:25am from Pearson International Airport in Toronto and the Airport Limo was scheduled to come pick us up from our home at 2:30am.  That is incredibly early for a family with 5 children!  We tucked the three youngest in bed early-ish the night before, so they could be as well rested as possible.  Brian and I stayed up till midnight with Braden and Merrick watching ‘Harry Potter and the Chamber of Secrets.’  We knew that trying to get to bed early would be a lost cause, so we decided to kill some time by staying up late watching movies.  When our limo arrived, we saw that it wasn't really a limo but a very fancy SUV, still beautiful but a little smaller than we'd imagined.  It had just enough room for our family and all our suitcases. 

The driver was very nice and didn’t mind Tyson’s giddy sense of humour.  He was East Indian, and at one point Tyson asked me, “Mom why that guy talk so funny?”  I explained to him that people who come from different countries sometimes sound a little different when they talk, it’s called an ‘accent,’ comparing it to Oma who talks with a Dutch accent.  I thought Tyson understood the answer, but then at one point he groaned and said, “Ugh…Why that guy keep talking so funny?”  I was a little embarrassed at Tyson's rudeness but the driver was a very good sport and he laughed right along with us.  He was very good with Tyson and asked him details about his trip, and asked Tyson to say ‘hi’ to Mickey Mouse for him.
I caught Tyson snuggling with Addisyn's baby while we waited to board the plane

When we arrived at Pearson airport, it was *crazy* busy.  Checking in and checking our luggage is pretty busy with five kids, and going through customs and security was even worse.  Unpacking all our carry-on bags, explaining Tyson’s medications, all 7 of us having to remove our coats and shoes, emptying our pockets...all the while trying to keep Addisyn and Tyson relatively happy.  We are so thankful for Braden and Merrick who are always so willing to help out when we need them.  I have to say though, we did feel a little like a freak show with everyone at the airport staring at our large family.  Most people just stared at us, but one lady did say to me, “I give you guys so much credit.  I didn’t fly with my 4 children until they were much older!”  

Once the airplane was in flight, we had to monitor Tyson’s oxygen levels to make sure he didn’t de-sat too much.  His sats did drop to 84-85% once we in the air, but he sat at that level for most of the flight.  Towards the end of the flight, he went down to 80...and I was thinking it was time to turn the O2 on...and then I looked at my watch and realized the time, and then the pilot announced that we were getting ready to land. So we decided not to bother with starting up the oxygen.  He is ok to de-sat for a little while, but definitely not for too many long periods at a time.  The kids were all very well-behaved on the plane, Tyson was running on pure adrenaline and was full of piss n vinegar, and Addisyn managed to have a small catnap to get her through the morning.  The landing went smoothly, and it was announced off the intercom that our family must stay on the plane until everyone else was off.  We were introduced to an Orlando Airport staff member who became our personal escort who guided us through our baggage claims and helped us get through US customs quickly and efficiently.  This was SUPER helpful because it is difficult to figure out where we're going, especially with 5 kids always wanting our attention fo rone thing or another.  I can't even imagine what it would have been like if we had to try to figure out where we were going on our own!  Even though we were the last ones off the plane, our family was definitely the first one who made it through the entire airport process.  
We landed safe and sound in Orlando, thank-you Lord!






 Once we made it through everything at the airport, we were greeted by Roger, our personal Give Kids the World greeter.  Roger helped us load our luggage onto the shuttle and the shuttle took us to our home for the week, Give Kids the World Village.



 When we arrived at the Village, we were immediately welcomed by Give Kids the World staff,a nd all the kids received a gift. Tyson got another Mickey Mouse, and the others received a stuffed Shamu whale. We spent the rest of Saturday getting settled into our villa and learning where everything was.  Brian picked up our rental which we had rented for Saturday and Sunday - but later decided we wanted to keep the van all week.  The shuttle which would take us to the Disney Parks leaves at 10am sharp (9am for Universal and Seaworld) so we decided that because our morning routine includes a nebulizer mask (Tyson is *still* coughing)  as well as a few kids who eat slowly at times...and chances are we'd want to sleep in every morning based on the amount of late night activities around the village, it would be much less stressful to leave for the parks when we are good and ready.  This was such a great decision because we want our holiday to be as relaxing and stress-free as possible, and having to be in a rush is never a good thing for Brian and me.  

Mayor Clayton welcomes the Kottelenberg Family


It was an exciting day and everyone was so tired by the end of it, so we tucked ourselves into bed early on Saturday night.  Ready for church in the morning.

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