The Heart and Soul Family: We actually got out the house

Friday, March 21, 2008

We actually got out the house

Just had a minute and wanted to share these pictures from today. We had lunch with Grams at work and Arianna enjoyed the fountain outside.

The picture below shows her signing "water."

Hope you all have a wonderful Easter!

6 comments:

Kathy said...: NO O2...what?!?!
WHat a beautiful site!!!
She is looking lovely....
Krista..Megan...notice the summer top that she's sporting....too cute!!!
Thanks for posting the pics...
Happy Easter Vanessa and Arianna!!!
Katny and boys; March 21, 2008 at 9:24 PM
Tina:0) said...: She looks so wonderful! We're jealous of the short sleeves and sunshine! Its been fairly dreary here in Ohio, so send some of that sunshine our way! Hope you all have a happy easter!; March 22, 2008 at 5:18 AM
jencooper said...: She is so cute! And no O2!!! Amazing! I am so happy that you were able to get out and about for a little bit! I hope that you have a wonderful Easter!!

<3,
Jennifer; March 22, 2008 at 8:44 AM
Tracy said...: Wow . You guys are outside with no coats on !!! And a sleevless shirt to boot ! We still have icky snow here . Sigh .
Glad to see Arianna is doing so well .

www.caringbridge.org/visit/margaretreed1; March 22, 2008 at 10:55 AM
Krista said...: So cute...I love the jeans and tank top look (rub it in Kathy!)

I love that she is signing and looking so good...even if the O2 has to come on at night...it must just be awesome to just get up and go during the day!

Happy Easter!; March 22, 2008 at 9:15 PM
Anonymous said...: Glad you got to get out of the house. I hope Arianna enjoyed Easter, and that it was warmer there than it was here. Take care. Jennifer; March 23, 2008 at 9:54 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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Friday, March 21, 2008

We actually got out the house

6 comments: