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Monday, November 21, 2011


For quite some time now, we have been in connection with a man named Bob on Twitter, handle @Heart_Inspired. Quick story on him, he was found to have a CHD in October 2009 well into his mid-50's that went undetected his whole life, and had open heart surgery in December 2009 to repair his defect. He was/is an endurance athlete who was without a doubt kept alive through all of his athletic life when his heart defect should have taken him. God had a purpose for this man...

Bob was an athlete before for many wonderful reasons, but none more important than his reasoning now. He runs, bikes, swims and competes against himself for children with congenital heart defects. He does it for the little ones who were taken too young by their defect, for ones who are fighting through surgeries or hardships and ones who have conquered the most common and fatal birth defect, CHD. He dedicates his events to them, feels the wind for them as he runs and uses their heroism to get him through a difficult moment in a race. He is a man with compassion and dedication to what he believes.

This weekend, Bob came to Arizona to compete in what he says is the most challenging even yet. He completed the Arizona Ironman with a fantastic time of 16:33 alongside his son, also a CHD survivor. We had the honor of meeting him and his sweet wife tonight before he returned to Colorado and while he kept speaking of how Gabriella was an inspiration (which I completely agree) I could not get over how inspiring he is. His humbleness and determination is remarkable. He has beat the odds and has vowed to make the most of the gift he has been given. He truly has a heart for God, in more than a spiritual way.

Bob gave his Ironman medal to Gabriella, stating "Believe me, Gabriella is the true Ironman". It was a unique moment, knowing this man spent not only years and years of training but 16 and a half hours yesterday swimming 2.4 miles, 112 miles on bike and a full 26.2 mile marathon... and handed over this trophy to my little girl. We are honored to be the recipient of such a deep and meaningful gift. Gabriella is truly inspired also, and cannot stop talking about what he did. She is so proud of him.

You can do anything you set your heart to. 

Bob's blog can be found here: and on Twitter as @Heart_Inspired. Please follow and support him in his journey as he inspires others!!!

Friday, November 11, 2011

Gabriella updates

Because I have been wordless on my blog, I have missed some updates.

Gabriella had a swallow study done last month, because it was a mommy vibe of mine that her coughing and choking issues were related to her stroke. Sure enough, she has a weak swallow reflex. Her trigger to close off her lung region when swallowing is delayed and causes food and drink to pool right at the opening to her airway. She is successful in clearing out what is there but runs a risk for aspirating! We have some not so easy techniques to practice and help the process. One is always sitting while eating or drinking. Hard for a girl who is VERY active! And the other is no talking for 10 seconds after swallowing. Even harder for a girl who is VERY talkative!We aren't sure if this will improve or not, because of the muscle damage done to her body from stroke, but as always we are hopeful.

Clinic appointments are going well for the most part. It is all a balancing act with medications, but we are close to target on everything! She is growing perfectly and we do not have many concerns at the moment. Her next biopsy will be in February, as we wean her down from steroids and watch what her heart tissue says to that.

School is going smooth. Her school has been amazing working with her IEP and ensuring that she gets the extra help she needs on reading and writing. She is a wiz at math, and is quite the little gossip girl. We have dealt with minimal cootie issues, for which I am so thankful!!!

PJ is doing fantastic as well. He is in dance class (hip hop) and still plays Tball. He is a smart little guy with more daily energy than I will have in the remainder of my lifetime.

Thanks for checking in!!