I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay. He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself. Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. HeRead More →

Something happened when I tried to share my latest post from this website on Facebook on July 10th… Hmmm… really? People on Facebook have reported this website as abusive? When I further tried to copy and paste a link to my blog on Facebook I got this message: I requested many reviews, complained, sent feedback, asked, wondered, you name it. I got no response at all. I also read through the Community Standards and there is absolutely NOTHING in there about having “wound pictures” on my blog (not on Facebook, mind you, on my BLOG) that are deemed spam or are truly that graphic. There is no nudity in these pics, just wounds on arms or legs. This reminds me of the time a few years ago when I used to post my son’s wound photos On FB itself and I got put in Facebook jail for it. That postRead More →

I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles. I can’t believe it took 6 months for our life to get back to normal, which explains why my blog became silent. It’s not that I had nothing to say, au contraire! When you spend oodles of times and endless nights in the hospital, you become this zombie that is hard to describe. I did start a diary again and that’s what kept me sane. It all started late last fall. Nicky likes to tell the story that it started back in 2017 when I accidentally ripped his tube out, balloon and all, while helping him go to the bathroom, but the truth is that heRead More →

This year, so far, has been horrible. I try to do fun things and distract myself as much as I can, but the undeniable truth is there, always there. Nicky is in pain. Always. At this point we’re waiting for a sleuth of appointments with various specialists (GI, Dermatologist, hydrotherapy etc) and hopefully as soon as possible, a surgery for a new ‘hole’, as the old g-tube hole is absolutely 1 million percent hopeless. It bleeds, and it doesn’t want to heal or close on its own. This has been going on since early January, so seeing Nicky dealing with this for 4 months, 2 hospitalizations and 2 surgeries later, I honestly feel as I want to just disappear. I am so tired. I want to hide myself in a little corner and cry. But, I cannot. I need to be strong for Nicky, and when he’s with his dadRead More →

Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him. He spends his day at the computer chair, so I grab the bandages and I sit next to him while I change the arm, leg, or whatever. He’s weak because he’s lost so much weight, but also because moving is painful. He’s been moving less and less over the years. When you don’t want to move much, it affects your joints and your muscles. The fact that his feet are mega-sensitive and he can’t really walk on them doesn’t help any. When he does walk he walks (with the help of his walker) on his tippy-toes, which are extremely well padded. An “outRead More →

I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest of them get me over the edge. That’s where my Italian psychotic bitch shows up, and let me tell you, I love her. Of course, being such a rare disease even in a large population area, there are very few people I can rely on, because there is certainly nobody around here with experience with EB. Normally the best resources are other parents, I have at least one mom on speed-dial who is also my best friend. Even with such support, Epidermolysis Bullosa is very different with each patient, and the care has to be customized through a lot ofRead More →

I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days later. Seven months after that unthinkable loss I miscarried a baby girl at 8 weeks. Thirteen months after that I finally held Nicky. He was a bundle of warmth that felt like heaven. After that initial bliss we found out he had EB, and everything else was a blur. For the longest time I felt lower than low. I am not sure I felt ashamed per se, but I was definitely distressed about my story, I felt distraught, even tormented by the memories of holding my dead newborn and surely poking blisters on my precious new baby did not help myRead More →