My daughter is full trisomy 18 and had obstructive apnea that was literally killing her. Well, they thought it was central apnea, but test results showed otherwise. She was trached, and has been beautifully pink and thriving since then. She is now 9 months old and doing great. buddzoo.blogspot.com We have a group on facebook - trisomy 18 mommies - that offers great support and it is a pool of many moms knowledgable with the medical needs of t-18 babies. You would probably find us to be a great source of helpful information and an understanding ear.
On January 7, 2010, at 5:11am, Sydney Grace Fodrie was born to Joel, Lindsey and big brother Rafe, weighing 4lb 4oz and measuring 15 1/2 inches long. She had a chromosomal abnormality called Trisomy 18, or Edwards Syndrome. While she was not expected to live through childbirth, Sydney Grace defied the odds. She miraculously lived for twenty days, passing on January 27, 2010. Sydney Grace touched thousands of lives and it is our hope through this blog, she will continue to do so.
.......TO LIVE WITH THE CONSCIOUS KNOWLEDGE OF THE SHADOW OF UNCERTAINTY, WITH THE KNOWLEDGE THAT DISASTER OR TRAGEDY COULD STRIKE AT ANY TIME; TO BE AFRAID AND TO KNOW AND ACKNOWLEDGE YOUR FEAR, AND STILL TO LIVE CREATIVELY AND WITH UNSTINTING LOVE: THAT IS TO LIVE WITH GRACE. PETER HENRY ABRAHAMS
Those are beautiful pictures. I am still praying for y'all.
ReplyDeletePRICELESS!!!
ReplyDeleteWhat sweet pictures, I could just sit and look at them.
ReplyDeleteMy daughter is full trisomy 18 and had obstructive apnea that was literally killing her. Well, they thought it was central apnea, but test results showed otherwise. She was trached, and has been beautifully pink and thriving since then. She is now 9 months old and doing great.
ReplyDeletebuddzoo.blogspot.com
We have a group on facebook - trisomy 18 mommies - that offers great support and it is a pool of many moms knowledgable with the medical needs of t-18 babies. You would probably find us to be a great source of helpful information and an understanding ear.
God bless,
Susan Budd
Praying for you all! wonderful pictures!
ReplyDeleteToo sweet! Praying everyday for your sweet girl!
ReplyDelete