The Heart and Soul Family

Wednesday, January 14, 2009

FYI - The new cabinet spot has turned into the new hiding spot. When she is in trouble....yep...that is where she goes. How can you get mad at her when she is being so adorable. But she definintly has been pushing my buttons lately. I'm just happy she is finally falling asleep again before 9pm. But tonight I went grocery shopping late and when I got home by 7:45 she was already in bed. I have to admit I was a little bummed that she was already in bed. That is the only time I get to snuggle with her. Oh well...at least Daddy was able to get some snuggle time in.

Well...I've been extremely busy on the job hunt. I have to do tons of employment tests and it just sucks. :( Hopefully I'll get a hit soon.

2 comments:

Kathy said...: Good luck on the job hunt...it does stink out there right now.

That's funny that she hides in the cabinet when she's mad...(like you don't know where to find her!)

Ohh..this means the diva is forming....can't wait to hear more about that one!!; January 14, 2009 at 10:05 AM
Tina:0) said...: Don't they grow up too fast?!! She's getting too cute! You watch... she's going to take off all of a sudden & you'll feel like you miss it!

BTW - I love the hiding place... wish I had one of my own (I'd be there right now!).; January 14, 2009 at 2:54 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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Wednesday, January 14, 2009

2 comments: