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!

Weekend with the Camerons

 I just LOVE doing happy updates on Tyson's blog!  His blog was primarily set up to keep everyone informed on Tyson's progress as he stayed in the hospital, surgery updates, cardiologist appointment reports, matters for prayer and concern, etc.  It is rare that I get on the computer just to type about joyous events, but with thanksgiving we are able to report good news too.  And I am praying that I get to write these kind of updates more frequently!

During the last week of August, we spent a weekend up in Kawartha Lakes with a lovely couple Don and Nancy Cameron and their family, at their cottage on Clear Lake.  The Camerons are sponsors and supporters of Cardiac Kids, a volunteer group which seeks to raise funds for children with Congenital Heart Defects (CHD,) in support of Sick Kids Foundation.  The Camerons have two daughters, Joanne and Chrissie.  Chrissie was born with a severe heart condition called Tetralogy of Fallot.  She was born in 1978 and was undiagnosed for over a year before having her first open heart surgery, which she also had at Toronto's Hospital for Sick Children.  Chrissie and the Cameron family lived their lives in much the same way as we do, with surgery after surgery, and the doors to Sick Kids Hospital always revolving around and around, as they went in and out, in and out.  Chrissie was married for almost four years to a wonderful man named Michael. Tragically last summer, after complications following a spinal surgery, her heart unexpectedly gave up, and she lost her battle with CHDs and passed away.  Families with children who have severe heart problems are warned about things like this, that it can happen at any time without any explanation, but nothing can truly prepare you for the unexpected loss of a child.   We are so sorry for their loss and would have loved to have met Chrissie.  It is through Chrissie's loss that we were able to meet this wonderful, loving family the Camerons.

The Camerons wanted to do something for other "heart families" who are going through what they have gone through.  So they contacted Cardiac Kids and invited select families to be their guests at their cottage in the Kawartha Lakes.  Our family was invited to join them for a weekend in August, so we spent from Thursday to Sunday at the Camerons' cottage with them, and did we ever enjoy our time away! 

Nancy and Don Cameron

Don and Nancy Cameron are a lovely couple with warm and caring hearts.  We immediately felt welcome in their home, and it didn't take long for the kids to get used to cottage life.  Late nights and lazy mornings, their morning cup of chocolate milk, some early morning fishing, a hearty breakfast, some time in the lake swimming, boating, tubing, more fishing, a delicious lunch, more time in the lake paddle boating, more tubing, more fishing, some t-ball, hockey, more fishing, another scumptious home-cooked dinner, and then some more fishing.  We enjoyed a weekend full of activity, relaxing, and enjoying family life.  And, oh yeah, did I mention tubing and fishing? ;P

There was a lot of laughter, and even a few tears as we shared our stories and our concerns for the future. Over-all was one of the most relaxing times away we've had in a very long time.  Not only was this trip a complimentary, all-inclusive vacation, but Don and Nancy were our hosts for the entire weekend, so I didn't even have to cook!  The food was scrumptious, the company was great, and memories were certainly made.  

 
Don helping Kenya get her fishing rod ready
Braden, Tyson, and Kenya waiting patiently for their large-mouth bass

Braden's Big Catch

Merrick's Big Catch

Of course, what would a vacation be without hockey?

And of course some mask time every morning and night
Addisyn was pretty good all weekend.  She mainly sat on her bum and watched all the activity around her.



Me "helping" Nancy in the kitchen
I love how geeky Tyson looks in the picture!


The hooligans hanging out on the tube one night during a campfire

Kenya and Olivia, the Camerons' grand-daughter


Mom and Dad take a turn on the tube....I was happy to have Kenya and Tyson along so I would be sure Don didn't go too fast ;)

Camerons' grand-children, Olivia and Cameron, with Tyson

Trying to figure out the paddle boat

Tyson and me with the Cameron family:  Nancy & Don, Joanne & Jeff with their children Cameron & Olivia, and Chrissie's husband Mike
THANK-YOU 
DON AND NANCY CAMERON 
AND FAMILY!

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