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 →

July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat, but Nicky has always been incredibly conscientious about using needles or scissors to pop his own blisters. I welcomed it and even liked it because he felt more comfortable doing it himself than having me do it, even as young as 2. Crazy? Not really, not for Nicky. He’s always displayed a maturity in certain things way beyond his age. He’s a little kid for other things too and it’s a nice give and take. Nicky ROCKS! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 519Read 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 →

What does having a “rare” member of the family means for our whole family? Rare means being scared. Nicky is 22 years old and I still check if he’s still breathing each and every morning. That magnitude of worry is overwhelming at times. I live his condition even though I do not have it. Our whole family does. Rare means that we have a lot of expenditures that the average family will never have. There will also be things, sometimes expensive things, that we purchase to try because we have hope in our hearts that something might make a difference. When it’s rare, nobody can say for sure what works and what doesn’t, and every patient is different. Rare means driving or flying far and wide to see Doctors that are at least familiar with the condition or meet other families. It’s disheartening when local Doctors, of any kind, refuseRead More →

What I am watching Let’s face it. There aren’t many historical shows that take place in my beloved Italy, so when I heard about the “MEDICI” on Netflix, I was all over it. Season 1 had the further intrigue of starring Dustin Hoffman and Richard Madden. Season 2 jumps a couple of generations. While season 1 told the story of Cosimo de Medici (Madden), season 2 revolves around his grandson, the famous Lorenzo il Magnifico, played handsomely by Daniel Sharman. I truly enjoyed the show, and to learn history this way has always been my favorite mode. I’ve often said that the way they teach history in school is the most boring way ever, and now what happened in the Duomo in the season finale, will forever be etched in my soul. It was filmed in the same place where it happened 500 years ago. How cool is that? FiveRead More →

Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping. After trips to his Doctor and the ER, tube changes etc, it became clear he either needed a new ‘hole” or something was wrong with his stomach. The tube was leaking, it was painful and Nicky could no longer stand to be fed through it. Any meds or food he had to take orally and that was a challenge for him. The only GI that Nicky has ever seen was at Stanford because they are the only Hospital familiar with his condition, so I made arrangements to take Nicky there for emergency surgery for his g-tube. The whole thing was a disaster. The day before the surgery Stanford pre-authRead More →

June 2000 – Nicky was just a little over 3 years old in this picture hugging Barney. He loved Barney and Teletubbies, Sesame Street and Blue’s Clues, he would watch them all day long, over and over again. At the time he could walk OK, albeit very carefully and slowly, and was a smart as a whip. When the school district came over a year later to see if he was ready for kindergarten he was able to recognize every animal they showed him, every letter, and count to 15. EB does not and has never affect his mind the least bit and if anything, since he is not easily distracted by other things because he can’t do other things, he became extremely smart about certain things, especially computer games. He’s no dummy to be sure. One thing that helps him as well is how calm and zen he isRead More →

Nicky’s dad sent me a text from the hospital where Nicky is recovered last night and told me that the case worker came in to tell him that the insurances are covering everything 100%. I almost fell flat on my face. These past couple of months have been truly hard on Nicky, and for our whole family as well. I lost count of all the Emergency Rooms and Doctors we have seen lately, all due to issues arising from his g-tube. We saw local Doctors, Doctors at CHLA and Stanford, all who did little to nothing for him. Finally, out of desperation, Nicky ended up at Lucile Salter Packard Children Hospital, in the care of a team. There is so much to say about that, and I will probably write a complete blog when all is resolved, but what sticks in my mind today is the issue of the insuranceRead More →