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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, December 19, 2013

Trisomy 18 article in Clinical Nutrition

I want to thank everyone that hung in with me for my 17 days of remembering Lilly.  My stats skyrocketed during those days, so I know people were reading.  I just don't know who most of you were!  I was very pleased to hear from several newer Trisomy 18 families who found my posts helpful.  I had hoped I could help someone by summarizing Lilly's life because I know I was not good at labeling my early posts.  Perhaps the summary is like an "index."

Recently my step-mom sent me a scholarly journal called Topics in Clinical Nutrition.  The current issue, (volume 28 number 4 October - December 2013) has an article entitled "Feeding Changes in Children with Trisomy 18: Longitudinal Data on Primary Feeding Method and Reflux Identification and Treatment" in it.  (You can read the abstract at this link:  .  (The article is currently available for purchase.  I'd be happy to send anyone a copy that is interested.)  The most exciting thing about this article is that the authors do not call children with Trisomy 18 "incompatible with life" but call for more research to be done to help these children!  With all the advances in medicine, there is no reason more can't be aggressively done to help these children.  They are so worth it!

I'll leave you with a funny picture of Solomon.  He loves to feel his hair blowing when Hunter vacuums.