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Friends and Family of AJ,
In case you have not heard, or checked our the blog, we have a beautiful baby girl! We would like to thank all of you for your continued prayers and support. You all rule. We have had a tense few weeks sitting around waiting for a diagnosis from the doctors. Abigail has been in the Neonatal Intensive Care Unit (NICU) for the first few weeks of her already blessed life. The doctors told us that she had some abnormalities when she was born and that further testing would be required to determine her status. After extensive tests and some retesting the doctors have diagnosed her with Zellwegers Syndrome. We are attaching a website that will help explain in better detail what that is.
http://www.ninds.nih.gov/disorders/zellweger/zellweger.htm
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The low-down is that AJ's brain did not develop properly from the beginning. She also has a small hole in her heart, some kidney problems, cataracts, low muscle tone, and some hearing loss. To be discharged from the NICU she will have to show the abilities to maintain her own body temperature, regulate her respiratory rate, and to feed. She still has not shown the natural instinct to feed herself and will most likely require a direct feeding tube into her stomach before she comes home. AJ has also had some trouble breathing recently. She has been on a ventilator for the past few days and will likely have trouble breathing for the rest of her life. As you all will probably soon read the prognosis for Zellwegers is poor. We want each of you to know how excited we are to be parents. We consider ourselves extremely lucky to be able to hold our baby and to tell her we love her. Many parents never make it this far and never get to experience the awesome feelings that we now cherish.
Our future appears to hold many tough moments and some pretty daunting challenges, but we are excited to get out there and live life to the very fullest with our beautiful baby girl. One of our great teachers told us that, "Everyone comes into our lives for a reason. They teach us something about life and ourselves." Abigail is teaching us to cherish every moment we have with those we love and care about. We thank all you again for your concerns and support. We look forward to a long, happy life with the most beautiful girl either one of us has ever met.
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Very sincerely,
Jay, Lauren Lea, Abigail, and Killer
p.s. This Saturday (June 28, 2008) we are throwing a one month birthday party for Abigail on the 5th floor of Wilford Hall Medical Center (Lackland AFB, San Antonio) and you all are invited. No need to bring a gift, she has more clothes than any one person could ever need. Party hats will be worn...