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 fromRead 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 onlyRead 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.Read 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 NickyRead 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, butRead 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 surgeryRead More →