The Heart and Soul Family: UMC

Monday, February 16, 2009

Happy CHD Day!

I know I'm a little late but Happy CHD Day!

This year we took balloons to the children at UMC. We also baked cookies for the nurses. Here is a picture of Arianna baking the cookies.

As you can see we did the easy cookies. :)

Arianna had a blast with all the balloons in the house. Here she is Friday night having fun in the living room.

~Cyrus & Arianna on CHD Day~

My family helping me take balloons to the children. Unfortunely, my mom was the one taking the picture and she was the one who helped me the most. You rock Mom!

This was one of the most rewarding and fun things I've ever done. I can't wait to do it again next year at the new Diamond Children's Center.

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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Monday, February 16, 2009

Happy CHD Day!