I talked about my “Concoction” of various healing ingredients that I use to get Nicky’s wounds to heal on my blog here, and with the following video I wanted to show how I apply it on the wounds and info on where I get some of the ingredients and also about a couple of more ingredients I added. The first one is the Aloe Vera Gel I got at GNC (also available at Amazon.com) and the Gentian Violet that I got at RiteAid (also available at Amazon.com). Hope this helps someone! Until there is a cure… Love and Light, Post Views: 735Read More →

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 approval from the insurance for Stanford (where the EB Doctors were). Only 3 months later Nicky started vomiting blood during a feeding which prompted the first trip to the ER. He never ateRead More →

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 only recently that he puts eye drops in (he won’t let me do it), which range from burning like hell but working great, to not burning and barely working. He decides how andRead More →

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, other is a slight scratch or when it gets dry after a night’s sleep. Even with all the excruciating open wounds he has, he hates the corneal abrasions the most. It sucksRead More →

A lot of people often ask me how I cope and how I move forward every day. The answer is… if my son can cope and endure, who am I to complain? The backstory of the quote below from my book “Butterfly Child” is an event that stayed with me and I always think about. Nicky was 5 years old, in kindergarten. Walking into the classroom after recess, he tripped on the mat and fell head first into it. The teacher called me in a panic. I flew to my son, and when I saw him my heart sank. Oh. My. God. All the children in his classroom were quiet and speechless, as was his aide. I often wonder what they learned that day. I took Nicky to the bathroom and soothed him, while I gave him some pain meds. I hugged him and told him how much I loved him.Read More →

I don’t often talk about Connor in my blogs, but I will today, among other things I just need to get off my chest in the nicest way possible. 😛 I truly feel that the unsung heroes in the special need family are the siblings. Because Connor was born after Nicky, he never had to learn to accept EB, he just “knew” at a young age that Nicky was fragile and he naturally touched him gently even as a toddler. As he grew older he even started being his little servant, not minding at all when Nicky would ask him to get water or get him whatever he needed and never resented him. Connor is now 12, and for a while now he’s developed a love-hate relationship with his brother. So much so that if you ask Nicky if there is something or someone that makes him mad, the only answer,Read More →

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 please take a peek at the EBMRF (ebkids.org) and Debra (debra.org) websites to learn more about EB. Love & Light ~Silvia Post Views: 688Read More →

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: 777Read More →