Category : Nicky’s Life

55 posts

August 1997 – Nicky here is 8.5 months old and with my help he can stand up. At this point his feet were not too bad so he could put some weight on it. Plus, he was not that heavy! This is key and one of the reasons why nowadays it’s painful for him to …
July 2013 – Nicky, 16.5 years old, on the deck of our cruise ship as it was approaching Dawes Glacier. Following is an excerpt from the Book “Butterfly Child”. In early 2012 a woman from the Scott Ward-Schofield Memorial Fund contacted me. This Charity was formed to raise awareness for Epidermolysis Bullosa and arrange and …
December 1998 – Nicky, 2 years old, showing off his straight ‘new’ hand after surgery. Following is an excerpt from the Book “Butterfly Child”. The hand itself, thanks to my hellish efforts did heal up straight, but for a while there I thought it wouldn’t. As wonderful and caring the hand surgeon was, he just …
October 1997 – Nicky, 11 months old standing up on the couch. He was so excited! Following is an excerpt from the Book “Butterfly Child”. This happened right around the time this photo was taken: “A few days later, in the evening, Nick and I were watching “Wheel of Fortune” when Nicky out of the …
June 2001 – Nicky, 4.5 years old @ Stanford just before his dilatation. Following is an excerpt from the Book ‘Butterfly Child’ Chapter 9 “One of the things that turned out to be very frustrating about the move was finding a new Pediatrician. After much research I took Nicky to the first appointment and let’s …
Nicky in Kindergarten, late 2001 – Kindergarten was only “half day” so school started a little after 8am and ended at 11am. The teacher suggested him coming in on Tuesday/Thursday only to get used to it, and if he could handle it, then he could come every day. This was all fine and dandy, but …
March 2009 – Brotherly Love! Nicky (12 years old) is hugging his little brother Connor (5 years old). So cute!!! I love doing digital scrapbooking but I haven’t done it in a very long time… as soon as I am finished digitizing all my old videos I will try to devote a morning a week …
September 1997 – The Theme for Nicky’s nursery was Pooh as it’s painfully obvious! I love how I set up this photo in his crib with all the Pooh characters. And that smile… it just melts me all over… More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love …
August 1997 – Nicky and I on our way to my anniversary dinner…. Nicky looks so spiffy, but despite the smiles, behind the scenes, I was a mess. At this point I was taking Nicky to the Physical Therapist twice a week and she became sort of a confidant; I felt she was one of …
March 2001 – I was thinking about this picture just the other day when we were driving back from Stanford and I was so happy to find it. Isn’t Nicky cute? “Casa De Fruta” used to be just a big fruit stand, now it’s a mini-amusement park, complete with a restaurant, rides and tons more, …
September 1997 – I love this picture of 10 month old Nicky with his dad, if only because of those BIG blue eyes! His poor mouth was in bad shape, he had already stopped eating baby food at this point and could only ingest liquids. On occasion he could chew on a cracker, but it …
December 2008 – Nicky in his Mecca! He was 12 years old in this picture at a GameStop at the Antelope Valley Mall. When Nicky was 4 years old I bought an old SuperNintendo so I could teach him to play Mario Kart; I loved that game! I thought that this is something he could …
October 1998 – This is my dad’s absolute favorite photo with Nicky, taken at the Milan airport in Italy on the day we were flying back home to Phoenix. Nicky was almost 2 years old. I know it may seem bizarre since they are giving us their back, but dad spent a great deal of …
October 2002 – A fun memory of Disneyland with Nicky, almost 6 years old. We spent the day with a couple of other EB families and it was a blast. It’s fun to remember the good times too. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & …
October 2010 – Nicky here was almost 14 years old when we went to Minnesota for a counsel for a Bone Marrow Transplant. My darling boy was just out of anesthesia here while we were waiting for our ride to take us back to the hotel. They had just taken some biopsies and did blood …
My little guy! Nicky here was 1 month old, this photo taken on New Year’s Eve 1996. I had just gotten his face all healed up from the scratches he had on his face due to his nails, so at that time I resorted in putting gloves on him to prevent further damage. I tried …
My sweetie pie! I just want to pick him up and cover him with kisses. Here he was about 6 months old in the late Spring 1997 and taking a nap surrounded by pillows. I will forever regret not bandaging his hands back then, I just did not know they would web and contract. No …
May 1998 – I love this picture of my grandma Rina (then 95 years old, she passed away in 2005 close to her 102nd birthday!!), playing around with Nicky when we spent 8 months in Italy. My mom is holding him. We had gone to Italy to basically save me from a nervous breakdown. I …
January 2009 – Nicky was 12 years old in this picture showing his “talent”, LOL. He can’t really keep his legs straight to walk, but he sure can do other things… crazy! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,  
June 2008 – Nicky was 11 years old in this picture taken at Camp Wonder in Livermore (CA). I started taking Nicky to camp in 2003 when I was pregnant with Connor and we’ve gone every year since. Nicky told me the other day that he’ll go as long as they allow him, “it’s MY …
February 2004 – Nicky was 7 years old in this picture with his little brother Connor, who was 6 months old. I love this picture. I can’t help but remember how much Nicky loved his little brother when he was little, he simply adored him. Of course their relationship has changed over the years and …
August 2007 – Nicky was 10 years old in this picture playing in the fancy fountains with Connor (almost 3) in front of the Royal Palace and Palazzo Madama of Turin, Italy. It was an unforgettable trip we took to celebrate my parent’s 50th anniversary. I saved money for years to make sure I could …
October 31, 1998 – Nicky was almost 2 years old on his 2nd Halloween. I decided to take him Trick-or-Treating at the mall and when we passed the Toy Store they had a new toy available, the Teletubbies dolls. Nicky LOVED the Teletubbies! He was in awe looking at the display. Lala & Po (and …
October 2003 – Nicky was almost 7 years old when Connor was born. He used to love to just look at him. At times I would put Connor in his bouncer next to Nicky so he could talk and play with him. They were so cute! It’s hard to believe how different their relationship is …