The Heart and Soul Family

Wednesday, May 6, 2009

Ari got her own personal computer from Grams. Thanks Grams!

Passing the time while taking her nebulizer.

Playing Wubbzy online.

I can't believe she is playing with my old Barbie doll house!

2 comments:

The Portas said...: What a big girl!! She knows how to play games on the computer? Seriously? She is light years beyond Elijah in so many ways. I'm so proud of her! And she just couldn't look any cuter. Hope you're all doing well and staying healthy today!; May 7, 2009 at 11:52 AM
Tina:0) said...: The computer?! Really?! I have a hard time letting Gabby on it, let alone Vaeh! Will you come & teach me how to let my kids play on this thing?!

Looks like she's feeling a little better:0) Hope you all have a good weekend!; May 7, 2009 at 8:05 PM

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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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Wednesday, May 6, 2009

2 comments: