Nicky’s Life Part 33

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 I can’t even believe I remember their names) were his favorites. At that time I watched every show he watched so I knew the ins and outs of the Teletubbies very well, lol. Just looking at this picture warms my heart because I remember clearly how happy he was to see the dolls! We got him both Lala & Po that day, andRead More

Nicky’s Life Part 32

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 now, but I do miss those cute old days… More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 21

Nicky’s Life Part 31

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 not that bad at this point. Most of his wounds were still from mishaps, skin getting traumatized from everyday life. It was only later, closer to his 8th Birthday that his itching would cause most of his wounds and I started wrapping with padding to prevent his itching to cause further damage. Itchy medicine worked “okay”, but since it made him drowsy IRead More

Nicky’s Life Part 30

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 for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 20

Nicky’s Life Part 29

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 go visit his grave, so anytime I pass by Phoenix for any reason (which is not very often), I feel the pull to go bring some flowers to my angel. I’ve had wonderful friends and some family members every now and again bring flowers and send me a new photo, of which I am immensely grateful. Both Nicky & Connor are well awareRead More

Nicky’s Life Part 28

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 Nicky to the hematologist at CHLA because Nicky’s iron level were borderline lethal. They scared me half to death. I had given Nicky liquid “Ferrous Sulfate” supplements since he was a baby but his blood no longer absorbed iron that way. His levels were so low they we had to drive to CHLA (90 minute one way) 3x a week during the summerRead More

Nicky’s Life Part 27

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 from the knees all the way down to the ankles, all the way around. It wouldn’t be until 2 years later that I was able to get most of that area to heal and not without major effort… More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 18

Nicky’s Life Part 26

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 time, used to be his adorable self and come and play with him and the water and put toys in the water while Nicky soaked. It was a fun time for both. It used to be preferable to soak him before taking off the bandages because it made everything come off very easily. By the time Nicky turned 13 or so, however, theRead More

Nicky’s Life Part 25

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 routine I was able to take him for a ride in a little wagon with his toys around the hospital and some volunteers played with him, blowing bubbles etc. In the end there was no perforation, his esophagus only looked perforated because at one point, in the middle, it split into two chambers, all due to the scarring and baffling experience with RDEB.Read More

Nicky’s Life Part 24

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. By now he had completely stopped eating solid foods as he could not swallow them well. As a new mother, I thought this was temporary and due to the wounds he had in his mouth. I was unaware of the issues with the throat contracting and constricting. No Doctor had ever mention that to me, and we were still waiting for the approvalRead More

Nicky’s Life Part 23

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 eyes are extremely painful and Nicky can go months without getting one of these abrasions, then he can get 3 or 4 in a row, each taking as long as a week to go away. We tried all sorts of things to avoid this from happening. Nicky flatly refuses any gels, creams or anything of sorts in the eye, always has. It’s onlyRead More

Nicky’s Life Part 22

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 it all! I love, love, love my angel More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 18

Nicky’s Life Part 21

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 spend the first day in the dark, but as he got older he tried to just live through the day, with the help of strong pain meds. His form of EB (Recessive Dystrophic) effects not only his outer skin, but all mucosal membranes, such as his eyes, mouth, throat and esophagus. Sometimes an eyelash gets stuck in the eye and causes the abrasion,Read More

Nicky’s Life Part 20

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 years ago and we love the CSDF ( Children’s Skin Disease Foundation/Camp Wonder) for all they do not only for Nicky but every child that attends this amazing camp. Sending much love to Amy, the Duck maker! We love you! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 21

Nicky’s Life Part 19

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 tide would soak him through. He loved that, but the bandage change afterwards, complete with sand in his wounds, was not a particularly nice one. He never wanted to go again. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 14

Nicky’s Life Part 18

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,   Post Views: 20

Nicky’s Life Part 17

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 much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 21

Nicky’s Life Part 16

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 been a very heartwarming thing to see. Of course, 10 years later, they have developed a love/hate relationship. They bicker and hate each other one moment, laugh and love the next. Typical brothers I guess? More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 14

Nicky’s Life Part 15

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,   Post Views: 13

Nicky’s Life Part 14

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 love”. These two are best pals till this day and I know they will be pals forever. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 15

Nicky’s Life Part 13

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 say or even repay. It’s a time for Nicky to spend time with other EB kids and to be with people that truly care and understand EB fully. In this picture… while all the other kids rode the horses, Nicky was too afraid to do that, so he just rode on the little carriage behind it. He loved it! More of Nicky’s storyRead More

Nicky’s Life Part 12

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 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. May 2002 – At 5 years old, Nicky was wrapped from head to toe, I even put gauze between the toes, I was so paranoid of him losing his handsRead More

Nicky’s Life Part 11

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 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. February 2002 – Nicky was always my smiling ham! He was 5 years old in this photo, which was taken in DisneyWorld (FL) for the “Have a Heart for EB” event.Read More

Nicky’s Life Part 10

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 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. 2001 – Nicky was 4.5 years old in this photo, just before he started kindergarten. Clothes have always been an issue, even today. There came a point where long sleeves anythingRead More