The Heart and Soul Family: Tired

Friday, August 22, 2008

Tired

It's 11:25 pm and I'm sitting her feeling pretty tired and ready for bed. However, Arianna took a 2 1/2 hour nap tonight from 6pm - 8:30pm so she is still up and going. I tried to keep her little bum up but she wouldn't wake up so I had to let her nap. I was hoping she would stay asleep all night but that didn't happen. My parents came over tonight so how could I keep her from wanting to wake up and play. She was so silly tonight it just blessed my heart to watch her play.

Oh yeah, I woke up this morning with a sore throat. Hopefully its just from having the AC on too low cause I really don't want to pass anything on to Arianna. She's already had a bad week. :(

1 comment:

Mami Adame said...: 1st, I wanted to say Happy Belated Birthday! Loved the pics.
2nd hope you have a heathy, realaxing weekend!
xoxoxo,
Ana; August 23, 2008 at 2:37 AM

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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, August 22, 2008

Tired

1 comment: