Tag : Nicky’s Life

54 posts

July 2000 – Nicky was 3.5 years old in this adorable photo of him hugging Barney in our home in California City. By then I had already started wrapping his whole body as much as I could for protection. I hadn’t yet started wrapping with padding to prevent his itching, maybe because his itching was …
June 2009 – Nicky at Camp Wonder! He was about to get on the “Dryers” bus with several other boys from his cabin, many with EB like him, which took him to the Oakland A’s baseball game. This picture makes me smile. Totally “Nicky”!!! More of Nicky’s story in the book… Thank you so much …
June 2005 – This is a very special photo for me because it has all my three boys together, in the only way they can be together. I have this one framed in the house. Because Alex is buried in Arizona (at the Queen of Heaven Cemetery in Mesa), I don’t have many chances to …
Fall 2004 – This is actually a quite famous photo of Nicky, I used it for all kinds of things, LOL. It was taken at CHLA (Children’s Hospital Los Angeles) after the first round of iron infusions were over. He was soooo happy!!! It cracked me up. Just a few months earlier his Doctor referred …
October 2002 – This is Nicky just before his 6th Birthday at Disneyland with Pooh. At this point he could still walk somewhat well, but not for long stretches. Every now and again he had to sit in his stroller to rest. His legs at the time were just… horrible. They were complete open wounds …
November 2004 – Nicky was 8 years old here, back when I could still give him baths. I did put a little bleach in the water to kill infections, but not a whole lot. At the time the pain level was not as bad, plus his little brother, who was 1 year old at the …
July 2001 – Nicky was 4.5 year old in this picture at Lucile Packard Children’s Hospital @ Stanford. He had had a dilatation which is normally routine for him, but this particular time the Doctors were fearing a perforation, so they had to keep him several days to run test after test. To break the …
July 1997 – Nicky was a little over 7 months old here and the problems with his mouth are already quite evident. Because he could not swallow his own saliva due to the severe problems with his mouth and throat, he would drool endlessly. So much that I would usually put a bib on him. …
October 2000 – Nicky was almost 4 years old in this photo. The red, swollen eye was caused by a combination corneal abrasion/wound inside the eyelid. Recessive Dystrophic EB means not only wounds on the outside skin, but also on all mucosal membranes, which include the eyes, mouth, throat and esophagus. These wounds on the …
August 2011. This picture always makes me smile! We were at Universal Studios and it was majorly HOT. Nicky is always hot anyways and has a fan on him at all times because he’s covered in thick bandages. We sat in the Tour area and there were a ton of fans and Nicky’s expression said …
June 2010 – Nicky and his little brother Connor at Camp. Nicky was having one of those “corneal abrasions” we totally despise. As I write this he’s having another one. That’s when he somehow scratches his eye and it’s extremely painful and it takes a few days to heal. When he was little he would …
June 2009 Nicky with one of the Ducks one of the moms makes for all the campers. Nicky has many ducks at this point, since he’s been going to Camp Wonder since 2003. To read more about the story behind the Ducks, please go read Amy’s story HERE! He graduated from camper to counselor 2 …
August 2008 – Nicky at the beach. It was not exactly a fun day for him. After a while we had to make sure he was under a big umbrella with a wet towel around his neck. At one point he inched closer and closer to the water, so that every now and again the …
June 2007, Nicky’s graduation from 5th grade with his AIDE Mrs. Drossel (behind him) and his teacher Ms. Hernandez. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,  
September 2006 – When Connor was little he never left Nicky’s sight. He would sit right next to him at all times. It was so darn cute! Even today if I am looking for Connor, he’s not far from Nicky. Two peas in a pod! More of Nicky’s story in the book… Thank you so …
September 2005 – Without question, Nicky has always been incredibly fond of his little brother. Connor here, at 2, was still small enough for him to be able to hold him. In return, Connor was always very aware of how gentle he had to be with his big brother. As a mom, this has always …
September 2004 – Nicky always found the most unusual, but surely comfortable positions to sleep! Here he was almost 8 years old. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,  
September 2003 – Nicky wasn’t quite 7 years old when his little brother Connor was born. Nicky would spend a lot of time just staring at him in awe! He was so happy when he was born that at the hospital he told me he was so happy he now had “a little brother to …
June 2003 – 6 year old Nicky went to Children’s Skin Disease Foundation/Camp Wonder for the first time and it completely changed his life. Even though Nicky is too old to be a camper now, they made him an honorary counselor, so he can still go. We are enormously thankful, more than we can ever …
This is part 12 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 …
This is part 11 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 …
This is part 10 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 …
This is part 9 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 …
This is part 8 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 …