Infections Beware!

On our first trip to Stanford, back in August 1997, Dr. McGuire told us something that would forever be etched in my mind. He told us that the #1 enemy and the #1 reason for the demise for children with RDEB was infections. To say he scared me to death in one sentence it’s the understatement of the year. Not only he confirmed his RDEB diagnosis, but also mentioned the word ‘death’ and ‘infections’ in it. Fantastic.

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September 1999 – Nicky here was not quite 3 years old. I wrapped his arms and chest to prevent any injuries and this blister appeared in the only area I did not cover. As you can tell, these are monster blisters, if I didn’t wrap his body, he would have been like that everywhere…

This was about 17.5 years ago, at a time where the only information I could get about RDEB was from books, and they were vague. Children with RDEB were (and still are!) rare, and any Doctor I saw back then treated Nicky as if he was the long lost Unicorn, rumored to exist, but nobody had actually seen it. But Stanford was seeing them, just one day per month at that, and these Doctors knew what they were talking about. RDEB was a death sentence, that much was true, but on the same day we got to meet a young man whose RDEB went away during puberty. As I shook the hand of this now-healthy 19 year old man, who still had the scars to prove his diagnosis, I knew I had to have hope. Hope was gone and came back in one single day.

Even so, it seemed as if the only answer I got from them about getting rid of infections was ‘antibiotics’. It took me years to figure out to get rid of infections without using antibiotics, and while I am not exactly one to pat oneself in the back, I know I must be doing something right if we are sitting here, these many years later, and Nicky never had a serious infection, and in the past decade he’s been on oral antibiotics a handful of times. IV antibiotics never.

Antibiotics scared me to death. If overused they stop working, so I knew I had to find alternative methods to treat the infections. When Nicky was a baby our only recourse was to cover the wounds with vaseline gauze and put rolled gauze over them. That’s how the nurse showed us to do it. Right away though, I felt this method didn’t work quite well. Everything was getting stuck to the wound. We tried Telfa pads, but they only macerated the wound, almost inviting the infection in for a visit. I made do for a while this way, but no Doctor nor nurses had any tips on other products to use. Nicky was on topical and oral antibiotics often.

Then when Nicky was 2 years old he had a reconstructive hand surgery on his right hand. To put things into prospective, the hand was so stiff he would not even use it. He was only 2 years old!! I know many RDEB patients’ hands don’t start webbing or contracting or becoming stiff until much later, but this was our reality. We knew nothing about bandaging the hand, and even when we found out, insurance didn’t cover the cost of bandages and we couldn’t afford them. The hand surgeon, a gung-ho of a man I will never forget, introduced me to Xeroform and told me the amazing benefits of anti-microbial products in fighting infections. This gauze is particularly useful as a dressing because it is non-adherent, meaning it won’t stick to wounds, and it has antiseptic and antibacterial qualities that help keep wounds from becoming infected. He also told me that his body would not build a resistance to it like it could for antibiotics. From that moment on, any wound that looked even slightly infected I would cover with Xeroform and it would heal perfectly thereafter. Even one time when Nicky was 3 or 4 and Dr. McGuire swabbed the wound on his foot which proved to be infected, by the time I got the prescription for it once I got back home, the wound had healed thanks to the Xeroform. We also now use the silver products, which have similar agents, and I also spray Tea Tree Oil (it destroys bacteria) on them before applying them to the wound. I also love many other products, so I make my own concoction of Desitin or any 40% zinc cream (which helps the wound heal faster), Argan Oil (promotes healing), ulcer healing cream and Medihoney (also promotes healing).

Infections beware! I am on the job and you’re toast.

Perhaps it is because the condition is so rare that nobody could give me straight answers, but I want to encourage other parents never to take the word of a Doctor as final, you can disagree and you can make your own decisions and do your own research. Nicky of course, could not be his own advocate, I had to be that person for him to do the leg work and I gladly did it.

Of course par for the course was to make sure Nicky didn’t get the wounds to begin with, hence my wrapping techniques changed and evolved over the years. As he has gotten older, now Nicky has wounds that do not want to heal at all, but they are and we keep them infection free for the most part using these products and padding for protection. We all do what we must. Don’t let anyone tell you you’re doing it wrong. You know yourself and your child best. I often say I know my son’s skin better than I know my own, and I mean it!!!

Trust your guts!

Namaste~!

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The Best Holiday Gift You Can Give Me!

LosingAlexCover4sFrom one crazy overwhelmed mommy to another, I need your help!

The best holiday gift you can give me, in anticipation of my release of the book Butterfly Child – A Mother’s Journey (due out in early 2015) is a review of my book “Losing Alex”, which is a FREE download for the Kindle TODAY AND TOMORROW on Amazon :-) THANK YOU SO MUCH and HAPPY HOLIDAYS!!!

If you don’t have a Kindle, it’s OK, Free apps for your devices and even your computer available here–> https://www.amazon.com/gp/digital/fiona/kcp-landing-page?ie=UTF8&ref_=kcp_mac_mkt_lnd

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Ask Nicky!

10009859_10152858327287174_2914801347647718034_nI will be done with my book real soon, and then comes the hard part of selling it or self-publish it, we’ll see. However, in the new year, I want Nicky himself to be able to answer questions on a video I will make of him which I will then upload to YouTube. So, ASK away by leaving a message below on the facebook plug-in. Please be kind and sensitive, it’s all I ask. Nicky is truly a trooper, he wants everyone to know about his condition, so we’re gonna run with it. I am hoping to make several videos each perhaps tackling a different subject per se depending on what Nicky is comfortable talking about.

Remember, Nicky is 18 years old now, and he has the (Hallopeau Siemens-Severe Generalized) Recessive Dystrophic form of Epidermolysis Bullosa.

So… go at it… ASK NICKY!!!

Namaste!

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A Stroke of Luck

435390Somehow Thanksgiving gives me a different vibe since I found out early in 2012 that my husband’s family tree from his mom’s paternal side dates back to the Mayflower itself. I thought it was immensely cool to tell my son Connor that his 11th great-grandfather, Richard Warren, was one of the original pilgrims that celebrated Thanksgiving. He is a direct descendant. My husband says that probably millions of people are related to him, and he may be right, still, there is only one branch of his family that I was able to trace back that far, and the reason why that is, is because the family trees of important colonial families in american history are very well documented. I found tons of evidence of this connection, even though most are through females. All the other branches, I told my husband, either came to a dead end sometime in the early 1800s or go back to Europe centuries after the Mayflower arrived at Cape Cod. Most of his ancestors, as a matter of fact, came to the US sometime after the Civil War, and some went to Canada first. His mom’s maternal grandparents arrived to the US from Poland as recently as 1912. Still… if Connor is interested, I will be able to make him a member of the ‘Sons of American Revolution’ and of ‘Mayflower Descendants’ among others, since I was able to find ancestors that fought in every American War, including the Civil War (in the Union side, yeah!), and even has great-uncles that died at Gettysburg.

It’s quite a stroke of luck to find an ‘important’ or ‘famous’ ancestor because the family tree is already done for you, complete with documents and proof. To do so, however, sometimes you have to be able to trace your back tree several generations, usually back to the 1700s, as each generation you can go back, you can double the amount of people that are looking for the same person, possibly someone that is important today with any luck. A famous quote from Mark Twain humorously says: “Why waste your money looking up your family tree? Just go into politics and your opponents will do it for you.”

In fact, Richard Warren, who had seven children who survived childhood and grew up to have numerous children themselves, is supposedly the pilgrim with the most descendants, which include President Franklin D. Roosevelt (7th cousin 4x removed), President and General Ulysses S. Grant (6th cousin 5x removed), Orson Welles (9th cousin 2x removed), Laura Ingalls (8th cousin 3x removed), Richard Gere (10th cousin) and even, I hear, Julia Child and Joanne Woodward, even though I haven’t yet confirmed the connection from their tree to ours.

Of course, these cousin relationship, don’t amount to much. When you are looking at this far of a connection, while it’s cool that it’s there, the most important thing about it is that it helps you build your own tree backwards as genealogist do the hard work for you by doing these famous people’s trees. After all, as I said in my previous genealogical blog post, in the end, we are all cousins. Some people do not realize this, but going back too many generations, in the end, means nothing as we are all related to each other. You have two parents, four grandparents, eight great-grandparents, and so forth. By the time you’re back ten generations (around the mid 1600s or so), you’ve got 1,024 ancestors. Twenty generations (around the 1300s?) puts you over the million mark, and somewhere around thirty generations, your ancestors would seem to outnumber the world’s entire population at the time. Which means, of course, that we have many, many duplicate ancestors from one branch or the other. It’s because of this that nowadays I concentrate only on trying to go back to medieval times on all branches I can, and even that is a feat. Of the branches of my husband’s tree that go back to the various countries such as Holland, Germany, Poland etc, the only way to trace anything back would be to go to that country and do extensive research with the help of someone that can speak the language. That is never going to happen. The branches that go back to English speaking countries, such as Ireland or England,  I might be able to do something at some point. We’ll see. It won’t be anytime soon, as if I go to any churches and do local searches, it will be in Italy for my tree. I am still intent of finding some cool connection somewhere.

I know some may wonder ‘why do this’, and I have found, for me, that it gives me great pride and knowledge about myself and where I come from to know intimate stories about my ancestors. I am not only interested in dates, but the people they were, what they did and how they lived. To know where I am going, I need to know where I come from.

“In all of us there is a hunger, marrow deep, to know our heritage – to know who we are and where we came from. Without this enriching knowledge, there is a hollow yearning. No matter what our attainments in life, there is still a vacuum, an emptiness, and the most disquieting loneliness.” — Alex Haley, Roots

Love & Light,

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Thanksgiving Blues and Hopes

Yesterday was a particularly tough day for Nicky, and I don’t know if I am getting old or what, but I am still tired from it. We woke up at 5am, left by 6am, drove into Los Angeles during the morning rush hour (never a good thing) which made our trip twice as long as it should have been (3 hours instead of 1.5), then proceeded in having Nicky do hydrotherapy. For those unfamiliar with this, it’s just a pre-medicated ‘good’ bath. A bath where nurses inspect and clean every wound and where the Doctor comes in, checks things out, swabs some wounds and then I completely re-bandage him. Then we drive back home in a rush for an hour and a half so I can pick Connor up from school at 2:15pm. When I got home I took a nap, and Nicky slept the entire drive home. He was beyond exhausted and is in a daze even today. To do an entire body bandage change is beyond energy draining.

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At times I think back when he was little (not quite 4 months old in this pic above) and it seems to me right now how it was so easy in comparison because of his small size, yet at the time EB was so fresh and overwhelming I felt nearing a nervous breakdown any minute. Time and patience have brought me a long way. I have a sense of peace about things that is hard to explain sometimes.

Today at Nicky’s school it became apparent to me that Nicky will most likely not graduate High School this coming May. He is already a year behind his peers, not that it matters. He only has to take 2 English classes and 2.5 electives, but the ‘Senior’ english class he has to take is truly overwhelming for me to even think about on how to help him, let alone him being done real soon with it. He will be done with the curriculum well before May 2016, as a matter of fact, he will probably be done by next fall, but that means he cannot participate in the graduation ceremony until May 2016, as they only have one ceremony per year, no matter ‘when’ they are done with the curriculum.

Nicky was not happy with it, and that’s of course understandable, but then I reminded him of the ‘dream’ I had, the dream I actually have had for him that I truly believe in. For years now, many years, I had this conviction that Nicky would ‘walk up’ the podium to accept his Diploma. It’s not a nighttime dream, it’s basically a conviction, a vision, call it whatever you like it, all I know is that it’s a certainty in my mind. If he was to graduate this coming May, he would not be able to walk up. The first phase of the skin grafts have to be on a flat area, which he wants on his forearms. But by the time they start phase 2 next fall, they will be able to graft larger areas, including bendable areas, like his hands, feet, knees etc. Nicky’s first wish was for his feet and knees, in that order. So, of course, by May 2016, he WILL be able to walk up the podium to accept his Diploma!

Thinking positive, and most of all, Believing. It’s the Law of Attraction, right? I believe that whatever I want, I really want, WILL happen and the universe, the source, God, whatever you want to call it, will conspire to make it happen somehow. Nicky got a big, huge grin on his face. Blues turned into Hope.

Believe!

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Nicky Meets Nick!

First of all, I must apologize for not posting more often. I love to write and writing is my therapy, and I do have a lot to talk about. Lately however, I am knee deep and almost done writing my book Butterfly Child and it’s been quite emotional to say the least. Writing a biography is a risky and draining endeavor. In a way I cannot wait to be done, just so I can put everything behind me and move forward. I want this book to be able to help people and I can tell that getting everything on paper has been enormously therapeutic. I’ve gained much prospective by reflecting on the past, reflecting on my life, my mistakes and my growth.

I’ve also been working on my house and my mantra right now is… edit, edit, edit! I’ve thrown away all kinds of old magazines, broken toys and broken furniture we for some reason were ‘saving’. Ugh. I also gave away all sorts of old toys, clothes and God knows what else as a huge donation to the Vietnam Vets of America. I am not even close to be done. I want to get everything together before I start working again. We’ll see how it goes.

As if that’s not enough, I took a day off from my book writing and house cleaning to revamp my ebinfoworld.com website today and I am very happy with the results. I am always doing something I guess. In the new year I will restart posting stuff there as well since I feel I’ve been neglecting it a bit.

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OK, so this amazing man, Nick Vujicic, saw my Nicky on TV several months ago and when Nicky had his ‘Pastry Chef’ day at Carrara Pastries, he sent over an assortment of books and DVDs and let us know he wanted to meet Nicky. For those that are unfamiliar with Nick Vujicic, he is an Australian Christian evangelist and motivational speaker born with Tetra-amelia syndrome, a rare disorder characterized by the absence of all four limbs. As a child, he struggled mentally and emotionally as well as physically, but eventually came to terms with his disability and, at the age of seventeen, started his own non-profit organization Life Without Limbs. Vujicic presents motivational speeches worldwide which focus on life with a disability, hope and finding meaning in life.

Nicky was unfamiliar with Nick when presented with the books and DVDs from Nick’s caregiver, but I had to do a double-take. Just the day before I had picked up his biography at the Good Will store “Life Without Limits” and the collection of books he gave us did not included that one. I was amazed. I showed Nicky a couple of his videos and he really enjoyed them, he loved his attitude and his mantra of wanting to be happy, so I kept in touch with his manager to see where we could meet him, which ended up being in an event in Ventura. For those that told me to make sure to give him a hug, please know, I gave him a hug!!!! :-)

I will try to post more often, not just EB stuff, but random things as well, since as a caregiver and mom, while a lot of my life revolves around EB, it’s not all I am interested in. I have another genealogy blog in mind and other things as well.

Nicky will be 18 in 9 days… can you believe? My next post will be of his birthday for sure.

Much love and light… Happy Turkey day!

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