The Heart and Soul Family: Train

Friday, October 16, 2009

Train

Every time we go to Reid Park we always see the train go around the lake. We have always been so paranoid about germs that we have never let Arianna go on it. Well this weekend we changed that!

I can't tell you how good it feels to do normal things with my daughter. There is alot of hand washing involved but we do it.

8 comments:

jencooper said...: I bet she loved it!! Yea for hand washing!! I am so happy that you were able to do something normal.

<3,
Jennifer; October 19, 2009 at 7:31 AM
mina said...: That's great that Arianna got to ride the train. Yay for normal!; October 19, 2009 at 2:38 PM
**Colleen** said...: I agree as well, that is so great that you could do something normal.

Love that first pic btw =); October 19, 2009 at 6:17 PM
Unknown said...: I am so glad you all had a great time. I bet she was in Heaven and loved every second of it.
Its fun to be normal; October 19, 2009 at 8:09 PM
The Portas said...: Good for you for getting out with your little girl! I know how scary germs and public places can be, but it's also important to get out and experience the world. The pics are great!! xo; October 20, 2009 at 7:19 AM
Tina:0) said...: Isn't normal fun?!?!!! Sounds like you're having a great time!! Make sure to give her big hugs from us!!!; October 20, 2009 at 6:29 PM
Anderson Family said...: Yeah for hand sanitizer that lets us all be sort of normal!; October 21, 2009 at 11:53 AM
Kathy said...: We should work on making designer gloves for our kiddos!; November 3, 2009 at 10:16 PM

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, October 16, 2009

Train

8 comments: