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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, May 29, 2014

The Opening of a Lily Flower and SOFT's Free Care Book (For Trisomy 18 & 13)

On Monday, the first lily finally opened in Lilly's garden!  There are hundreds of kinds of lily flowers in the world (as opposed to only one unique Lilly girl aka Little Firecracker).  This particular lily is called a "sugar carpet lily."

I just peeked out the window and see that three more have opened.  I need to get an updated picture and maybe cut one to bring inside.

This is the 2nd year I've had those lily bulbs in the garden and I was amazed at how they've doubled in height.

I consider the book Care of the Infant or Child with Trisomy 18 or Trisomy 13 by Ann Barnes and Dr. John Carey to be THE book for help in raising a child with Trisomy 18 or 13.  The book is published by SOFT (Support Organization for Trisomy 18, 13 and Related Disorders.) and is available in paperback and electronic version.  (To see all of SOFT's publications, including both versions of this book, click here.)   If you'd like the free e-book version, you will need to fill out a form, and then the link will be e-mailed to you.  You can go directly to that form here.

Here is a summary of the book from SOFT's website:  "Often referred to as 'the Care Book,' it tells of the complex issues of care and living that caretakers (parents) and these children cope with in their everyday lives.  Topics include diagnosis, common problems, surgery, milestones, mortality and more.  The book closes with a table of recommendations for health supervision, and anticipatory guidance from Dr. John C. Carey, SOFT Medical Advisor." 

I ordered this book right after Lilly was born, and devoured it.  My only regret is that I did not have the strength/courage to order it BEFORE she was born and read it.  I could have been more familiar with typical Trisomy 18 issues then.  (If you're pregnant with a Trisomy 18 or 13 baby, and are reading this, please order this book.  It will give you both hope and lots of practical information.)

One fun thing about the e-book is that there are a couple excerpts from this blog about Lilly in it.  :)  You can read about those references on another blogpost I wrote here.

Here is one little girl that is a big encouragement in the Trisomy 18 world - Bella Santorum.  (She is the daughter of Rick Santorum, who has been a Senator and has run as a presidential candidate for the Republican party.  Her mom Karen has written several books.)  Earlier this month, Bella celebrated her 6th birthday!  What an amazing milestone in the Trisomy 18 world!  Here is a recent picture of happy Bella, with her dad and mom, Karen:

Rick, Bella, Karen Santorum
"And we know that all things work together for good to those who love God, to those who are the called according to His purpose." - Romans 8:28

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