Nicky’s Life

July 5, 2020

Nicky’s Life Part 76

November 2014 – What an awesome memory!! We met Nick Vujicic in Ventura during one of his events and it was amazing. Nick had invited Nicky after he saw him on a news piece. What an inspiration! More of Nicky’s life in the book: http://www.butterflychildamothersjourney.com/ Post Views: 1,090

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April 23, 2020

Nicky’s Life Part 75

March 2017 – This is still one of my favorite pictures ever! Kaley Cuoco on the set of Big Bang Theory hugging my Nicky. She’s a champion for EB Awareness and is amazing!  More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 1,564

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December 29, 2019

Nicky’s Life Part 74

Halloween 2002! Nicky loved Barney! Here he was almost 6 years old  More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 1,052

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September 12, 2019

Nicky’s Life Part 73

Nicky’s first Halloween! October 1997 – Nicky was my little Pooh Bear! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 1,324

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July 23, 2019

Nicky’s Life Part 72

October 1999 – Nicky’s first official visit to the Pumpkin Patch! He was almost 3 years old. More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 1,809

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April 11, 2019

Nicky’s Life Part 71

July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat,...

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March 5, 2019

Nicky’s Life Part 70

June 2000 – Nicky was just a little over 3 years old in this picture hugging Barney. He loved Barney and Teletubbies, Sesame Street and Blue’s Clues, he would watch them all day long, over and over again. At the time he could walk OK, albeit very carefully and slowly,...

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October 10, 2018

Nicky’s Life Part 68

September 2014 We had quite an encounter with Orlando Bloom at the ROCK4EB Fundraiser in Malibu. We had a 10 minute chat.. He rubbed my shoulder and told me I was a brave woman. Mind Blown!! Then he took a photo with Nicky. A short video of the encounter here:...

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September 4, 2018

Nicky’s Life Part 67

September 2010 Connor had gotten a kitty for his birthday and the boys just loved her. They still do! She’s too heavy now for Nick to pick her up or hold her anymore (I need to put her on a diet, LOL), and she’s become a bit reclusive over the...

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July 3, 2018

Nicky’s Life Part 66

February 2002 – The famous rainbow cupcake at SeaWorld (Florida)!! From the book: “Before we left the park that evening we had to grant Nicky one last request: earlier in the day he had seen this “rainbow” cupcake and bugged us about it, but at the time we could not...

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May 30, 2018

Nicky’s Life Part 65

September 1997 Nicky was starting to crawl at 10 months old and it was worrisome. His problems with his throat had become evident, as he would not swallow his saliva, so the front of his shirt was always wet. His hands (which I had no idea they could web) were...

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April 24, 2018

Nicky’s Life Part 64

September 2007 Nicky attended an EBMRF (ebkids.org) fundraiser at the Pier in Santa Monica and got to meet Joely Fisher, half-sister of Carrie Fisher. She was adorable and so sweet to him. Just to know she knows what EB is makes my heart swell! More in the book –> http://www.butterflychildamothersjourney.com...

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April 4, 2018

Nicky’s Life Part 63

September 5, 2004 Connor’s first birthday was really fun for Nicky. He laughed and laughed seeing Connor destroy his mini-cake (which we got in purpose, LOL)! After I gave Connor a bath we continued the celebration with present opening. Connor at 1 was a little doll. Nicky just adored him....

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March 6, 2018

Nicky’s Life Part 62

December 2001 – We spent the holidays in Italy with my family mostly because flying after 9/11 was absurdly cheap, but I was aching to see my mom, who spent the 3 previous months in a hospital following a scary infection that almost took her life. Nicky had a blast...

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