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 →

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 →

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 →

Once again I am forced to post these pics on my blog instead of, say, Facebook or caringbridge due to Facebook’s constantly deleting my wound pics and caringbridge not really giving me much space or a way to clearly display these. The detailed blog about the cast removal is here: http://www.caringbridge.org/visit/nickyz/journal Below is the hand carefully re-wrapped by the PT ladies after the cast was removed. He has a splint under to keep the wrist straight and the hand open.   Below is the hand unwrapped. The thumb may not look like it’s way out, but it’s quite a bit more out than it was, Nicky is absolutely thrilled. The index finger is not where we were hoping, but it’s better than it was and we’ll do physical therapy to pull it back more while the skin on it is still “soft” from surgery. Will explain more on Caringbridge on what that means…   ThisRead More →

So, silly me… I wanted to have a ton of pre-surgery pics of Nicky’s hand, but I messed up. Nicky wanted his ‘left’ hand done so I took several photos of that hand, but then two weeks ago he changed his mind and decided to do the right one and I never did take good, proper pics of it. The right hand was in slighter worse shape than the left one. While the left hand still has a mostly straight index finger, the right hand did not. Beside that, both hands were in similar shape, as the thumb was webbed toward the palm of the hand and the pinky completely webbed in the hand, so much one could not see it with the naked eye. I wrote a BLOG on Caringbridge http://www.caringbridge.org/visit/nickyz/journal about the whys and the hows of the surgery itself with a bit of history. Since I am limitedRead More →

When Nicky was born, 15 years ago, the Internet was not like what it is today. I know, it’s crazy to think about it, right? I used to browse ‘usenet newsgroups’ and to belong to an email group of any sort you had to send an email to a listserve to join or leave a group. There were very few websites (comparitively speaking) and not many had the internet to begin with anyway. So… it will be of little surprise when I tell you I could not find a single soul with EB or that had a child with EB. Nobody. The Doctor ‘could not tell me’ of other patients because of patient/doctor confidentiality. I was going out of my mind. I tried to gather as much info about EB as I could, but I could find very little. I knew about the scarring. I knew about the wounds needing moisture to healRead More →