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I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hitting reality, love without measure and life with EB. I wonder how thick this book going to get as I keep remembering things and add life stories beyond 2002. I love to write, it’s almost  part of me to be able to express myself this way, I truly enjoy it, however at times trying to describe some events and the knee jerking reality smacking you in the face is not exactlyRead More →

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If you’ve ever driven on Interstate 5 North from Los Angeles towards San Francisco you surely passed something you could neither miss with your eyes nor your nose. As you approach the town of Coalinga you will be hard pressed to miss the thousands of cattle right off the freeway. Cows and cows, as far as the eye can see. I always thought this sight deserved a photograph (being the avid photographer that I am) and while I’ve stopped on the side of the highway to take photos before, I always meant to that that ‘exit’ to take a closer look but never did. I either missed it, or forgot about it, or didn’t have the camera… This past year I had to take this drive 7 times either taking my son to Stanford or to Camp, and just this past week, on January 19th, as I was driving upRead More →

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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 →

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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 →

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It’s true with anything, anywhere in the world. You give something for free for people in need and some will take absolute and complete advantage of it, making someone else suffer in turn because they are taking something away from those who desperately need it. But what do we do, take this advantage away, make stricter rules or close our eyes? Surely the rotten tomatoes of our world needs to pay consequences, but do they? Never in my experience. I always found it perplexing how something designed to specifically help children like my son, who suffer horribly every day of their lives, all of a sudden becomes ‘not available’. It’s everywhere in sight. From that healthy person taking the last handicapped parking spot I badly need to get my son out of the car, to the lady at the amusement park telling us that my son has to wait inRead More →

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Last year I started watching a TV show called ‘Celebrity Ghost Stories’. I know what you’re thinking, especially the skeptics, but even if only 1% of these stories are true, it’s still a compelling argument for the paranormal. The most touching story I saw belonged to an Italian-American actor called Enrico Colantoni. I teared up watching it. This show, which became a favorite of my Connor as well, gives credibility to a perplexing chain of events I briefly talked about in my other blog a couple of years ago (http://ebmom.blogspot.com/2010/01/cant-help-but-wonder.html). Sometimes the answer to the question regarding these events ‘Am I crazy?’ is a resounding YES. Others I wonder why people seem perplexed when I retell the story. It’s not like I am inventing things. I could not ‘make up’ this stuff if I tried. So… here’s the story! After I moved to a one bedroom apartment with Nicky (thenRead More →

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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 →

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This past spring I did something I’ve been wanting to do for a LONG time. I bought the software and the plugs needed so I could transfer all my old VHS tapes and Hi-8 Tapes from my camcorder to my PC so I could make DVDs out of it. I had bought my camera back in 1992, but I had borrowed my BIL’s camera (a cameraman by trade, who even worked for several TV stations) well before then, so I had several videos from the late 80s and early 90s. I didn’t realize this decision would make such impact on Nicky. To be able to see mom and dad before he was born and see videos of himself as a baby and toddler truly gave him a glimpse of things he was unaware of. I have a LONG way to go when it comes to transferring all the videos, butRead More →