January 24, 2015

The BIG Snow of 2015

We don't get a lot of snow, so when we get ANY,
WE MAKE THE MOST OF IT!
 
 
 
 
 
 
 
 
 
 

January 23, 2015

Ayden & Jude: A Five-Year Friendship

We have journeyed the past five years closely with Jude's family, as Jude was born only the month before Ayden at Vanderbilt. Jude was also born with hypoplastic left heart syndrome, and the boys' surgeries, struggles, and victories often coincided. We often nervously joked that the boys seem to follow each other around the hospital... from the floor to the PCCU and back again.

The first blog post that marked the beginning of our friendship can be found here: http://whattoblogwhenyouareblogging.blogspot.com/2010/06/buddies-ayden-jude.html.

Our families remain good friends. I don't know what I would do without Diana, Jude's mother, and I know that Ayden adores his heart buddy, Jude. Together we will walk as part of the Lionhearts Team. We will walk on May 16th for our families and for others.

Will you walk with us?
http://events.congenitalheartwalk.org/site/TR/Walk/General?team_id=2450&pg=team&fr_id=1150
December 2010 - The boys officially meet each other.
February 2011 - Zoo
March 2011
April 2011 - Boys' First Birthday Party
May 2011
July 2011
September 2011
November 2011
January 2012
May 2012
June 2012 - Post-Fontan Surgery
"on the floor" and unhappy
August 2012 - Adventure Science Museum
March 2013 - Jude's 3rd Birthday Party
April 2013
June 2013
November 2013
March 2014 - Jude's Birthday
April 2014 - Ayden's Birthday

January 20, 2015

LIONHEARTS' AUCTION

We need YOUR help with the Lionhearts' Auction!

Amy, a precious friend of ours, is doing a Facebook auction during Heart Week, February 7-14, to raise money for the Lionhearts. Amy is gradually adding her own creations to the auction; however, WE NEED YOUR HELP as well! Please consider donating items to the auction.

I know we have CREATIVE FRIENDS who make and do amazing things (and whose children make amazing things!!!), and I know we have FRIENDS IN SALES who have items people would love to try, and I know we have FRIENDS WITH CONTACTS who could obtain signed items or event tickets! If you are interested in donating to the auction, please message Amy through her fAveritte creations Facebook page: https://www.facebook.com/p…/fAveritte-creations/167262824900.

If you don't think you can donate something to the auction, PLEASE BID on items starting FEBRUARY 7th! We are so grateful for you all!

Lionhearts Nashville Congenital Heart Walk Fundraising page:
http://events.congenitalheartwalk.org/site/TR/Walk/General?team_id=2450&pg=team&fr_id=1150

January 15, 2015

The Lionhearts

Our family is a part of the Lionhearts Team for the May 16th Nashville Congenital Heart Walk. Please read the following for a snapshot of how our team came together and why we are participating:

OUR HEART STORY
Once upon a time in the year 2010 at Vanderbilt Children's Hospital in Nashville, TN, three families were forever joined by Courage, Hope, and Determination. Our children, born with a congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS), would fight for their lives over the course of three major heart surgeries, and, in one case, a heart transplant. One son, Tristan, was embraced by his Father in heaven.

Even with the heartache and struggle, our families have experienced so much joy and hope in the lives of these children. In response to our personal journeys, the families of Blake & Tristan, Jude, and Ayden will be participating in the May 16th Nashville Congenital Heart Walk as the Lionhearts.

Why help us fundraise for the event?

Congenital heart disease is the most common birth defect and the leading cause for birth-defect-related deaths worldwide. How common? Nearly 1 in 100 babies are born with a congenital heart defect. Congenital heart defects are actually 60 times more prevalent than childhood cancer. However, unless one has family or friends who have a child with a heart defect, one doesn't hear much about CHD.

Awareness is important to medical advancement. Awareness provides funds. Our families are grateful for medical advancements. Had our boys been born before 1981 (the first successful Norwood procedure was performed that year), they would not have survived more than a few days. Certainly, there is a need for research funds, for medical support, for family support, and for awareness. We will be fighting the heart battle for the remainder of our lives, both for our sons and for other families. These children are worth the fight!

"Be strong and let your heart take courage, all you who hope in the Lord" (Psalm 31:24).

To join us in the walk or to donate to the cause, please go to the following address: http://events.congenitalheartwalk.org/site/TR/Walk/General?team_id=2450&pg=team&fr_id=1150

Links to Blake and Jude's stories can be found to the right of our blog page under "Folks We Follow."
Ayden with his little brother, Brogan
Blake with his twin sister, Lauren
Jude with his little brother, Samuel

January 14, 2015

Nashville Congenital Heart Walk - May 16th


Our oldest son, Ayden, was born with a congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS). Essentially, Ayden was born with half of a developed heart and had to undergo three planned (and some unplanned) surgeries to reroute his blood flow. His life is miraculous. His struggle (and ours) in those first couple of years was intense. 

Though Ayden's heart has thus far been a success story, he still deals with some developmental issues with his gross motor skills and feeding. However, if you were to look at our son and interact with him, you probably wouldn't even know Ayden has a serious CHD... only his scar gives him away.

Congenital heart defects have no cure. One can't "fix" a CHD. We don't know what the future looks like for Ayden's heart. The oldest survivors with the same three surgeries are in their early 30s.

Over the past few years, we have become more and more involved in the heart community. So many people have supported us in our journey, and we hope to help others in the same way. We have grown to love many families, and we wear their burdens and their joys. We are all working hard to make the struggle better.

One way we can help is by participating in special events, such as Nashville's Congenital Heart Walk on May 16th. Events such as these help raise awareness for CHDs; they also help raise funds for research and family aid.

Our family humbly requests your participation. Please consider donating to this fundraiser, and/or please join us in the walk as a participant on our Lionhearts team!

We are grateful for your part in our journey. We are so immensely blessed!

Ayden's Lionheart Donation Page: http://events.congenitalheartwalk.org/site/TR/Walk/General?px=1072161&pg=personal&fr_id=1150