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If there was one thing I’ve been criticized endlessly for, and for which I’ve stood my ground over and over again, is my need to bandage Nicky. I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to speak, because, once again, I was attacked for it, merciless. I am not sure why people I do not know, who very obviously (having met them or seen their pics) are dealing with a different subtype or subform of EB feel the need to go to the extent of calling me a “bad”, “horrific” or a “crazy mother” and why they feel the need to “tell me what to do”, as if, after 19 years of inspecting every inch of Nicky’s skin and trying all sorts of things to improve things, apparently I must be an idiot in their view. When I tellRead More →

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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 →

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Since this is “EB Awareness Week” (#EBawarenessweek) I wanted to write a short blog about what is like to have a child with Recessive Dystrophic Epidermolysis Bullosa. For me, it means having to inspect every inch of my son’s skin every night. It means taking a sterile needle to lance every new blister and drain them so they don’t get any larger. It means deciding how to bandage each wound, because they all need different ointments and bandages depending on how far along in the healing process they are. It means having a house full of mass quantities of bandages and creams, all of which will only last a month. It means having to help my son get from point A to point B in the house as he cannot walk. Because he’s too heavy, I cannot carry him, and even if I did, the pressure from my hands wouldRead More →

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For EB Awareness week this year I want to take a moment and give everyone a rundown of the horrible side effect of RDEB and the mittening of the hands and how I found out about it and how we dealt with it. Of course hindsight is 20/20 as with everything else with EB. When Nicky was born the information I was given and I found did not mention this particular problem. The internet in 1996 was worthless. The only thing I was mildly aware of was that the hands “could” web. And by “web” I thought the fingers could web together or develop skin between like a duck’s feet. I know… crazy, but having no contact with any other EB family or Doctors that knew anything concrete about EB, one is left to their own devices and imagination. It wasn’t until we were finally able to visit the mainRead More →

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I am slowly adding all the episodes of “Butterfly Talk” on YouTube as time allows for your listening and viewing pleasure. Butterfly Talk is a monthly radio show/podcast I run myself. The episodes not only are available on the Blog Talk Radio website but also on iTunes. Putting them on YouTube expands the audience, the more awareness the better! This was the first “official” episode with my good friend Lorraine Montello as my first guest. Her son Garrett has RDEB and is 18 years old. She also started a business with her son called “Montello Fine Foods“. Happy Listening!! Love & Light, Post Views: 1,065Read More →

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This is part 6 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. April 2000 – Nicky is 3.5 years old here. Wrapping the hands had become second nature. While it didn’t 100% stop the webbing and contracting of the hands (mostly because of all the scarring that happened BEFORE I started wrapping the fingers), it did slow it down considerably. I was talking to Nicky last night about wrapping the hands and he toldRead More →

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One would think that after 18+ years, nothing about EB would surprise me anymore. Well, it does. EB still manages to shock us at what it can do and how it manifests itself. Last night as I was taking off a bandage from Nicky’s upper left arm, it looked as if an infection (pus) was setting in a wound-but not in the usual way. Normally the pus (I know, yuk, but EB can be just majorly yucky) fills up a blister, or it colonizes a wound, but this time it was different. It looked like it managed to infiltrate itself way under the skin somewhere, so the pus had to be “squeezed out” of this little hole. WTF? Nicky wasn’t even phased. It hurt, yes, but he reminded me how it’s the same way on his left foot. What’s happening there is also quite bizarre. It’s hard to see inRead More →

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On our first trip to Stanford, back in August 1997, Dr. McGuire told us something that would forever be etched in my mind. He told us that the #1 enemy and the #1 reason for the demise for children with RDEB was infections. To say he scared me to death in one sentence it’s the understatement of the year. Not only he confirmed his RDEB diagnosis, but also mentioned the word ‘death’ and ‘infections’ in it. Fantastic. This was about 17.5 years ago, at a time where the only information I could get about RDEB was from books, and they were vague. Children with RDEB were (and still are!) rare, and any Doctor I saw back then treated Nicky as if he was the long lost Unicorn, rumored to exist, but nobody had actually seen it. But Stanford was seeing them, just one day per month at that, and theseRead More →

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I will be done with my book real soon, and then comes the hard part of selling it or self-publish it, we’ll see. However, in the new year, I want Nicky himself to be able to answer questions on a video I will make of him which I will then upload to YouTube. So, ASK away by leaving a message below on the facebook plug-in. Please be kind and sensitive, it’s all I ask. Nicky is truly a trooper, he wants everyone to know about his condition, so we’re gonna run with it. I am hoping to make several videos each perhaps tackling a different subject per se depending on what Nicky is comfortable talking about. Remember, Nicky is 18 years old now, and he has the (Hallopeau Siemens-Severe Generalized) Recessive Dystrophic form of Epidermolysis Bullosa. So… go at it… ASK NICKY!!! Namaste! Post Views: 976Read More →