The Heart and Soul Family

Thursday, January 22, 2009

For her 1st night in her new room I have to say she did really good. She woke up about 3 times between 11pm-3am but I just came in, laid down with her and she fell right back to sleep. But because of my back problems is was not a very comfortable position for me so when she woke up at 6:30 I just brought her back to bed with me since Robert was already gone to work.

I'm not sure if its all the moving I did yesterday of sleeping on pretty much just pillows last night but my back is not is good shape today.

I know it will take a few days for her to get used to sleeping in there so we'll give it time.

She wake up first thing this morning and ran in her room, jumped in her bed, pulled the covers up (which this is a girl who hates blankets), and was all smiles. So I think her new room was a hit!

1 comment:

Unknown said...: Sorry it has been awhile since I have posted, I had Surgery and am just now getting around to everyone and catching up.

This is such a huge step for her being in a new room all by herself what a big girl, I think she is handling it great. I am the same way I get a little jelious when the girls want there Daddy instead of me but I have to remember I am around them alot more than there Father. Good luck with everything.

Karen; January 22, 2009 at 9:30 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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Thursday, January 22, 2009

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