The Heart and Soul Family: My BIG girl!

Wednesday, August 26, 2009

My BIG girl!

Arianna has been kicked out of our room again..lol! Since she is doing so many new big girl things (potty training is going great!) I have decided to try putting her back in her own room. Last night was the first night and she woke up twice. The second time she woke up I let her stay in our bed because it gets ridiculously bright in that room in the morning. So we went out and bought her some pretty purple curtains, which she loves, and put them in her room tonight. Hopefully it will help. I know it will take time but she is going to be 3 years old in 3 months and my goal is to have her sleeping in her own room by then. We'll see...

I just love this picture so I had to post it. She was reading the ASL (American Sign Language) alphabet poster.

So the story behind this picture is that my mom bought Arianna a glass tea set, which she loves. Well as you can see I put a towel down so she could have fun playing with water. Well after she was done I went to pour all the water out and on my way back I slipped on some water and broke all 4 cups!!! I felt horrible and still can't find the same set to replace. Go figure it wasn't the 2-year-old who broke her glass tea set. lol!

Tomorrow we are going to get the Holter monitor for Arianna. She has to keep it on for 24-hours. I'll post pics tomorrow.

1 comment:

Tina:0) said...: I know what you mean about the kids not breaking their toys... been there, done that!

As for the echo... I would think that they would do one if she needed it. If I remember, Ari's tet is pretty straight forward? Vaeh has all that extra mumbo-jumbo stuff (valve placed, pulmo. hypertension, etc.). Plus Ari is getting the holter & Vaeh hasn't had one of those... yet:0)

Give that cutie some hugs from us! Good luck finding the tea set:0/; August 27, 2009 at 5:26 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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Wednesday, August 26, 2009

My BIG girl!

1 comment: