This is part 7 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se.
This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.
March 2000 – Nicky is 3.5 years old here in this photo taken at Lucile Packard Children Hospital @ Stanford as we were getting him ready for his first throat dilatation/g-tube placement. It was a decision that was hard to make, but in the end his failure to thrive made it impossible to do “nothing”. At 3.5 years old he only weighed 21lb. Only a 3lb gain since his 9 month weigh in at 18lb. His height and head circumference were also dangerously plummeting. I hated putting him through this, but I felt I had no other choice. It was a decision I never regretted.
He’s clutching his best friends, Timon & Pumba that we got at DisneyWorld a month prior. There is a whole story in the book on how we got those!!!
Here’s the link on where to purchase the book if interested:
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Love & Light,
