The Heart and Soul Family: Synagis Approved

Monday, April 7, 2008

Synagis Approved

I just got the call from our pediatricians office and they were able to get the Synagis (RSV) shots approved. THANK GOD! I was so worried Arianna wouldn't be protected before going in tomorrow. So, I let her take an hour nap and now I have to wake her up to go get shots. I hate making her get shots, but it's for her own good. Well better run...

4 comments:

jencooper said...: Woo hoo - glad that you got the shots approved! They are so important!

<3,
Jen; April 7, 2008 at 4:23 PM
Samantha said...: Yea for the Synagis! What a relief. I love all the pictures from the weekend...the ice cream picture is the best! I am glad that you had such a great appointment the other day and I am thinking of you all today while you go in for the other tests. Good luck with the Versed...that stuff is great when they are all goofy, but it is a real bummer coming off of!

Hugs,
Samantha; April 8, 2008 at 5:12 AM
mina said...: So glad Arianna's synagis got approved, don't you just hate dealing with insurance companies?

And it's awesome that the neurosurgeon gave Arianna such a good report. Keep us posted about how the testing goes, I'll be keep your little one in my prayers!; April 8, 2008 at 9:32 AM
Colin's Blog said...: Yeah for Synagis!! That is the most important shot for these heart kids.; April 8, 2008 at 10:47 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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Monday, April 7, 2008

Synagis Approved

4 comments: