August 2013 – Nicky right after he woke up from his hand surgery at CHLA with his dad. It always amazed me how strong he is. He wanted this surgery and it ended up to be really good for him in the long run as well. We use a splint to keep the thumb “out” at night and even after 3.5 years using that with the wrapping he lost very minimal web space. Of course his hands are far from normal looking, but he can use them, which it’s huge in my book. He truly cherishes his hands, so we’ll keep doing what we’re doing! More of Nicky’s story in the book… Thank you so much for your support!! http://butterflychildamothersjourney.com Love & Light,   Post Views: 1,093Read More →

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 →

I updated my Caringbridge Blog today (here’s the link–> http://www.caringbridge.org/visit/nickyz/journal/view/id/554ba814f02065dc3614f506) and I also posted a photo on my Butterfly Child Book Facebook Page and I talk about the pain and suffering that Nicky endures. It’s not easy. EB sucks. It’s been two years now since I had to start giving Nicky pain meds basically 24/7 and to me it’s a shock he didn’t need them all day before. He always needed them for bandage changes, but never at any other time. I always asked him what was his pain threshold, and as I write in the book, sometimes I am convinced his body is reacting differently about pain than a regular person, simply because his body is so used to it and has dealt with it since birth. Even when his body wasn’t so ravaged, if I had had the wounds he had, I would have been in hell. Now? IRead More →

I wanted to share this picture of Nicky’s right hand a year post surgery. It’s doing fantastic! We do wrap the hand religiously and use the splint every night to keep the opening between the thumb and index finger intact, and while we lost a bit on the pinky, it is still ‘straight’, which means it does not pull the wrist inside, which is really great regardless. Even if it gets webbed again, as long as it stays straight Nicky does not mind, it’s the thumb which is most important for us to keep open. I wanted to share this pic of the same hand 13 years ago (below), 2002 to be exact, just before the surgery he had back then. He was almost 6 when he had that surgery, and it was the last time he had surgery on that hand until last year. Without the wrapping and surgeries, asRead More →

Hello friends, family and everyone interested in seeing how Nicky’s left hand surgery went! I finally have time to do this blog post… Here Goes! This photo below is a photo of his hand BEFORE surgery. It shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. Here’s the hand POST surgery, he has a pinky now! Yey!!! The reason why Nicky wanted his pinky ‘fished out’ was not because he needed it for anything, but the problem with it being webbed inside the hand was that it made it impossible for him to move his wrist much without a considerable amount of pain. OK, now, on to his thumb: Below is a picture of his thumb BEFORE surgery. His thumb was very much ‘in’ the palm, preventing him to use his hand to pick up things or play video-games well, which is his motivation forRead More →

I just wanted to make a quick post about Nicky’s left hand and show a couple of pictures.             This is Nicky’s left hand. This particular photo shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. The index, middle and ring finger are a bit curled, but they function well and he wants nothing done to them, they’ve been holding pretty much this position since the last surgery in 2002 thanks to the wrapping.   This second photo to the left shows his thumb, which is very ‘in’ the palm, preventing him to use his hand to pick up things or play videogames well, which is his motivation for doing the surgery to begin with. Believe me when I tell you, this is HIS decision and not mine. I don’t particularly enjoy seeing him in more pain, butRead More →