The Heart and Soul Family

Tuesday, June 21, 2011

Mother's Day Weekend 2011

BBQ's with the family!

My sister, mom & me

Ended with a pedi with my mom & Ari!

Arianna got her nails painted!

Heart Walk 2011

Walking in honor of our MLH Angels and Warrior!

Karissa & Arianna
(TOF Survivors)

Easter 2011

Easter fun at church

Devin's first egg!

I had to post this. Isn't she such a good big sister. :)

EASTER MORNING

It's a tradition of ours to fly kites on Easter.

Robert & Shawn on a recovery mission. LOL!

Ended our day swimming.

The love of my life!

MLH Day at the Fair!

This year I was able to get MLH a free day at the fair! It was a small turnout since it was mid-week but it was intimate and alot of fun!

My favorite pic!

Jacob & Arianna

To some this may just be a fun day at the fair. For us it was a HUGE step in letting Arianna around a huge crowd like that. I had tears in my eyes all day as I watched my baby girl just LIVE LIFE and HAVE FUN!

Arianna Marie

Arianna was born on 11/26/06. 4 weeks premature, and weighing 4lbs 13ozs. She was born with a congenital heart defect called Tetralogy of Fallot, which is actually 4 heart defects, and was later diagnosed with an ASD. She had open-heart surgery on 5/22/06. Her surgery was to patch the VSD, patch the ASD, widen her pulmonary artery, and attempt to fix her pulmonary valve. They created a man-made pulmonary valve out of myocardium to avoid a conduit placement, which would require multiple surgeries. On September 21st, 2012 we got the news that Arianna's right ventricle pressures are too high and she needs a pulmonary valve placed. When we meet with the surgeon we found out she also has pulmonary branch stenosis and a possible defect in her tricuspid valve. He will be addressing all of these issues at the time of surgery. On October 18th, 2012, Arianna had her 2nd open-heart surgery.

At 5 weeks old she was diagnosed with a genetic disorder called 22q11.2 Deletion Syndrome, which is caused by a deletion of a small segment of the long arm of chromosome 22. This disorder has many names such as 22q Deletion syndrome, Velo-Cardio-Facial syndrome, DiGeorge syndrome, Shprintzen syndrome, and Catch 22. So far there has been more than 180 anomalies reported in this syndrome, which is highly variable from person to person and no individual has all of the anomalies. Arianna has overcome many obstacles and we find peace in knowing that God is working miracles in her life. We set this site up to share our family journey. We know that God has a special plan for Arianna and our family!

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Tuesday, June 21, 2011

Mother's Day Weekend 2011

Heart Walk 2011

Easter 2011

MLH Day at the Fair!