Nicky’s Life Part 54

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 pay for holidays, short breaks and special days out for sufferers and their families/carers. I was happy to help this woman spread the word about her foundation and then several months later she asked me if Nicky had in mind a place to go for a vacation. “Oh, I don’t know” I told her. Nicky was having his hand surgery at the timeRead More

Nicky’s Life Part 53

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 could not comprehend my paranoia in making sure the hand healed straight. The problems with the scar tissue that covered Nicky’s hand before the surgery were many. Scar tissue does not breathe and it has no oil glands, that’s why it looked so bad, it’s very dry and squams constantly. One other big problem with scar tissue is that it does not “grow”Read More

Nicky’s Life Part 44

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 do to entertain himself. Before long he got very good and to make sure he won I used to sit in 2nd place with a bunch of turtles and throw them at anyone that passed me so they could not beat him. 🙂 He would be soooo happy to win! Of course 15 years later, now NIcky is the master of all games.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: 15

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: 21

“Butterfly Child” Book Excerpt Read by Me :-)

It’s EB Awareness week and I wanted something to illustrate EB without being “graphic”, so I decided to read an excerpt from my book, “Butterfly Child“. This is the beginning of Chapter 4, when we took Nicky home from the hospital. Here I describe the first month of having Nicky home and our challenges and learning curve. It’s truly quite descriptive. If you wanted anyone to learn about what it’s like to have an EB baby, this is what you need to share!!! Please note, I am not a “voice artist” and I do have an accent, but these are my words I am reading, so I did the best I could. Thank you for listening, and pleaseRead More

Where to get the Best Deals for my Books!

I know everyone likes Amazon, but if you knew how big of a cut they get, you’d be surprised! Hence, unless you’re downloading the eBooks for the Kindle, the best deals can be found directly from the publisher. So, here’s the scoop on the best deals for my books! eBooks Kindle is the way to go for my eBooks! Living with Epidermolysis Bullosa & Special Mommy Chronicles are only $2.99!! Losing Alex is also $2.99 and for Prime Members you can borrow it for FREE! This is because it’s an Amazon exclusive! I also like to give this title away from time to time. Thousands of people have downloaded it for free since its release. I like to payRead More

New Caringbridge Blog and More News!

I just updated Nicky’s Caringbridge Blog this morning…. Thank you for your support and thank you for allowing me to vent. http://www.caringbridge.org/visit/nickyz MORE NEWS! The Audiobook of Losing Alex​ will be available shortly. It’s so exciting for me! Also, I was able to lower the cost of my book Butterfly Child – A Mother’s Journey​ to $14.97 if purchased through the publisher. I can’t do nothing about the price charged by Amazon or B&N though, sorry. That is totally out of my control. That’s how much money they are making off my book, eghads! I am working on a “hard cover” version of the book as well, mostly for myself, but I will have it available for anyoneRead More

New Giveaway for My Book “Butterfly Child”

My new giveaway for my book “Butterfly Child” is now live! Enter for a chance to one 1 of 2 Autographed copies! Autographed by both Nicky and I nonetheless!! Here’s the link! –> https://www.goodreads.com/giveaway/show/150684-butterfly-child Thank you so much for your support… and if you have already a copy, please consider leaving a review! Much love <3 Post Views: 16

Nicky’s Life Part 8

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 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. November 2001 – Nicky was always my little ham when he was little. He started playing videogames when he was 4.5 years old and never stopped. If there was one thing thatRead More

Nicky’s Life Part 7

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-tubeRead More

Narration about my book “Butterfly Child”

Just before my 30th birthday I found out I was pregnant with my first baby. All my friends were already mothers and I had wanted a baby for so long that this pregnancy ended up being something surreal. I walked on air for the entire 9 months, it truly was Unicorns and Rainbows all the way. I was so happy. Then, the unthinkable happened. The day he was due, February 26th, 1995, I could not feel him move at all, not even when I ate something cold as he normally did, all my tricks to make him move failed and I was worried. The thought that he had died never entered my mind, however. The next morning, aRead More

Thank You & Happy Summer!!!

Love seeing all your pics reading ‪#‎butterflychild‬! It’s the perfect summer read! Thank you SO MUCH for sharing these Cristina Battaglin, Dianna Floyd & Molly Holm!! Please share yours with me~! Thank you and Happy Summer!! Post Views: 16

Nicky’s Life Part 5

This is part 5 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising a child with RDEB 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. Summer 1999 – Nicky was 2.5 years old here. This is about the time I started taking photos of Nicky’s blisters, and I only did that so I could accurately explain what wasRead More

Nicky’s Life Part 4

This is part 4 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising a child with RDEB 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. June 1998 – Nicky on my parent’s balcony in Italy. I was meticulous in keeping his skin covered to prevent new blisters and I used to always try hard to keep his handsRead More

Nicky’s Life Part 3

On the Facebook page I have for the book I wrote about my journey raising a child with RDEB 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. April 1998 – Another baptism, this time in Italy in a catholic church. Nicky looked spiffy 🙂 I was happy if only because my whole family was there, including several cousins. That meant a lot to me! Here’s the link on where to purchase the bookRead More

Nicky’s Life Part 2

On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on I will move on as Nicky ages. 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. This is the second one I posted in late April and this is what I wrote below: September 1997 – This is the day Nicky got baptized and dedicated at his Nonna’sRead More

Nicky’s Life Part 1

On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on I will move on as Nicky ages. 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. This is the first one I posted in late April and this is what I wrote below: August 1997 – Nicky was 9 months old in this picture. It was soRead More

Win My Book “Butterfly Child”!

Happy May everyone! I have two autographed copies of my book “Butterfly Child” to give away! You can enter at Goodreads, which will take entries from now until May 31st and then randomly pick two winners on June 1st! Good Luck everyone!!! https://www.goodreads.com/giveaway/show/136270-butterfly-child Post Views: 17

This and That

So many things to talk about! 1. I have an AMAZON GIVEAWAY going on! if you haven’t already, please enter and share, you can win my book “Butterfly Child”. Who will be the lucky person??? The giveaway will be active until the 22nd, so I hope someone by then wins the darn thing. Enter Now by following THIS LINK. Follow me on Twitter and Retweet please! Thank you! I will have giveaways on different platforms as time allows, on GoodReads for example, and I am researching others as well, so if you don’t win this one, don’t fret, there will be another one coming soon. 2. My next Podcast of “Butterfly Talk” is scheduled for April 21st at 3:30pm. MyRead More

“Butterfly Child” NOW AVAILABLE!!!

Good morning everyone!!! My book is now LIVE finally from the publisher’s website! Woot! Here’s some links for you! Paperback: The only way to get the book on paperback right this moment is through the publisher: http://www.lulu.com/…/butte…/paperback/product-22092004.html It will take a few weeks to “show up” on Amazon and Barnes and Noble, when it does, I will post the link. If you were interested in a “signed” copy from me, I will have a few available (for those within the US only) in a couple of weeks or so on my website. I wanted to keep the price low but this is a big thick book and it’s not cheap to print. I am sorry. To make itRead More