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... all about our crazy, wonderful, "perfect" little life
Our Family
Drew Dylan
Addison Malyn
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March for Babies: Our Family Site
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Our Story
I first began this blog as a way to share pictures and experiences with our family and friends who live far away. I wanted to be sure that everyone could be a part of our lives as Drew grew up. On March 29th , 2008, we were blessed with a beautiful baby girl, Addison. At only 10 days old, Addie was air-vacced to Phoenix and diagnosed with Shone's Syndrome. This is a Congenital Heart Defect which consists of four different and complex complications including: Moderate Hypoplastic Left Heart, Mitral Valve Stenosis, Coarctation of the Aorta and a Ventricular Septal Defect. Addie underwent her first surgery, the new Hybrid Procedure, on April 19th and her second surgery on August 19th. They are planning on Addison having another surgery during the first 2 weeks in September. If all goes as planned, we will be able to go home after that and have a year and a half with her until her next (and hopefully final) surgery at the age of two. So now, this blog has an additional purpose, to take you all on our journey through Addison's progress and give you a chance to watch Drew grow up way too fast!
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Cut-A- Thon for Addison
hey...how do you have the dback pic already?
ReplyDeleteby the way.. addie looks AWESOME in these pictures and i cannot believe how much she's eating!! Oh my gosh! She's almost there! How are you getting her to take so much liquid? How much does she drink? That's where we're stuck still.. at about 5-6 ounces of water a day and maybe 3 of milk or pediasure.. oh i wish that were enough.. It's something tho!
We're going to Tuscon in the morning to meet with Marsha dunn-klein, the feeding therapist.. I'm really excited!! Hope u guys are good! When is the walk again?