Here’s the photos I promised yesterday when I updated Nicky’s CaringBridge Blog. Once again, I don’t post these lightly. I cringe a little. But there is truly no other way to show people what EB is. To understand EB. I want people to understand why Nicky is in so much pain. Photos is the only way to show the cruelty of of his condition… Recessive Dystrophic Epidermolysis Bullosa. What you see here is his left foot. His ankle (not shown) was one of the areas that was hurt as a baby and it’s basically always raw. The top of the foot here is very prone to being scratched and is almost always an open wound. The ‘white’ residue you see is what remains from our ‘concoction’ we use on his wounds to speed up optimum healing, made of a mixture of Desitin (or any 40% zinc diaper rash cream), DermaGran, Argan Oil,Read More →

Nicky’s having a rough time right now. Just when he was able to clear his throat by chocking up a piece of skin-not a pleasant thing, since now he has a wound in his throat that needs to heal-he is now dealing with a big piece of skin torn from going #2. It’s always something. I promise to do a blog at Caringbridge about our trip to Stanford sometime this week-I can never find the time. This is the only morning I have this whole week to do ‘stuff’ and all I did is take care of this blog while I helped Nicky doing various things. Which is why my poor book is written in 15 minutes here and 15 minutes there increments. It’s mind boggling. At this point, I will be happy if I am done by the end of summer/early fall, but I am not making any promises!Read More →

As many of you know, I don’t post photos of Nicky’s wounds on Facebook because they’ve been deleted many times because people “report’ them. I’ve been blocked and my account has even been suspended by my intent to simply show what EB is. People are disturbing and can be quite mean-to say the least. I don’t deal with that well. This is deeply, DEEPLY personal to me. My intent is not to shock or exploit, I would like nothing better to fade into obscurity and live my life as I like and see fit, but my child suffers daily and I can’t make it go away. My wish is to educate and spread the word that this is an awful condition and we need a cure, and we need it NOW. OK, so for those that are new to Nicky and his struggles, he is now 17 years old andRead More →

As per Nicky’s wishes, I am posting a few pictures I took a week ago of his left leg/foot. He’s been trying so hard to start walking again. Doctors and others have treated him as if it’s something so easy to walk, his EB team wants him to go to rehab, something he sooooo does not want to do (you can read about that at his CaringBridge Journal October entry). He wanted me to post these pictures to show what he’s dealing with. Let me give everyone a brief summary of what’s been going on with his legs and walking since he was born. I will try to keep it short, promise! Nicky didn’t start walking well on his own until he was 2 years old. I always marveled how his feet rarely got blisters, the skin looked different, tougher, for some reason. When he started going to school heRead More →

I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If I could, Nicky would for certain be better off today. No doubt about it. I can’t even begin to describe the horrible shape I was in when Nicky was born. I am writing about it in my book and I shake my head in disbelief. The various Insurance companies refused to cover bandages for over a decade. The bandages themselves were… sad. All we had to work with was Vaseline Gauze and rolled gauze. Wounds would get ‘stuck’ all the time. I washed and reused rolled gauze and survived with gauze donated to me by either other parents or fromRead More →

I just noticed that I haven’t posted any ‘wound pics’ of Nicky in a while, so I picked about 4 that I took in the past 2 months. For those that are unfamiliar with my son’s struggles, he was diagnosed at birth with EB-short for Epidermolysis Bullosa. When he was a mere month old he was further diagnosed via skin biopsy with a rather severe form of this condition called ‘Recessive Dystrophic’ (RDEB), one of the rarest, more severe and more lethal forms. How rare? How severe? How lethal? According to the latest statistics, about 3 babies in a million are born with RDEB. Both parents have to be ‘carriers’ (and do not have the condition) and as far as I know there is not ‘test’ to find out if you’re a carrier unless you already have a child with EB. RDEB is considered severe and eventually lethal mostly becauseRead More →

I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you can post ‘some’ photos, but there are limits. You can only post one per blog and it shrinks it down to a minute size. There is also a limit of 100 photos per blog. So if it’s a post that involves photos I do it here. Yes, I could do it on Facebook, but I refuse. Facebook has deleted way too many EB wound photos and even blocked me for doing so for me to trust them anymore. I wanted to show this photo of a blister that Nicky got recently on his leg (It did go all the wayRead 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 →