Il Paradiso

NEW BLOG

2011-11-09T18:32:00.000-08:00

Several months ago... OK, almost a year ago, I revamped my silviaskingdom.com website and substituted the entire content with a BLOG style website. It was a crazy move, but one that was way overdue. While most of the content will most likely never again reappear (content included old pics and old updates on the kids, and also American Idol & B&B recaps, wallpapers, icons and incredimail letters), I wanted to switch the reason for the website to a more personal one. I have a different blog at Caringbridge for Nicky's updates and my blog @ sleepingangel.com is for my graphic design, so I can concentrate on my books and my EB awareness ventures on my personal one.

http://blog.silviaskingdom.com/

Thank you!
~Silvia

And that's how it is...

2011-05-29T19:13:00.000-07:00

Ever since losing Alex at full term back in the dark ages of 1995, I've been looking for stories of other bereaved parents who might have shared their stories in books. I became particularly interested in celebrities that have had losses, but much to my dismay, none had written autobiographies. I purchased the book of the biography of Jackie Kennedy once because I knew she lost a baby at birth-the same year her husband was assassinated, but I didn't realize this: there is a BIG difference between biographies written by a third person and autobiographies, written by the person him or herself. This biography of Jackie was great at giving 'dates' and what happened and what not, but did not really delve into the feelings, on what happened to her psyche. How in the world did she cope when within six months she lost her child AND her husband? This is the reason why I am obsessed with biographies, I've always been interested in finding out how people coped when life gave them lemons. Gigantic lemons.

Just recently, as I am writing Alex's story for the book I am writing about Nicky's life, I did more research for celeb's autobiographies to see if I could find some gems previously unreleased. While I did find a few released since 1995 of other moms who speak quite generously and eloquently about it (and I read those books in record time!), still, celebs who have had stillbirths are rare, but there are a few that I WISH would share their experiences. I know, how selfish of me! LOL. Probably the most notable in recent years has been Katie Segal, whose pregnancy had been written in her show Married with Children, and when she lost the baby they had to pretend Peg's pregnancy had just been a "dream". Common Katie, we want to know more. Another famous celeb who lost a child at the 8th month of pregnancy was Keanu Reeves' girlfriend Jennifer, and Jennifer herself died in a car accident two years later. I am dying to hear a father's point of view. I did get a morsel of his feelings in an article I found online:

“Grief changes shape, but it never ends. People have a misconception that you can deal with it and say, ‘It’s gone, and I’m better.’ They’re wrong.

“When the people you love are gone, you’re alone. I miss being a part of their lives and them being part of mine. I wonder what the present would be like if they were here—what we might have done together. I miss all the great things that will never be.

“Damn it! It’s not fair! It’s absurd. All you can do is hope that grief will be transformed and, instead of feeling pain and confusion, you will be together again in memory, that there will be solace and pleasure there, not just loss.”

“Much of my appreciation of life has come through loss,” he said. “Life is precious. It’s worthwhile.”

Common Keanu. Autobiography please.

Did Oprah write an autobiography? There are so many out there about her, but not sure which one she wrote or which one she speaks about the baby she lost.

So... in the end I did find a couple of books, autobiographies of "celebs" (although I didn't exactly know who they were prior to my research, but it's okay) that speak about their losses. Here they are:

Kym Marsh is probably unknown to most people in the US, but she's probably a well known name to the Brits. According to wikipedia, she first came into the public eye in 2001 after appearing as a contestant on ITV's talent show Popstars where she made the final line-up for the band Hear'Say along with four others. Marsh left the group in 2002 and now plays Michelle Connor in the long-running soap opera Coronation Street. On 12 February 2009, Marsh released a statement announcing that her son Archie had been born 18 weeks early on 11 February, and had died moments after birth. Her book recounts her difficult childhood, her raise to stardom and the death of her son.

Katherine Graham was an American publisher. She led her family's newspaper, The Washington Post, for more than two decades. She has been widely described as one of the most powerful American women of the twentieth century. Katharine had to endure the stillbirth of her first child, and several subsequent miscarriages.

According to a reviewer, she does speak of her losses in her memoir, and I do hope she speaks candidly about it, she does have 642 pages to do it! This book is next on my list to get.

This is the book I am reading right now, "Life Touches Life" by Lorraine Ash. I love it because her story is eerily similar to mine. Gives me the chills just to read it.

Another book I just finished is the one below from Elizabeth McCracken, 'An Exact Replica of a Figment of My Imagination". Very neat title, the story though is hard to follow at times, but it's okay, it jumps around from the pregnancy she lost at full term (once again, very similar situation as mine) to the pregnancy a year later where she gives birth to a healthy baby.

I have a few more in my 'wish list' but I will need to read more about them before I get them. I have very little precious time to read and I alternate these grief books with autobiographies just as not to get too depressed, but my next autobiography is

Mackenzie Phillips, so I am not sure how cheerful that book is going to be!

One more note about grief in general before I end this. For years now, since Alex died, people have told me 'God does not give you more than you can handle'. Please everyone, stop saying that to me or to anyone. It's simply not true. After Alex died I remember going to the newslist alt.support.grief and I read TWO posts at a couple of months distance where mothers whose children had died committed suicide to go be with their babies. God gave them more than they could handle. I stopped reading posts there after that because I simply could not handle it. There is also a story in my family that deserves to be told and I recount the details in my book, but I will mention part of it here just to help people understand what I am trying to say.

My grandpa had an older sister, Maria Corradin, who married a wealthy farmer and they had 4 boys. In 1919 the whole family was infected by the 'spanish flu' (which killed millions around the world) and in a matter of WEEKS my great-aunt Maria lost her husband and all 4 of her boys. When she came home after the last funeral of her oldest son, she went 'numb'. I researched this and what I surmise is that she either had a psychological shock or suffered an acute post-stress disorder of some sort and while she could do the "basics" of eating, dressing etc, she was unresponsive otherwise. She lived well into her 90s and died in the late 1970s, so she lived 55+ years in a rest home, unable to fetch for herself. God did give her more than she could handle.

I understand WHY people say that, they want to give people some imaginary strenght, ohhh 'you can handle it, chin up', but while I am certain it's meant to encourage and it's given with the best of intentions, it's almost a dismissive statement. I love THIS BLOGGER for example, who explains what's really in the bible.

I think a better way to express the sentiment that people are trying to get across with this is something more along the lines of, "God won't abandon you in the hard times" or "God is still with you." Really though, even better is just to let someone know you are there for them, offer your help, and listen to them. The people I have appreciated the most in hard times have been the ones who said the least, usually. They were just there for me.

Hugs,

Silvia

Random thoughts...

2011-05-03T18:00:00.000-07:00

I should be studying for my Math Test tomorrow, but instead I am sitting here with too many thoughts in my head to concentrate, so maybe if I write them down I can make room for math in my brain? Ha Ha. Nobody reads this blog anyway, so, whatever, it's a good brain excercise.

My little Precious Prius (which I love, yes, Nick, I do, thank you) had a little problem with the battery (long story... moral is, if you have a hybrid, make sure all doors are always tightly closed! One of the doors got left "barely" ajar which completely drained the battery-sigh) and I got a chance to have a nice chat with the tow truck driver, which gave me a ride to the dealership, and to this nice man who gave me a ride back home and then a ride back to the dealership to pick up my car when it was ready today and I realized something. I have nobody to talk to. Seriously. Both the tow-truck guy and the driver for the dealer were so engrossed about my story about Nicky's EB and Greg's strokes and everything else in between, I mean, am I THIS lonely to struck conversations and tell my life story to complete strangers? I remember when I used to work at Babbage's and certain customers would come in very often just to have a chat with me and I often thought they were probably very lonely people. One particular customer took me out to Sushi after work even just to be able to talk to me more about his problems getting his new wife back to the US from China and more about his life story. Have I become one of these people? Hmmm... I think so. I am not alone, but I am lonely, that's for sure. Oh well. That is what I get for having lived in two different countries and in 4 states, I have friends everywhere, but not here, and I do mean friends you can go out with for lunch or for a drink. I was telling mom I have no shortage of friends per se, it's just that NONE of them are HERE. It's okay, I'll muddle through, not complaining at all, just stating matters.

I found that lately when I get mad about something, I go write in my book. It's extremely self-therapeutic. If I get mad is because apparently it strikes a nerve, which brings up a memory in my life, and so it goes. Speaking of which.. I cannot WAIT to talk to my dad about this Osama Bin Laden deal and get his prospective on things. My dad, which I respect and adore more than words can say, was a 15 years old teenager in Italy when World War 2 ended and Hitler committed suicide and Mussolini was executed in 1945. I am quite appalled to be honest when I hear people comparing and equating Al-Quaida's happiness when the twin towers got hit with Americans being happy when they heard Osama was killed. Frankly, I don't see the comparison at all. It's like comparing the Japanese being happy when they bombed Pearl Harbor and everyone being happy when Hitler died. The two 'happiness' can't truly be compared because one is a happiness out of pure evil, while the other is from eradicating evil. I really want to ask my dad if anyone in Italy was 'sad' that Mussolini died... I get a feeling he'll have a good, hearty laugh!! My dad is uber-political, and I find it interesting how, even though I never even knew what 'party' he belonged to (and in Italy in the 70s they had 30 or so parties!!!) when we compared notes in the late 90s I was definitely my father's daughter. Then again, having been born and raised in Europe does bring me a certain prospective on things that cannot be easily explained, just lived.

Okay, I think my head is clearer now. Bring on Factoring Out Equations! Ick.

150+ Free American Idol Incredimail Letters!

2011-04-14T18:56:00.000-07:00

I posted a link on my personal website on where to download all the Incredimail Letters I made for American Idol from 2004 to 2010 ...

CLICK HERE 4 DOWNLOAD LINK!

I counted 153 roughly. These letters were on that site but since the revamp I had to take them down, so this is the easiest way for me to make them available once again to everyone. The image I made shows a bit of the preview of my work.

All my other Incredimail letters (quite a few I made from 2004 to 2010) are on my website at the following URL: http://sleepingangel.com/graphics_im.htm

The only ‘Thanks’ I ask is if you follow and LIKE one of my two Facebook pages, the first one EB Info World deals with news, awareness and support for my son’s disorder, Epidermolysis Bullosa. The second one is for my AVON business, if you don’t have an AVON lady yet, please let me be yours! I had to quit my job to take care of my family full time and every penny helps. By liking my AVON page you will be the first to find out about new deals and freebies.

THANK YOU and ENJOY!

Some of my photography...

2011-03-31T10:17:00.001-07:00

ebmom1's photostream on Flickr.

Will upload much more soon!

Silvia <3

Man, I feel old!

2011-03-20T12:41:00.000-07:00

Okay, sure, my 47th birthday is just around the corner (yes, I've never been one to hide her age, bring it on!), but I sure never expected to see things I own, or that I remember clearly, in a museum.

But, I digress. I wrote about our trip to Stanford in my blog at Caringbridge (you can read it here http://www.caringbridge.org/visit/nickyz ) and how we were all of a sudden left with a whole day to do... nothing because they cancelled Nicky's surgery. If it would have been a great sunny day, I would have taken Nicky to San Francisco or the beach but it was raining cats and dogs so I felt doing something indoors would be more appropriate. I googled museum on my iPhone and the Computer History Museum popped up, just a few miles from the hotel, and it looked like it had a video-game section, so Nicky was sold. When we got there the clerk told us that they were having some 'glitches' today and the entrance would be free. Glitches? I noticed none of the monitors were working, monitors that usually have some mini-documentaries playing throughout the entire exhibit so I was a little bummed, but the glitches were fixed within the hour, so then we tracked back. What a cool place!!!

This gadget here caught my attention. It was a programmable calculator made in 1965 by a company called... drum roll please... OLIVETTI! Yes, Olivetti is the 'main' company in my hometown of Ivrea in Italy, my dad worked for Olivetti for 50 years! This calculator was the first of its kind because it had the ability to store programs and data on magnetic strip cards. It was the very first calculator that was also a computer of sorts, it sold 40,000 units! I need to ask my dad if he remembers it when I talk to him today.

You will never guess what this silly looking thing is. In 1969 Neiman-Marcus offered this 'kitchen computer' in their Christmas catalog! For $10,600 you got this computer, a cookbook, an apron, and a two-week programming course. It had a built-in cutting board and it came with a Honeywell 316 minicomputer. The interface consisted in binary switches and lights. None were sold, LMAO!

In the early to mid '90s I was a manager for a computer software and videogame store called Babbage's (only a few stores survived the merges) and I remember having all of these software packages on my shelves and explaining to people what 'Windows' was. Isn't that crazy?

The history of PAC-MAN. Nicky basically "parked" in this section of the museum, they had areas that explained the histories of some of the games and they had in display every videogame system ever made! They even had games you could actually PLAY, so Nicky loved it. While he soaked all of this up I roamed around the museum looking at what he considered 'boring' stuff such as the computers made for NASA, Mainframes, old calculators, old punchcard machines and tons of other amazing stuff. I was completely fascinated to look at these old looking things and calculators as big as a room. I actually spent quite a bit of time in the 'Internet' area. They had a slideshow of website's main pages as they appeared in the 90s. Sad part is, I remember all of them! Sigh.

In the gift-shop I spotted Computer Engineer Barbie. LMAO!

Later at Target I spotted "Kitty Care Vet" Barbie and "Pizza Chef" Barbie. Didn't realize they were making all there Barbies nowadays! I have boys so I am completely out of the Barbie loop I guess!

On our way back home, passing through Gilroy, I stopped at a little Farmer's Market to get some fruit and I asked Nicky if he wanted to try Garlilc Ice Cream. Uhhh... no. Even I passed. I will try anything but even I had to pass on this one!!

The last stop was at Casa De Fruta, we love this place. I took this pic here, don't they look delish?

Photography and Photoshopping is really helping me right now so I am doing more and more to help me get out of my funk. I know that if it wasn't photography it could easily be food, or alcohol or drugs, so I try everything I can to stray from the obvious ways people react to severe depression by doing something I love, even if that means the laundry gets backed up or whatever it is does not get done. Nicky's EB is taking it's toll on him and me more and more as it has been for the past 14 years, Greg's recovery is slow and frustrating as heck, his mood is really awful at times and even Connor has problems at school, he told me the other day reading to him is 'torture', which would explain why he's failing reading and his teacher and principal are considering retaining him and make him repeat second grade. It may be my fault, I don't read to him enough, I wish I had someone, anyone, that could help me with him, I feel as though I am so busy with everything else he's left behind. Even though I am having a hard time keeping up with my school work (mainly for my math class), dropping any of my classes, as my husband suggested, is completely out of the question. It's the only thing nowadays I look forward to. I look at other people's lives and they seem so simple, their gripes are so minute compared to the burden I have to carry every single day, a burden I did not cause. I have questions for God, tons. I don't really ask 'why me', as there are plenty of people dealing with children with health issues, I just wonder why he had to throw Greg's enourmous health issues in my lap as well. Don't I have enough on my plate? I spend so much time changing bandages and taking care of Nicky's needs that many times I am left with very little time to take care of Greg's and Connor's. I want to be the best mom I can for him, I try so hard to do everything for him, but there is only one of me! THERE IS ONLY *ONE* OF ME! I can't do it all! Why God? WHY???

Tears are streaming down my face and it's a good thing. I've been trying to cry for the past several days without success. Thanks for listening and thank you for letting me vent.

{{HUGS}}

Count the Waves Freebies...

2011-03-04T16:38:00.000-08:00

Hey everyone, I finally have something NEW! Took me a while, but I've truly forgotten how much doing this kind of stuff really relaxes me. I will try to have new stuff more often.

What you see above is a preview of a WALLPAPER I made. You can download it HERE.

For the SCRAPBOOKERS out there, I have saved the quote as a free WORDART. You can download it HERE.

Finally, I also made this into an Incredimail Letter... You can download that HERE.

Please enjoy! No need to say 'thank you', but it would mean a LOT to me if you LIKED my AVON page on Facebook!!!

God Bless!

Only 8% Irish?

2011-03-01T18:25:00.000-08:00

As everyone that knows me knows, aside my passion for vintage photography and photography in general, genealogy is absolutely fascinating to me. My genealogy is fairly straight forward, I've been able to trace all branches to my family tree to the 1800s, and some even as far back as the late 1700s, and I am still in Italy. There is no " I am 1/4 this and 1/8 that" for me, I am 100% purebred Italian. There are some mysteries though... like the famous heirloom ring that my cousin has, supposedly my aunt was given this ring who belonged to my great-grandmother, my father's father's mother, and which has been inherited from the 'female' branches, which would mean at one time it belonged to a gal, my great-great-great-grandmother whose name was Lucia Callegari, born in the late 1700s. I did find a Lucia Callegari born at the same time in some castle in Austria but I don't know if it's the same person. That part of Italy at that point in time was part of the Austrian empire, so... hmmm? I would need to head back to Italy to research further and find out more. Another mystery that might take me out of Italy is from my mom's side. This beautiful woman in this picture was my maternal grandmother's mom, her name was Carolina Ariano. Supposedly, either her family or her husband's family was from Montenegro, which is an absolutely breathtaking area on the Adriatic sea, north of Greece, which used to be part of the former Yugoslavia. Of course I have nothing to substantiate this claim by my uncle, who is only retelling stories, but that side of the family is very dark hair/skinned, so it would fit, who knows?

Keeping this in mind, the genealogy of my children is something I am also quite interested in. Nicky's dad genealogy is also simple though, his mom is Italian (born in Italy and all) and his dad's family moved to the US in 1938 from Checkoslovakia, in a village that is now in Slovakia. So... Nicky is 25% Slovakian and 75% Italian. Done. Connor though... holy mamma.... I call Greg my mutt because... well, that's what he is, a mutt. The former wife of one of his cousins did his dad's genealogy and it's quite extensive. I was able to expand on it and find tons of records from censuses, but the results are as muddy as ever. Poland, Germany, Ireland, Spain, and many branches we can't even trace back to Europe, although with last names such as Crabbe, Simmons, Bowen, Medler & Stanley, my guess is that they belong somewhere in the UK or Ireland... no? Greg's mom's genealogy is a little simpler, but only from her mom's side. His mom's parents came to the US from Poland in the early 1900s, so his mom is 50% Polish. His grandpa's side though is probably as American as apple pie, who knows where they all come from originally, I can't trace anything back to any other country. I am 'assuming' Anderson is a Swedish last name, but all the other last names involved seem once again either from the UK or Ireland. We have Aldrich, Whitmore (Jacob Whitmore was a Doctor in the mid 1800s in the New York area!), Culver, Clark... one lonely little branch, which would be Greg's great-great-great-grandmother was born in a little city in Ireland called Waterford. Her name was Eliza O'Rourke and her dad was Michael, born there sometime around 1775.

So, what does this all mean? I broke it down in percentages. Greg is 37.5% Polish, 12.5% German, 8% Irish, 1.6% Spanish and... a whopping 40.6% is 'unaccounted' for! Okay, the most unreal thing to me is that he's only 8% Irish. I don't buy it! Greg is covered in freckles, especially on his shoulders and chest, and that is an Irish or perhaps Scottish trait if I ever saw one, even Connor has little freckles on his nose, so there must be more "Northern Europe" going on which in my view takes up probably a BIG chunk of that 40.6%.

My little Connor, hence, is 50% Italian, 18.75% Polish, 6.25% German, 4% Irish, .8% Spanish, with 20.3% unknown, most likely "all" Northern European.

I wonder what my Grandmother would think...

2011-02-20T11:13:00.000-08:00

This is one of the last photos of my grandmother Stella, who succumbed to lung cancer in 1977, lung cancer which had spread there from Breast Cancer, despite the double mastectomy she had to endure. Nonna Stella (as I call her-Nonna is Italian for Grandmother) was my mom's mom, and if she had been alive today she would have just barely turned 102, as her birthday was on January 24th, 1909.

My mom was very, very close to her, she was the one that always took care of her along with, at times, her sister, my aunt Marisa, which I adored as she was my Godmother and always loved me unconditionally. I miss her too, she passed away unexpectedly last summer. Sigh.

Nonna Stella was probably one of the sweetest people I've ever met, very family oriented, very loving and caring. A good cook too! The one thing I never understood though is how an amazing lady like her could have a son (my uncle) that is probably the least family oriented person I've ever met. Growing up we occasionally met his children (my cousins afterall) but there was never that lovey-dovey that I thought "should" exist with family, and that surely exists with all my other cousins and even second cousins and assorted family members and many of my in-laws! To me, family means 'something', but sadly to some it doesn't. I recently found my 'so called' cousins on Facebook, tried to befriend them, perhaps, in my naivetee, try to connect on some level, even though we haven't seen each other in 30+ years, and while one added me, the other one denied. Okkidokki. The one that added me did answer to me on occasion when I would ask him a question, he never attempted to have any sort of conversation with me, I was the one initiating as usual, and then out of the blue he unfriended me. I wonder what my Grandmother would think about that.

Admittedly, I am probably at fault here. I give people too much credit, I expect too much. Even with my ex and current husband's families I feel I am the one trying to make the connections at times and I have often had the door slammed in my face. I have found some of their family members quite lovely, and some, as in my family, are like 'who are you? Go away.' So much for 'family'.

Why am I like this? Why can't I be like everyone else and not give a shit? I wish I could have a talk with my Nonna about this and see what her thoughts are. My dad thinks everyone should be like me, more caring, trying to reach out more, how everyone has something to learn from me, but maybe he's just saying it. I don't know. All I know is that's how I am and who I am, but one thing is for sure, once you unfriend me or refuse the connection, cousin, the ball is in your court. If you never contact me back, my conscience is clean. I tried. I hope Nonna Stella knows that.

Well, hello!!

2011-02-06T15:15:00.000-08:00

I just finished digi-scrapping 1978 so I figured I'd post a lonely page waiting to have time to upload them to Shutterfly for my book and to Fotki for safekeeping. God forbid I lose my work!

This page I made, no quickpage! I am so proud of myself, LOL. These photos were taken in Italy, at a beach resort in Senigallia, still my favorite Italian vacation spot by far. I look at these photos and to be honest it's hard to believe this was... gulp, 33 years ago. Good grief.

Next week I'm starting my Photoshop & Digital Photography class at the College for my degree, so as an effort to put "my all" in them, I will use my own photos and then manipulate them in Photoshop by modifying them and add quotes in them and then make them into either scrapbook kits, or Incredimail letters/tags etc. wallpapers or whatever I come up with and then post them here. I really need to use my skills if I want to get better and better and better at it, and since my degree, future business and livelyhood will need to rely on my passion, so be it. It's a nice distraction from my daily life.

I know that most people are surprised when I tell them my degree is NOT in Nursing! Oh no, thanks. I am a nurse every single day to my son and I don't enjoy it one tiny little bit. It's a departure for my husband, since his sister, daughter & ex-wife are all nurses. I am more the creative type, I love beautiful things and I want to share beautiful things. Just me! I wish I had more time to devote to this kind of stuff because it truly makes me happy, but there are days where EB just overwhelms me. One would think that after 14 years it would just get easier, but it's just draining and relentless. Nicky's at the age where parents of normal 14 year olds have a little independent person on their hands and Nicky is everything but independent and will probably never be. EB takes a toll on everything and everyone. I can't remember when was the last time I went out on a 'date' with my husband... 2008? Honestly, I think since we got married 8.5 years ago we've gone out to dinner 5 times. There is no family here from either side and also from Nicky's dad's side and all my friends are everywhere but here, so we're in it alone. I guess people might think EB goes away or gets better, well folks, it doesn't. It gets worse. I think at this point I got Nicky pretty much 'stable', but it's a fight every single day, with every new wound, every new surgery, medicines here, therapy there, it's never-ending. After 14 years I've learned to manage my time, but if I have to pick between cleaning and have some time for 'me' on the computer, I chose the latter, because I know it's less costly than anti-depressants. This does not mean my house looks like a pig-stie, let's just say I pick my battles. Kitchen and Bathrooms are always clean and the laundry is always done, the rest, it comes and goes. We could use some major help, but we don't have it and that's that. I've learned to live without it.

Well, I am off cooking for the Superbowl! Go Steelers!!!

It's been a while...

2010-12-28T15:56:00.000-08:00

It's been a while since I posted, and while my opinion about the enourmous shortfalls of the American Health Insurance industry continues to plague my life in ways unimaginable to most people, I try as I might to stay positive, to keep my mind busy, to try to busy myself with things that can improve my life. All my life my glass was always half full no matter what, and it still is, despite the way life keep trying to bring me down.

I was elated yesterday when I found out the advancements of Stanford in their genetically modified skin grafts to help RDEB patients like my son, I was able to see the lecture given by Dr. Lane at the Debra Conference this past June just yesterday and I was thrilled when he mentioned this 'patient in Europe' and how his graft is still enduring after nearly 10 years. I know this patient! I talked to him during Xmas 2001 right after he had the graft done, he's a sweet Italian guy that lives in Turin with Junctional EB. Well, they will start the trials of these grafts in the Spring in adults with RDEB first and if they work well, they will work even better in younger patients, which will be next in line. I found it kind of funny how the past couple of months I've said over and over again to anyone who will listen how if only we could get Nicky's knees, feet and upper arms 'forever' healed his life would improve ten fold and this might become a very real possibility within the next couple of years! This is just the 'hope' we needed to keep going, to keep moving, since the transplant at this point is basically an impossibility. I don't fault nor judge anyone that wants to do it, but it's simply not for us.

Let me say this again... I am NOT a critic of the BMTs. I absolutely love Dr. Wagner and Dr. Tolar, I think they are the most inspiring and caring Doctors I've met in a long time and I do hope their procedure improves with time so it's safer for the patients, and you will never hear me say anyone is crazy for trying it, especially those who have a 'sibling match'. My heart bleeds for kids with EB, and especially those with the fatal Junctional form and those with RDEB like my son, it's a horrific, horrible disease. If it feels right for you, do it. At this point, it's not the right thing for Nicky, and Nicky is old enough to understand how it's better right now for him to wait for the skin grafts. It's his choice. And that's that.

I can't or, rather, won't say that to EB groups because I have a hard time with 'support groups' or 'fan groups' of any kind. The hate that goes around is horrible. I could sit here and tell tales of all the people who are mad because only the worse forms get the attention or those who feel horrible because they are worse than anyone and the drama and bad mouthing that goes on is now beyond my level of acceptance. I've spoken and described in detail on a private blog about the way I was used and abused by a group of people in the EB community which is the reason why I stay away from their 'drama'. I have enough drama in my life without being in the receiving end of theirs. I thought though that 'fan groups' wound be fun. I was incorrect. I recently joined a fan group of a particular show and the only posts were those from people who think nothing of using profanities and hateful speech and derogatory remarks about this character or that actor, it's absolutely horrid, and when I called them on their hate, they called it 'their opinion' or their 'freedom of speech'. No thanks. Hatemongering and fearmongering is not my bag. Period.

I promise to start using this blog more for my creativity in the future. In February I will start taking two classes toward my degree that will enable me to share some of my creativity, which include digital photography and advanced photoshop. I know I have a lot of 'fans' of my Incredimail work (bless their hearts!) so I will start making some of those again in the Spring as well.

In the meantime, if you would like to help me out, since I had to quit my job at Target so I can be at home more to take care of my husband post-strokes, Nicky and his online/home-school and my little guy who is only in 2nd grade, please join my AVON Facebook page which includes deals and an inspirational quote of the day! Here's the link to join now!
http://www.facebook.com/AVONbySilviaC

Thank You and God Bless!!

Nicky's journal...

2010-11-12T22:43:00.001-08:00

I just updated Nicky's journal... very personal stuff. Treat with kindness.
http://www.caringbridge.org/visit/nickyz/journal

Yes, it's THAT bad. Period.

2010-10-29T12:27:00.000-07:00

On our way home from our umpteenth FAILED appointment to see the Phisical Terapist (oh man... it's a long story and simply a complete joke... will explain further down in this blog) my husband said to me:"Until I had my strokes I had NO idea how bad the 'Health Insurance' system of this country is". Isn't that how most people are? Until they feel it on their OWN skin, somehow, everything seems just peachy, anybody that complains are just 'whiners'. Right?

I had no idea either on how bad the Health Insurance system of the US was either, my first taste was after Alex was stillborn at full term. At the time we had a PPO (where the insurance pays 80% of the total bill), we came home from the funeral and in the mail there was a bill for $2,500. Yes, you read that correctly. We had just BURIED our son and now we had to pay $2,500 for a dead baby, which was 20% of the cost incurred in the hospital and for the prenatal care. Lovely, no? Talk about kicking and slapping somebody when they are down. Being down is an understatement by the way, I was downright destroyed.

But... that was only a morsel compared what we would experience after Nicky was born. I remember vividly , meeting with the dermatologist and him teaching me how to change Nicky's bandages. Where would I get the bandages, I asked? Oh, he said, the insurance has already approved 4 visits with the Nurse and she'll bring the bandages to you. She did, and that was great, but after that? We were on our own. We scoured medical stores and got some bandages donated, the Nurse had brought us tons of extras, but they were extremely expensive and it was clear from the beginning that we would have to wash, re-roll and re-use because the insurance flatly REFUSED to pay for them. Our income had already been slashed in half since I had to quit my job to take care of our son, it looked already as if we were going to lose the house and we had to sell one of our cars, how on earth could we afford $1,000 worth of bandages EVERY MONTH? "They are an over the counter item" was the insurance's excuse. Right. It's ONE thing to buy bandages for a burn that is temporary and it's going to heal, it's a completely DIFFERENT matter when there are chronic, ongoing wounds. The insurance and everyone that worked there could not care less. Appeals were denied over and over again.

Although the bandages situation was our biggest problem, that was not the only one. When Nicky was 4 months old we had an appointment with the dermatologist that diagnosed him and we had a million questions for him, and he had very few answers. Who could blame him? RDEB is a one-in-a-million condition, it's not like a dermatologist sees that many patients with it, even though he was "the" expert in the state of Arizona (and I called EVERY pediatric dermatologist in Arizona, so I know that to be true). He told us we had to go to Stanford to get our answers. Stanford has an 'EB' clinic once a month where they see patients, so we got a referral for them. Surprise surprise... it was DENIED by the Insurance!! What?? When I called, the snooty lady asked me why I had to take him to Stanford, if there wasn't "another" Doctor in the state that I could take him to!! Right!!! Did I mention RDEB is a one-in-a-million condition and we had gotten the referral to Stanford from the ONLY pediatric dermatologist that knew anything about EB? It took 5 months worth of calls and pleas, but finally we were able to take Nicky to Stanford. At this point Nicky was 9 months old and the answers we got came a bit too late. Some of this information would have been CRUCIAL for us to have when he was born. For example, who knew about the hands contracting? I had read someting about 'webbing' but the contracting was news to me. Lo and behold, Nicky's index finger was already a hook and could not be straightened. He was 9 months old!! Now, remember, this was 1997, there was hardly anything about EB on the internet and the only other person I knew that had a child with EB was someone who had a child that was younger than Nicky so it was like the deaf leading the blind. There were no support groups anywhere to be found and nobody I could ask any questions to that would have an answer for me. To say I was living in a nightmare it's the understatement of the year. I remember vividly one day putting Nicky's foot under the sink with running water to get the bandages unstuck and amist his screaming a friend leaving a message on my answering machine asking me how I was doing with the new baby and if I was enjoying being a new mom. Oh yeah. Don't get me wrong, I ADORE Nicky, Nicky is THE sweetest child in the Universe and I will say that until the day I die, but it was hard taking care of him without any help from anyone at all and this remains the hardest things I ever did in my life. Three more incidents come to mind, one involved a blister on his tongue that was so gigantic it prevented him from breathing. How would you like to take your baby and put him on top of you while he's screaming and direct a needle in the back of his mouth to POP this monster so your child can breathe? How about another time where out of the blue he started vomiting blood? The worse experience, one that I still can't shake after all these years is when I accidentally stepped on his hand, proceeding in COMPLETELY ripping off the skin of his entire hand. Within minutes my bathroom was filled with several fireman would were just SHOCKED at that view and had to think about it and discuss among themselves before they figured out what to do. I am still in tears when I think of that day.

Before you even wonder-yes, I asked the insurance if they would send a nurse at least once a month to help me out because I was drowning and it was DENIED. I ended up in a psychiatrist office, all I did was cry for an hour and all she did is hand me a prescription for pills. Lovely. I took the pills for a month and I decided they were not for me. Nick had me try other things and I just came to the realization that none of that stuff was for me, that to get better I simply had to get emotionally better on my own. Easier said than done. That's why I ended un in Italy for nearly a year, getting help from my parents, and my dad, 'til this day, tells me how he'd never seen me so low.

BUT, that's another story, for another blog. Over the years I continuously tried to get the Insurance to pay for bandages, and I got constantly refused. Even when I moved to California and I was able to get CCS to cover bandages, they still needed a letter from the Insurance once a year stating the denial, and it would take them sometimes up to 3 months to get me that letter, which meant I went without bandages for those 3 months. Then there was the time the Pediatrician was adimant of Nicky having PT & OT once a week each. People don't understand this, but every single appointment has a $30 co-pay. This means $60 a week or $240 a month and I wish I could have afforded it, but I didn't. I ended up in the bankruptcy office. Yes, I had a bankruptcy over MEDICAL bills. Sounds familiar? Why do you think I am so mad? I have an entire family in Italy, some of which have had some SERIOUS health issues, such as my mom, who was in the hospital, near death for 3 months, not only they saved her life, but the source of her problems, her kidney, was saved without the need of going on dyalisis, and her co-pay? $0. Here there is a $150 co-pay for EVERY DAY you're in the hospital. In Italy the National Health Care system takes care of you. The same Health System that paid for my sister's IVF, who pays part of the women's salaries so they can stay home with their babies the first year of life, the same Health Care System who has taken care of every family member of mine without bringing them into bankruptcy. I feel really nauseated when people, who NEVER lived in a country with a National Health Care system, have a strong negative opinion about it. It's like they have an opinion about a book they NEVER read! Their opinion means NOTHING to me. But, alas, of course I am not even mentioning all the times Nicky needed a throat dilatation or a hand surgery and the referral took months and months to get, one time it took 2 years! It was a long story of lots of people not giving a hoot, but, again, another story for another blog. Or a book, yeah. At some point the whole story will be told.

So, what happened to Greg today? It all started months ago. A year ago actually, when Greg had his first stroke. After he was sent home from Rehab he was referred to a PT in the area. We were supposed to go once a week. We went to the first appointment and we saw the guy for 10 minutes, he handed us a flyer of excercises to do and sent us on our way. Driving home we were wondering why we weren't asked for the co-pay and figured since it hadn't been a 'session', maybe that was the reason why. We went again the following week and... same thing happened. 10 minutes, flyer, no co-pay. On our third appointment, while we were waiting in the lobby the lady asked us for... are you ready? $90 for the 3 "sessions". What sessions? 10 minutes... you call that a session? What kind of SCAM is this? We took our 'flyers' home and we started doing everything from home. After the second stroke there was no Rehab, even though he was worse off than after the first one. For some reason they thought he was getting PT or maybe the insurance didn't approve it, I really don't know, I was just happy to have him home so I didn't ask too many questions. It wasn't until an appointment with the FAB Neaurologist in Loma Linda that we realized we truly got the short end of the stick. She was mad at everything and everyone. 10 minutes? What? She wanted Greg in Rehab in Loma Linda, a new brace, all kinds of stuff. After 4 months we FINALLY got some in-home rehab (it had been DENIED twice, until the Dr at Loma Linda called them directly), but the in-home place was only approved for 4 visits with the OT and 4 with the PT, the co-pay was something we could handle, $15 so we would have been happy if this was something ongoing, but it was not. Did I mention that after it was approved, we were still told it was DENIED and the appointments were cancelled? Twice? A nightmare. That's what it is, period. A nightmare.

Moving on at a snail pace, in August the PT/OT appointments ended, Greg got his new leg brace and we were waiting for the approval for the outpatient PT. When the approval finally came in, and it was once again for that SCAM place, we were understandably upset. We told them that's the last place we wanted to go! I called for an appeal, twice, nobody called me back (shoooocker!!), finally I got a hold of the Insurance who gave me a list of places where I could just call and make an appointment for. Which, I did. Their first opening was this morning. When we went in we were told they don't take Aetna HMO and they would need the referral from the Doctor. Ugh! It was Aetna who gave their phone # to call for goodness sakes! I came home and there was a letter from Aetna stating they are working on the appeal and I just got off the phone with someone else at Aetna who told me they are 'working on it'. In the meantime, we wait.

What angers me is that I have a school friend in Italy whose boss had a stroke last year. SAME kind of stroke Greg had. Nearly identical. Without much problem, she's been getting FREE PT (Thanks to the National Health Care system) every week and now she's almost back to normal. After a year she has to pay out of her own pocket, but it's only $40-50 (not sure about the xchange rate at this moment) per session (here it's at least twice that, I checked!) and she only goes once a month now since she's nearly recovered. I am crying in ANGER thinking how much better Greg would be right now if the stupid "Health Insurance" system in this country worked without PROFIT. What is wrong with America? For shame!!!!!! Why can't we take care of our own? Mad, Angry, Disappointed, nothing can really describe me right now. Makes me want to take him to Italy right now if I could

And... that's the way things are in my world. As I said before, until you experience things on your own skin... never 'assume' things are so peachy. Ever. Never judge a book you never read.

Peace,
Silvia

NEED good news please... anyone?

2010-07-31T14:17:00.000-07:00

I am having one of those days. One of those days where I *NEED* good news. I need cheering up. Anyone? Something? Anything?

There are several things in regards to Greg's mobility that scare me. If we can't get Greg mobile and independent SOON, Nicky might suffer severe consequences. Why you might ask? Here we go. Ready?

1. Greg might lose his job=lose his insurance. Isn't that beautiful? Without insurance, there is no transplant for Nicky. Even if Nick starts covering Nicky with his own insurance (which I know he will, not even a small question), the new insurance might not cover the transplant or other things, such as the surgeries and bandages Nicky needs. I need not remind that Greg needs insurance himself. Have I mentioned the nightmares the Insurance companies have put me through the past 13 years since Nicky was born? No? Just wait until I finish my book. Your jaw will drop. With Greg losing his job we'll lose not only the isurance, but the house and everything else that goes with it. Forget, once again, me trying to go to College, I will need to get a full time job somewhere while being a 24/7 caregiver for both Nicky and Greg. Fantastic! Nervous breakdown? Here I come.

2. Even if Greg does not lose his job, if he needs me here to care for him, this means I cannot take Nicky to have his transplant. I am uncertain if Nick can just take him-afterall, I am Nicky's primary caregiver, and it's unlikely that Nick can take 5 months off work. Without the transplant, it's not a question IF Nicky will pass away form EB, but WHEN.

To be honest, I am sick and tired of CRAP happening to my life I have NO CONTROL over. Alex's death? I certainly didn't cause that. Nicky's EB? I didn't cause that either. Greg's strokes? Not only I didn't cause it, I really do not blame Greg for that either. Greg was a runner, he was a healthy man all his life, always eating well. Maybe not as well as he should have, his BP and cholesterol was slightly high, but he wasn't overweight by any stretch of the imagination and he was active. I see all these obese people getting drunk or high on a regular basis, eating hamburgers and french fries all the time, much older than us, yet, nothing happens to them, and they all have healthy kids and I want to know WHERE IS THE JUSTICE IN THAT? Why am I the ONLY person in the family with a dead child? Why am I the ONLY person in the family with a disabled child? Why am I the ONLY person in the family with a disabled husband? Why does every CRAPPY thing have to happen to ME?

God better have a good reason and a good answer for me when I reach the perly gates, that's all I have to say.

THank you for letting me vent! I feel better now. Waiting patiently for my mood to improve. Maybe talking to my mom and dad will help-I will go call now.

{{HUGS}}

The worse thing you could do...

2010-07-21T22:21:00.000-07:00

Wanna know what is the worse thing you can do to me? Make me like I am right now, stuck, unable to travel or go anywhere. My dad has a big birthday this winter and I can't go see him. I can't go by myself because my family needs me, and I can't afford to take all three with me, let alone being able to push two wheelchairs with two hands. It ain't happening. Greg has retired his chair, but he can't really walk long distances, any air travel with my family is completely out of the question, not only to Italy but, well, to anywhere. No vacations for us, no one day trip to the beach, to an amusement park or to a national park. Connor keeps bugging me about taking him to Legoland. Yeah. I wish. Connor is stuck at the house like everyone else. I am not asking much, am I? ONE DAY. Nop. Nothing. Is this temporary? It's unknown. Greg could become independent within 6 months... or 6 years. If we'll go through with the transplant for Nicky once Greg is a bit more independent (whenever that will be), it will mean we'll be grounded for a full year after that due to the weakness and precariousness of Nicky's immune system at that point. And then, there will be the unknown of how he'll be doing after that.

Is this a big deal? It is to me. We have no family nearby. All my friends are everywhere BUT here. This means we're stuck and alone. Is it any wonder we are truly considering moving to Italy when Greg retires? Is this a shock? To be able to spend Christmas or Easter surrounded by family? How many years have YOU been away from your family? For us, is just too long. Decades... Amazingly enough, I was ridiculed for this too. Whatever. I thought my life was MINE to live. Am I wrong? Greg is the one that suggested it and wants to go! LOL. Give me a break.

So, why did I move from Italy to begin with? I get that question often times. One of my cousins was asking me that a few years ago... "were you running from something?" Nothing could be further from the truth. But, to know the truth, one has to know me REAL well. The truth is that I am, by nature an *adventurer*. By the time I was 18 I had compiled a scrapbook full of travel photos. My favorite collections were stamps and postcards from all over the world. This is one of the reasons why I didn't want children in my twenties, I wanted to LIVE. Of course, hindsight is 20/20, I probably would have gone about the whole thing quite a bit different knowing what I know NOW, but at the time I could only go by what I knew back THEN. I found every opportunity that presented itself and I grabbed it. I was not running FROM something, I was running TO. By the time I was 20 I had gone from California to Florida and back. Amusement Parks, National Parks, loved it all.

I am older now... just turned 46. I still want to travel, still want to see places. I can honestly say, there is nothing in the US I am really dying to see... maybe New York. My 'bucket list' includes Egypt, Paris, London, and Italy, yes, glorious Italy, I want to see it all. I want to take photos everywhere. I've always been keen on photography, by the time I was 10 years old I had compiled photo albums in chronological order for every member of my family. Yes, I was 10! I now have magnificent scrapbooks that are filled and I want to fill-and nobody to show them to. But, not now. I have to contend with the now. The now of taking care of my family, who will always come first. I know sometimes I've been criticized of making things about "me". The truth is, when Nicky was born with EB, it's almost as if a bomb exploded in my life that turned everything upside down. EB enters every aspect of my life. I always have to make sure the bandages are changed, the Doctor's appointments made, the transfusions taken care of, supplies ordered, and Nicky is HAPPY!!!! Everything falls on my shoulders, but somehow I am not supposed to complain, ever! I try to be positive and on most days I am, but on days like today, confronted with the reality that I can't possibly go to my dad's big birthday dash, yeah, it's depressing. I don't know WHEN I'll be able to go to Italy and see my family, at this point it's *definitely*no sooner than 2012, it will all depend on so many things which are all up in the air right now.

Give me this day of feeling sorry for myself. It does not last long. I will be better tomorrow... promise...

Mini-Greg & Nicky Update 7/8/2010

2010-07-08T15:26:00.000-07:00

I promised an update on my boys and I will do one now since it's been a while since I've done one, although I don't have too much new info to share.

Let's see... let's start with Greg. Unfortunately I can't really say I see a lot of improvement. He tells me that he keeps up with excercising at work, especially his arm, and he's finally able to open and close his hand quite a bit more that he used to, but far and wide, since, say, May, I can't say what else I can see that has improved even slightly. It's depressing him and it's depressing me. Before his second stroke this past February he had made some major strides that are yet to come back, such as his ability to walk without his brace. He still needs his brace, day in and day out and won't go without it. He uses his cane often to lean on and one good thing is that he does not want to go back to the wheelchair no matter what. He does drive to work now daily, at first he had a ride almost daily, but he's gone solo now for about a month or so. That has made a big difference in his confidence. His numbers are fantastic, blood pressure, cholesterol, everything is in the normal range.

Nicky had a rough week or two after his throat dilatation in late June, but I can see we're turning the corner a bit. Before his dilatation he used to throw up daily due to his inability to swallow and his allergies... he's allergic to "something", we can't really test him for due to his skin, but we know it's environmental. Anytime we travel anywhere, wether it's Northern California, Arizona or even Italy, his nose is clear, but here it's a different story. We finally figured out a cocktail of medicine to give him at night (a nice one! All we need to throw in is alcohol, LOL) and his itching/nose is under control. His itching, by the way, is his WORSE enemy. Especially at night when he does not realize he's doing it, that's why the meds are so important at night. 90% of his wounds are caused by his itching, so to us is *vital* to overwrap to create that very important padding to prevent him from hurting himself. It works for us. It's funny-there are some doctors that are NOT happy with the overwrapping, they tell me his skin needs to 'breathe', but, okay, the skin is now breathing BUT it's full of wounds? NO THANKS! Nicky has LARGE chunks of his legs/arms, which are his roughest spots, wound-free for ages, thanks to the overwrapping. Interestingly enough one nurse at Stanford last month praised me for it. WOW, there's a first for everything. Oh no, wait... the EB expert guy in Italy once told me he wished all the parents wrapped like I did. Yes, 2 people believe in me. YES!! LOL ;-)

Moving Forward... for Greg, more of the same, we have more appointments for Loma Linda, but the super-duper Physical Therapy he NEEDS got denied by the insurance because they said it was NOT 'Medically Necessary'. RIGHT!!!! So now we'll have a talk with the local Physical Therapy because for them to give us a piece of paper and talk to us for 10 minutes of what we need to do is completely UNACCEPTABLE. He needs a full hour of someone working on him for goodness sakes!!!
For Nicky... by the end of this month they will fit him for leg braces that are soft and fit over his bandages for him to sleep on to attempt to straighten his legs a bit or prevent further damage. His knees have had large wounds since he was 1 year old and have NEVER been wound-free, so he walks with a little bend at the knee joint.
We are still waiting to hear from Minnesota about Nicky being a candidate for the Bone Marrow Transplant. They have all the medical records that I could get my hands on so now everything is out of my hands. I am hopeful I should hear something before the end of next week. If Dr. Wagner decides Nicky can be a candidate we'll make arrangements for Nicky and I to fly out to Minneapolis for the evaluation, which will include tests, xrays and a full disclosure of what it will all entail. Provided all the tests come back OK I am hoping to be able to take Nicky to have the BMT sometime in the spring-early summer (we'll be gone about 4 months), provided Greg is more independent. I really worry about that! Somehow we'll muddle throught it.

I'll have another update, possibly at Caringbridge sometime in late July/early August for Nicky. The online school is planning an IEP to address any possible concerns, but I am already contemplating possibly quitting my job to fully concentrate on my school and be there for Nicky for his school when he needs me. So many things are up in the air right now, can't really plan too much ahead.

If you got to this point, thank you for reading and thank you for caring!!
{{HUGS}}

Silvia and Family :-)
P.S. BTW, Connor is doing great, he's my joy and perennial cuddler, he helps me and both Nicky and Greg all the time. He's 6 going on 32. Will start 2nd grade next month!

WordArt Freebie

2010-06-10T14:41:00.000-07:00

Here's my WordArt Freebie for this week...

CLICK HERE to Download...

Here's how I used it!

That's my son Connor when he was 4 days old...
CLICK HERE to see a full preview of this page. I made it using a kit I got from SteelCity Scraps.

{{HUGS}}

WordArt Freebie

2010-06-04T09:46:00.000-07:00

Wow, it's amazing. I actually have time to do this again! I've missed it enourmously. I will try to do one per week before school starts again in the fall...

Here's my WordArt Freebie for this week...

CLICK HERE to Download...

Here's how I used it!

That's my son Connor when he was 7 months old... ADORABLE or what? Of course I am a bit biased. He's just finishing up 1st grade and I still can't believe it!

CLICK HERE to see a full preview of this page. I made it using a kit I got from Wimpychompers Creations.

Never assume... never take for granted...

2010-05-19T18:11:00.000-07:00

Being away from my family I have to admit that at times I put too much stock on people I barely know, people that often disappoint me, who assume constantly wrong about me and who take me for granted over and over again. I would give my right leg to be close to my family and be near people who truly give a hoot, and it really irks me when people who do have their family nearby who do their best to ignore them and spend as little time as possible with them.

It's okay, it's par for the course, I always remind myself I chose this, I moved away, and normally I would brush it off, but lately it seems as if I am the one that has to keep everyone in good spirits and I feel discouraged about life as a whole. Yet, I march on. I don't have time to worry about my stupid feelings, I have a son who is THIS CLOSE to giving up about life-who just wrote me the most heart-wrenching email, telling me I am the only person that cares about him and how "he's the stupidest person ever to come into this foul cruel world called Earth". I can't exactly blame him for feeling this way. He feels alone, left out. He has no friends, his grandmother hasn't seen him in 10 years, my family in Italy is closer to him than his family here, and that's saying something. All I can do is hug him and tell him how special he is... not sure what else to do. He matters to ME. He may not matter much to anyone else but he matters to ME.

Greg has his moments as well. I am very proud of the way he's usually in a good mood, but more often than not I can't help but feel for him because he's such a different person than he was a year ago and he's also quite alone. He's always been a loner anyway, but he had hoped some people would have reached out more to him, but he's also realizing he's been taken for granted and he's developing a relationship with Connor that's quite remarkable because of it. The stroke has left him very emotional, doubtful about himself, doubtful about the future. He has a lot of fears that I always try to calm. Storms I try to appease. At times he gets angry, he forgets things. When there are no words, there are always hugs.

Things can only get better, right? I've been listening to books of Abraham-Hicks after the suggestion of one of my professors last year and I try CONSTANTLY to look for the silver lining... the law of attraction, positive thinking... When my school year is over in 2 weeks I will make a vision board to further help my quest for positivity. Negative, selfish people can expect to be avoided. I don't have time for BS.

I just wish I would get some positive news about this transplant for Nicky. Truly, my mood would INSTANTLY go from 0 to 60. Nicky NEEDS some good news for goodness sakes!!! NOW!!! I cry thinking the Medical Group may deny it and how mad I am going to be. I talked to a lawyer and she said that if the transplant is FDA approved they can't deny it! Right. She's talking to the denial queen. I am constantly denied everything for Nicky. Nicky was denied bandages for 12 years!!! I am the one that has to jump through hoops constantly to get things for Nicky that other parents never even have a minimum issue with it. Why should the transplant be any easier?

My next quest for positivity... I am awaiting an email that I hope will come with an invite to attend the American Idol finale! Nicky really needs this, my sanity needs this. Is it asking too much?

More Cecil Beaton...

2010-05-04T19:00:00.000-07:00

I did my presentation on Cecil Beaton for my History of Photography class, so here's more of the photos I used for it... I hope you enjoy!~

Greta Garbo

Orson Welles

Marilyn Monroe

Gary Cooper

Barbra Streisand

Audrety Hepburn-Cecil also designed her costume, which won him an Academy Award

Queen Elizabeth II - Cecil was a favorite of hers

A man of words and not of deeds is like a garden full of weeds

2010-04-19T17:43:00.000-07:00

Greg hired a gardening service about a year ago to come once a week to mow the lawn etc. They just started coming again since the winter break and I was shocked to find out that I still have 3 little strawberries plants kicking. They are flowering right now, I might have some strawberries soon!!

Weeds are the enemy of beautiful gardens because they compete with your plants for water and nutrients. Likewise, the weeds in your life must go because they compete for your energy and block the positive thoughts and action toward your goals and your happiness. As you may imagine, at this point in my life, I need all the positive energy I can muster:

1. I need to keep Nicky as healthy as possible-which includes daily bandage changes, nightly "cocktail" of medicines, g-tube feedings, trips to the hospital for infusions, dentist, hydrotherapy, xrays, throat dilatations etc.

2. I need to make sure my husband gets all the help he can from the medical community and help him with daily excercises and daily things he cannot yet do by himself. I have to always have a positive word or thought for him. He deserves it.

3. I want to do good in College and hopefully get my degree before 2012... and still keep up with my work schedule and keep up with all the household chores which pretty much all fall on my shoulder, laundry, cleaning etc.

I am not complaining here BTW, I am just stating what I need my energy and positive thoughts for.

So... what are some of these weeds?

1. Some weeds are yours forever. They are better known as family. Some family members are exactly what you need, you are there for them and they are there for you, they are joy to have in your life. Unfortunately others are poison, only bringing negativity to your life. They are ungrateful, uncaring and selfish.

You know the ones I mean. They are the ones who either cannot be happy no matter what or/and always bring negativity, doubt, depression and sorrow in every moment of every day.

2. Some weeds you choose. They are better known as friends or spouses. We are drawn to share our dreams and goals with them, but we have to be careful. While some friends are wonderful and truly have your best interest at heart, some may become jealous or resentful. Do not let them project their fears on to you, your progress toward your goals and happiness will be slowed if not stopped.

How do we remove these weeds from our life?

Minimizing contact is the first step to reduce exposure to the toxic efforts of people out to diminish your worth and devalue your goals. Depending on the amount of negativity and life-sucking capability of these individuals, one must severe ties as soon as you become aware of the damage they are causing.

Preventing future weeds from entering your life garden is the next step. While minimizing contact with toxic family members may be the only step, while making new friends, now that you can recognize the signs, you can act quickly to keep them from getting too close.

Always be on guard against inviting your own internal weeds in the form of negative thinking and self-destructive habits. Keep practicing more positive thoughts, follow your passion and pursue your goals, but always be prepared for possible weeds lurking.

I surprised myself...

2010-04-17T17:52:00.000-07:00

I am taking a History of Photography class for my degree and part of the final grade is doing a presentation regarding a photographer that inspired us. Those of you that know me well know how much I love panoramas and scenic views.. when I take pictures other than my kids, it's of nature, landscape, that sort of thing. I have taken, over the years, some many truly amazing shots (if I do say so myself!), I think I may take my professor's suggestion and make a book for myself blurb.com of all these photos, and I think I might just do it.

At any rate, at first I was leaning toward Ansel Adams (of course!), but the work of Man Ray, Lewis Hine and Dorothea Lange was so great that it prompted me in doing a search of just "famous" photographs to get inspired. I wanted the photo to draw me in, not the famous name. I finally came across two photos that I can't stop staring at. One is from a photographer from Transylvania called Brassai. He was famous for portraying the night life of Paris in the 1930s. The photo that just mesmorizes me is called Bijou-Madame Bijou is a photograph of an old woman who once led a rich life but now lives on charity. She read palms and told stories to receive food and money from gullible men.

I don't know if it's the jewels or the somewhat familiar face, but I can't get this photo out of my head!

The second photo is a beauty. A truly amazing photo of the late Marilyn Monroe. I've always had an affinity for this tragic actress This particular photo of Marilyn Monroe interested me because it seemed a bit unusual in the way she is lying on a bed on top of a blanket portraying a Geisha. I can almost “see” the colors in this black and white photograph shine through because of the rich detail, which gives this photo an aura of mystery and intrigue. The rose in Marilyn’s hand and her sweet hint of a smile gives us a sense of her tormented life she tried so hard to cover up.

Sir Cecil Walter Hardy Beaton took this photo, he was an English fashion and portrait photographer and an Academy Award-winning stage and costume designer for films and the theatre.

Cecil Beaton’s work caught my eye for the romanticism, elegance, fantasy, charm and the absolute beauty of each and every photograph he took of famous people such as Twiggy, Mick Jagger, Katharine Hepburn, Greta Garbo, Winston Churchill and Pablo Picasso. Reading his biography it’s easy to see why his work took this angle; he was enthralled by High Society, Glamour & the Theater world. Beaton is best known for his fashion photographs and society portraits, and often photographed the Queen of England.

So, in the next few weeks I decided I will be making my presentation about Cecil Beaton's work. That is surprising to me just because a fashion photographer was never something I thought I was interested in, I guess I am a bit more open minded about my likes and dislikes than I thought!

Aren't these photos beautiful?

And that's the way it is... part deux

2010-04-15T14:00:00.000-07:00

I've been "online" for almost 18 years now and on some days I am still wondering if this social experiment has been worth all the ooplah. While on one hand it has been rewarding to be able to actually have contact with all my wonderful family and friends all over the world (literally) and especially in Italy, unfortunately I've been exposed to and being target to things far less than pleasant.

After my son Alex died, for instance, I was one of the very first people to have a webpage in memory of a baby lost. The Wall Street Journal took notice (yes, the Wall Street Journal CALLED ME! Imagine that!) and did a two page spread in their paper about little old me and my little website. I couldn't believe it. I got wonderful letters from all over the world from other grieving mothers because of that. I made lasting relationships with a lot of wonderful people. But the reason why I had to remove all but one of his photos from the website is because the exposure wasn't all good. Years later, suddenly I was getting letters that a grieving mother should never in a million years read. Letters so gross, vulgar, that made me change my link over and over again so they could not find me. Apparently a group of sick individuals thought it was fun to target grieving moms. One particular individual stood out because he kept using one photo of Alex, pairing it up with Aliens, Skeletons and horror movies paraphenelia. Months later I get a call from Scotland Yard... yes, THE Scotland Yard. They had a suspect in custody for murdering a Nurse and when they seized his computer they found all these vile emails about Alex he wrote me and asked me if I would cooperate to make sure he went behind bars forever. You betcha! I provided a statement, copies of the photos, emails etcetera and months later he was sentenced to life in prison with no parole. All this proving how good AND bad exposure can be.

As many of you know, I am the President of a non-profit organization (EBAN) that helps EB families. While lately life has been a bit too hectic for my partner and I to do more fundraising (hence actively helping more people), I've always felt as if helping others was the right thing to do. That's why I put thousands of hours in the ebinfoworld.com website, which I established long ago, which has all kinds of information, links and more for new parents or anyone wanting to learn more about EB. Once again, the exposure was good in many ways, but also not so good in others. The good was mostly being able to have ongoing conversations with other EB parents who taught me a LOT about caring for Nicky, and the highlight was having my sweet friend Susan, who appeared on the Rosie O'Donnell show, post my link on her show! I was thrilled beyond words. I will not mention the 'bad' part in this instance. But, let's just say, I now feel quite a bit for Celebrities on the cover of magazines with nasty headlines which aren't even true. I've lost count of the nasty crap (yeah...some things were true-I never claimed to be perfect, but the lies or the exaggerations have been staggering) I've been subject to and because of it I've developed quite a thick skin. I no longer lose sleep over it. I laugh it off. Shake my head. Whatever.

It would be one thing if people that truly know me would have something bad or untrue to say about me, but that's never the case. Ever. The nastiness only comes from those that know very little about me. I do not claim to be perfect, and I never will, but if you are going to write me an email full of insults know that it does not bother me in the least. It can't. Your insults come from either your ignorance or your character, in other words, they reflect YOU as a human being. I may reply back that you're pathetic, but that's about the worse you'll get from me, at least in recent years.

Remember this: "How you treat me is your karma, how I react is mine". -- Unknown

And that's the way it is...

2010-04-13T10:12:00.000-07:00

You win some, and you lose some. In life, you can't make everyone love you or even care for you, no matter how hard you try. At some point, we must realize when the war is lost and stop fighting battles are never going to be won.

September 10, 2001 was a hard day for me. My mom was recovered at a hospital in Italy and she was not doing good. In the next few days we almost lost her. She started bleeding heavily in the middle of the night and she became unconscious. By the grace of God, a Nurse checked on her and found her in a pool of blood. The amazing Italian Doctors worked feavereshly to save her, they even got drugs from the US to get her better, she would stay in the hospital 2 months before going home. I was emotional to say the least about the whole thing. Of course I couldn't talk to her, she was unconcious and then couldn't speak at all for sometime and my dad and my sisters would fill me in all the details. I was so grateful. At the time, just after 9/11, TV stations had non-stop coverage of the tragedy in New York. People were crying and I was a basket case. I had just lost my job, but somehow, someway, I scraped together enough money to go to Italy to see her and let her know I loved her. That's what a daughter does. I was thankful she was alive, that's all it mattered. There was no selfish motive whatsoever.

Love, gratefulness. Some things in life should be easy, common sense. The rules are easy enough: if you appreciate someone, tell them. If someone does something for you, be grateful. If your life would be worse without them, let them know. If the life of a loved one is enhanced by someone else, be appreciative of that. Why is it so hard to say "thank you" nowadays? I am not talking about close family members, my husband, my kids, my sisters, my parents... in trying times they have been fantastic. When my son is so appreciative of a new toy that keeps kissing me and thanking me for a week-wow, it just makes me love him more, if that's even possible. When my husband tries so hard to do things he can hardly do just to lighten the load for me-that's love. When my sisters comments on a blog I wrote, telling me that she misses me so much her heart aches, that's all I need to know to understand her love for me. And, of course, my parents, my dear parents, who, at every phone call they tell me how amazed they are for all I do without any help, and how my dad stays up at night thinking about me and worrying about Nicky, I have to count my blessings. Is it any wonder Greg and I have decided to move to Italy when he retires? That's where my heart is, and he knows it. He told me, on our trip to Italy, how much love he felt eminating from my family. He wants that. Since losing his mom, he felt as he's somehow lost it. He has a lot of people that care for him, but since his stroke, he's found exactly to what degree each one cares. Let's just say that some have been vastly more caring than others.

In the past few years I've sent wedding gifts and baby gifts-I did not expect a thank you note and I didn't get one. The amount of Xmas cards I receive has dwindled to, maybe, 10. I send emails with information or photos that someone requested that never get answered. I spend hours writing blogs so family members would know what's going on, but some are too busy thinking they "know" what's going on and be mad about stuff that didn't happen, and if they only had *bothered* to read, they would know better.

That's just the way it is. I choose to be grateful to the people in my life who are there for me. They Rock! The others, if you care enough, the ball is now in YOUR court.

Feelin' BLAH...

2010-04-06T12:41:00.000-07:00

I am in a foul mood today, so please bear with me. I am so upset right now about a whole batch of things it's hard for me to look evenly at what's going on and make sense of it all.

I want to know why the powers that be-God or whoever is up there-does not like me or my family one tiny little bit. Everything has to be a struggle. EVERYTHING!!! WTF??

Last week I found out that Nicky's pediatrician apparently does not give a crap. Finally there is a CURE for my son's horrid condition, and she does not want to be made 'responsible' for the Bone Marrow Transplant. The Referral will have to come from somewhere else. While I am fairly certain that Nicky's hematologist will come through for us, it will not be over as simply as that. Here in California there are some nuisance called "Medical Groups". Any referral that deals with "out-of-network" procedure has to be 'peer reviewed' and might need a 2nd referral. This all BEFORE it even reaches the Insurance for THEIR approval! Of course I have to constantly call, email, leave messages for anyone to GET THEM to do anything. I am STILL waiting for hydrotherapy to come through for us, I've been waiting since January and I can't even get anyone to call me back. Lovely. AAARRGHHHH!!!

Then there's the mess my husband is in. We had paperwork for disability and workman's comp to fill out and we went in last week to get that taken care of. Now we find out that one is done, but the other one? They won't do it and they are giving me all this munbo jumbo how the insurance won't approve the doctor filling out paperwork? WHAT? All they had to do is fax some paperwork over and now the girl that promised me this is apparently on vacation until next week. Does anyone, anywhere, actually give a crap? Seriously?

It does not end there. All we need is a little part for Greg's brace which is wearing out and we are given the 'don't call us, we'll call you' routine, and, yes, they NEVER call. Why should I be surprised?

This give me just more material for my book. I have 13 years of stories of the inadequacies of the US Health Care System, the non-caring staffs, Nicky's various pediatricians' opinions on me overwrapping this kid that when I lightly wrap gets completely covered in wounds from scratching, or other doctors (and other parents) being mad at me for getting Nicky a power-chair (I am sick and tired of them telling me it's like "signing their death-sentence"-what am I supposed to do, PUSH him every flipping where?), the ridiculous system (and waste of time & money) that makes you go to a referred Doctor that knows NOTHING about EB just to get a referral to one that does, the system that gave my husband a prescription to a medication that CAUSED a second stroke-and nobody wants to take responsibility for it, the Insurance who-when Nicky was a baby and I was nearing a nervous breakdown, would refuse to send a nurse to help me out, I have so many stories, after stories after stories, and this just adds to the pile. My husband just told me today how I've been fighting for 13 years, why would a cure NOT be a fight? I just wish someone up there would give me a flipping break, is all.

Okay, thank you for letting me vent. Back to my corner. I've got a Birthday Party to organize.
{{HUGS}}

Silvia

Happy Easter! Greg/Family Update 4/3/10

2010-04-03T16:15:00.000-07:00

Happy Easter everyone!

I will start by giving a quick update on Greg's latest Doctor's appointments. He had a CAT scan last week and as per his Neurologist all the blood from the hemorrage is now completely re-absorbed. It's good news all around. He will start taking baby aspirin next week and that will be that as far as 'blood thinners'. When we saw his General Doctor he stated he wanted him on Vitamin D and he's also upping his Blood Pressure Meds a bit, we're trying to keep his blood pressure in check and it has been a tiny bit high, so that should fix it. His cholesterol numbers are still good and his tryglecerides are now in the normal range! Hurray!

In a few weeks we're finally having this appointment with the 'stroke experts' in Loma Linda which has been in the works since January. I used to work in Loma Linda 22 years ago (am I THAT old? Seriously!!) so this will be the first time I'll be in that neck of the woods since then. Should be interesting.

Greg is making very slow improvements. He still can't really walk without his brace and his arm is still a little numb. He tells me his face is a bit numb still as well. He excercises every other day (or every third) day very mildly and we'll keep it that way for a while. No need to stress anything with his blood pressure issues etc. His memory is improving. When he got home from the hospital he was scaring me a bit-there were two incidents where I clearly handed him something, he looked it over and he commented on it, and then the next day he was asking me about it as if he completely forgot about what happened the day before. He hasn't done anything like that since, so it's a good sigh. Phew!
He'll "probably" go back to work in late April, it's still all up in the air right now-we'll see.

Connor is always the same sweet little boy as ever. He loves playing mamma's Facebook games (his latest is Zoo Paradise, he wakes up in the morning and immediately wants to play, LOL), is doing good in school and his latest favorite toy he even sleeps with is his Zhu-Zhu pets. The Easter Bunny is putting a couple of more in his Easter Basket... shhhhh!!!

For those not following my Caringbridge Journal for Nicky, I started that Blog officially the other day as we get started on our Journey to possibly get a Bone Marrow Transplant for Nicky at the University of Minnesota, to go there and read all about my current situation with the referral (the red tape is absolutely ridiculous!) the link is:
http://www.caringbridge.org/visit/nickyz
click above the journal to get notifications as I update. Right now the updates won't be very often, but as we get closer they will for sure get heavier. We're planning to start the BMT sometime in 2011, depending on Greg's recovery.

Our Easter will be as usual-just us four. Easter Bunny visiting, a ham, some mashed potatoes, and tons of CHOCOLATE! Connor can't wait, LOL.

Happy Easter!

Love,

Silvia and Family

CaringBridge Link

2010-04-01T22:12:00.000-07:00

I started a CaringBridge website for Nicky-I will start blogging about every struggle we'll go through on his journey to this transplant, and we start with just getting a REFERRAL!

Nicky's Hope Journey

Photo of the Day...

2010-03-29T15:48:00.000-07:00

I came across this photo while researching the work of Lewis Hine (Men at Work) for my mid-term today for my History of Photography class that pretty much sums up my fear of heights. Just looking at this picture gives me the eebejeebes...YIKES!

Still, no matter how my fear of heights make me feel about this photograph, is equally impressive for many other reasons. This is just one of the 3400 brave workers who apparently didn't suffer from "acrophobia" that built the Empire State Building in New York in the 1930s. Even in these dangerous working conditions (to say the least) only five workers died during the construction.

I find it kind of bizarre how my fear of heights has gotten worse as I've gotten older. The weird thing is that I am not at all afraid of flying in airplanes, I am cool going on roller coasters, no matter how high, and I would be fine standing on the top of the Empire State Building for example, probably because of the high rail, but put me on any bridge (the Glen Canyon bridge over the Grand Canyon actually gave me a panic attack), on a cliff or the edge of anything without something to grab on or a feeble rail and I truly feel like my heart pulsating outside of my body. I am still trying to figure it out. Is it a defense mechanism? Did I fall and die in a previous life? LOL. Who knows...

Greg Update 3/18/10

2010-03-18T11:00:00.000-07:00

I am doing an update today because I have something going on every day for the next two weeks and I know my computer time will be limited, so please bare with my as I get on my soapbox.

Greg has been home from the hospital now for a few weeks and the improvements have been very slow in coming, but they have been there. For example, when he was first back he could not walk without his (left) foot immediately wanting to fall to the right, and now when he's barefoot that does not happen anymore-however it still happens when he tries to walk with his shoes on. Slow improvements are still improvements. Usually he walks with his brace on otherwise he could not get around at all on his own. Please understand, he walks VERY slowly, and when he does it takes a LOT out of him. Yesterday, for example, I helped him get across our corridor (and back) without his leg-brace and with only the help of a 3 legged walker he holds on to with his good arm and after he was done he was absolutely exhausted. He then has to skip a day to recuperate! That's how it is. The massager I got him for Xmas helps his (left) arm immensly, he tells me he gets the same soreness as he does after a workout, so we alternate arm/leg everyday.

I am very proud of the way Greg has changed his life to allow major improvements to his health. For example, since his (first) stroke he hasn't had a SINGLE beer! This is HUGE because I am only too aware of the negative effects alcohol plays on a person's life. Both my grandfathers died from Liver Failure-directly linked to their consumption of alcohol. I've never been much of a drinker, mostly because both my parents, never had alcohol in their house. My mom was absolutely traumatized by the drunken tirades of her dad when she was a child, and my dad almost died at his grandfather's funeral because he drank too much-he was 10 years old and everyone (to my horror when he retells the story) was offering him a drink. He was too young to know any better, got severely sick and almost died. 'Til this day, and he's going to be 80 years old this year, he almost goes into convulsions anytime he even smells alcohol. At any rate, my grandma had a glass of red wine every night for dinner and she died at (almost) 102 years old. I look forward to my glass of Lambrusco every night and I limit myself to one. On occasion I might have some Spumante, like for New Year's for example and that's that.

Another thing Greg has done that I am very proud of is change his schedule. For years, or at least since I've reconnected with him 11 years ago, since he worked 'til midnight, he would stay up 'til about 4am and wake up around noon. No more. He goes to sleep with Connor around 9pm and wakes up after I come home from taking Connor to school, just after 8am. He even tells me he will never go back to that schedule again, he loves his new schedule. Yey!

I am also proud of the way his spirits seem to be up most of the time. The other day he had a bad morning emotionally-it broke my heart. I can't imagine how things might be for him. Here's this extraordinarily healthy man, who exercised all his life, trapped in this body he can barely move. I know that for family members and friends who haven't seen him since his first stroke that's hard to comprehend. My aunt, whom I love dearly, asked me a little while back when I was coming to visit her. She lives on the other side of the country and knew about Greg, but somehow, I suppose, since she hasn't seen Greg, it did not register with her how he really is right now. It's *impossible* for me to travel right now, especially if that means taking the entire family along. Greg and Nicky are on wheelchairs and Connor is only six, so unless someone can grow me a new set of arms, I can't possibly push two wheelchairs at once. That was the main reason why I got Nicky a powerchair after Connor was born by the way-a decision I was crucified for many times over by EB doctors and other EB parents who shall remain nameless. How was I supposed to push Connor's stroller AND Nicky's wheelchair at the same time? Anytime I take Nicky anywhere I have to use the regular wheelchair because I can't afford to purchase a Van to transport Nicky's power-chair, and while his chair does break-down for transport, it breaks down in roughly 10-12 pieces and the bottom of the chair requires 4 hands (hence, 2 people) to push together. Connor and Greg at this moment can't help me with that, so Nicky's sole use of his power-chair lies solely to go to school and back, since the special need bus has a way to transport the chair to and from. Nicky walks around the house, however hard that might be for him at times with giant blisters or wounds under his feet. No matter how I pad them, sometimes I still have to use a computer chair with wheels at the bottom to take him around the house. Thank goodness for my tile floors!!!

At this point I seem to have everything under control. People that know me know how my glass is always half-full rather than half-empty, so I've managed to tackle this challenge head on. My bathrooms are clean, the laundry is kept up with and my house is somewhat in good shape considering. Non-important stuff can wait. I pick my battles. I have to cook dinner every night because I have to keep a close eye to Greg's sodium, and nutritional intake. We have a lot of fish, white meat and the rice/pasta/bread we have is almost completely non-white. The only restaurant nearby that I found where I feel confident in buying organic/nutritional meals is called 'Chipotle'. I will try it this weekend, looking forward not to cook for once! LOL! Gift Cards welcome! Hint Hint, ha ha :-)

The only thing right now that is a cause of serious stress (and I am trying very hard to stay positive and deal with it, believe me) is the high cost of all of it. This is not the first time in my life where I wished I was in Italy with my family. Not only for their help and emotional support, but because of their health care system. Those close to me know the *hell* insurance companies put me through since Nicky was born. I have *so many stories* that will make everyone's hair stand up straight!!! They will all end up in my book. Everything from waiting a year and a half for a throat dilatation because I kept getting the run around from the medical group and insurance company, from being denied bandages over and over again and waiting 2 months simply for a denial letter so I could get another organization to help me out and running completely out of bandages, to going into serious debt purchasing bandages... and the list goes on. 'Til this day, getting my medical group/insurance to cover anything at Stanford (where the closest EB clinic is) is hell on wheels. Nicky's hematologist requested hydrotherapy for him in early January and we're still waiting! We don't even have an appointment and I can't get anyone to call me back!
At any rate, I was speaking about the high cost.... mind you, Greg pays over $300 a month for our health insurance and on top of that we have these outrageous co-pays. It's $100 every time we enter the ER (that's why we opt for Urgent Care often enough, it's only $20), $20 every time we go to the primary doctor (every two weeks), $30 anytime we see a neurologist (three times the past month-and two more appointments this month), $30 for any rehab visit (yes, they see us for 10 minutes and they charge us $30!), $30 for any test (you do the math, the past month and including the one next week, Greg has had an MRI, 2 CATscans, plus 1 other scan I forgot the name), everyday Greg was in the hospital we were charged a $150 co-pay-this time around he was in the hospital for 4 days) and we're STILL trying to pay the hospital off from his LAST stroke!!! That time he was in the hospital for 5 days and we also had a $250 co-pay for the Rehab clinic! WHO CAN AFFORD TO BE SICK IN THIS COUNTRY???? My mother almost died in Italy for complications from an infection several years ago and she ended up being in the hospital for nearly 2 months! I will let you take a guess on how much her co-pay was. Guessed it yet? Yes, ZERO! Yes, you will say, in Italy taxes are much higher. True. But we do pay for the premium, right? That $300 a month? There is no premium there. It all comes out in the wash. When someone gets ill they don't have to worry about losing their job and the health insurance that goes with it. Do they have to wait? It depends. Is it life thretening? Then... no. Never. I waited several months for Nicky's throat dilatation, that's less than my dad had to wait for his non-life thretening eye surgery in Italy. Nobody in my family was EVER denied a surgery, they even paid for my sister's IVF!!! TWICE!!! Do they have doctors you can see right away if you want to pay out of pocket? YES! So, is it to anyone's real surprise I am for Health Care Reform? Heck, I want Single Payer. The for-profit system we have in this country is absolutely disgusting. People are dying while the Insurance Companies are making Record Profits! There should be no profits involved when people's lives are at stake. Period! How far can greed go? Seriously?

Anyhoo... I am OFF my soapbox. Next week should be interesting, Greg has another CATscan and we're interested to hear what they will find. He's telling me his cheek and his hand are still numb so he's worried about blood still loose in his brain. Somehow I doubt it, but you never know. He's been off blood thinners and he's taking new blood pressure medication, he's eating fabulously and I don't see him having any strange side effects. No more allucinations of any kind. As per how long until he, say, can walk without his brace and is independent again, that's probably a matter of several months. I don't expect him to be completely independent for at least a year or longer. He understands now that his progress is very slow and he's made that part of his consciousness. He gets it. Strokes suck, but he's alive, improving, and things could be much worse. He could have lost his ability to talk, see, etcetera.

I want to thank everyone for the kind words, and all of those kind souls that have bought my book! Every penny that I make from the sale of Special Mommy Chronicles gets directly deposited in the account that I use to pay Nicky and Greg's Medical Bills, so any little bit helps!!!

As per my new book I am writing-that will probably not be out until Nicky goes through his Bone Marrow Transplant. Yes, we do still plan to go, I am not sure when that will be, it will all depend on Greg's independence. Not only he will need to be able to take care of himself, but also, he will need to be able to take care of Connor since I won't be able to take him with me when we go. For several weeks (if not months) I will basically be trapped in a hospital room with Nicky, making sure everything goes smoothly, and even after we get discharged, we'll need to stay in the area for several weeks. It will be a huge undertaking but one I am hoping will mean the end of suffering, or, at the very least, the beginning of the end of the suffering Nicky has endured the past 13 years-probably close to 15 by then.

Okay, so I wrote a BOOK here, rather than a BLOG, my apologies. When I get going I can't stop. It's like my hand takes over and can't stop. Thank You again for all your support, I don't know what I would do without all of you!

{{{HUGS}}}
Silvia & Co

Greg/Family update March 9th, 2010

2010-03-09T10:11:00.000-08:00

This BLOG will be long and winded, but I am a writer at heart so please bear with me. I promise it won't be boring! As I sit here this morning, it's not even 7am yet, but I know it will be much later by the time I press 'publish'. So much to say, so many thoughts to gather.

Greg came home from the hospital last Tuesday and we had his first (of many) appointments with the Neurologist on the following Thursday. We had a lot of questions for him, we wanted to know if this could happen again, how did it happen in the first place, what kind of meds or foods he should avoid, if he should keep worrying about having seizures and the list goes on and on.
The stroke, as he explained, happened in the same exact area as before, deep in the Right Temporal Lobe. It's an area of the brain where they cannot get real good scans because it's so deep, but since the area was weak from the initial stroke, the combination of too much cumadin (a blood thinner he was taking) and a weak vein, who was not very flexible and elastic because he has 'Arteriosclerosis', was a disastrous combination. The vein burst, cumadin at fault. The Neurologist put him on cumadin after his first stroke because, in fact, while MRIs, CAT scans and other tests he took did not see ANY clots ANYWHERE, apparently he must have had one in the Right Temporal Lobe for this to happen in the first place, where the doctors noticed unusually (genetically) THIN veins, and wanted him to possibly avoid another one. He is, of course, off cumadin now and forever and might only need baby aspirin from now on, but not for a while. The seizure medication he was on was only temporary, while he had the large hemorrage in his brain.

What I found strange is how none of the Doctors in the Hospital were at all concerned with allucinations that Greg had while in the Hospital. He had a sleepwalk incident (and he can't even walk without help, so that was something else), a couple of disorientation episodes and one where he heard Skylar's voice everywhere. I did research it and "auditory" allucination are not unheard of in people that have strokes in that area of the brain, but I could not find anything conclusive about the disorientation and the sleepwalking. Fortunately he hasn't had a single episode now since last Wednesday night, but I for sure will bring it up to the next Neurologist appointment, one that I will make today with the experts in Loma Linda. He will have another CATscan before the end of the month, followed by another Neurologist appointment to discuss the findings. They want to make sure the blood he lost in his brain is completely reabsorbed. When he was released the last CATscan was good, so we're hoping to get even more good news.

The bad news, of course, is that he lost much of the progress he had made in the past 3 months. He can't walk by himself without his leg brace, and his arm is back the way it was shortly after his initial stroke. He still can't dress himself, nor take a shower unassisted, if we go anywhere we need the wheelchair, even mundane tasks such as getting anything our of our fridge in the garage is out of the question. Opening things, At night he has to use the urinal, and he needs tons and tons and tons of rest.

We do have an appointment with the General Practitioner tomorrow to discuss the future and do some blood tests. Presently Greg is taking better blood pressure medication, which has improved his numbers substantially (Thank You Mary for sending that new machine to us, we LOVE IT!). If he keeps his BP down like this, without the blood thinners and his cholesterol stays low, it's unlikely he'll have another stroke. He's started exercising LIGHTLY and will keep it light from now on.

This, of course, leaves me to pick up the pieces. I chuckle when I read that famous 'God doesn't give us more than we can handle" from well-meaning friends and family. Why do I chuckle? Because, well, God must think I can be two places at once and have 4 arms or something. So many times, during the day, Greg either calls me because he needs me while I am in the middle of changing Nicky's bandages, or Nicky calls me because something happened while I am helping Greg, or then Connor needs something while I do something else. I worry because I have to leave Greg alone all day while taking Nicky to CHLA, and worry about Nicky when I have to leave him alone for several hours when I take Greg to the various Drs. It's ridiculous. Last night I was on the toilet (yes, I know, TMI!!) and all THREE called me for something! WTF???? I go to sleep absolutely exhausted, with my to-do list getting bigger by the day. I feel like I've aged 10 years in the past 5 months.

Last semester, when Greg had his initial stroke, I was only taking 2 college classes and I was able to take an (unpaid) leave of abscence from work. This time around, not only I work and can't afford to take a leave of absence (I only work 10-15 hours a week, but it still takes away 2-3 mornings away from me, and I am using the money to pay off the bills so I will be able to take a 5-month leave of absence when I take Nicky to have his Bone Marrow Transplant when Greg becomes independent again-more on that later), but this time around I am taking 3 college classes, one of which has a TON of homework. Of course I am also the sole person in this house that buys and prepares the food for 4 people (yes, Nicky does not really eat, but I still have to get his tube-feedings ready), the sole person that does laundry for 4 people, the sole person responsible for cleaning after 4 people, paying bills, getting everyone bathed, dressed, take the the kids to school, make sure they do their homework, take everyone to the Hospital when they need to and run the million errands I always have to do, going to the bank, the pharmacy, buying birthday cards, organizing birthday parties, making sure the holidays are fun for the kids and the list goes on... and on... and on. Nicky of course is a challenge in itself. He needs iron transfusions once or twice a month, bandage changes daily, and even at 13, he's far from being independent. Without a cure, he might never be. All I have to say is... God has some explaining to do. If at "least" I had some family members nearby that could come on occasion and help out, even if it was just to bring dinner once a week, would help tremendously, but we have no-one, not a single soul nearby. My family is in Italy, Greg's sister is in Florida and everyone else is scattered around the world, unwilling or unable to come. It really hurts to see family members going to help other family members watch their (healthy) kids so they can go on "vacation" or just away for work, or simply to give them a break, yet they are leaving me in the dust. Gee, thanks. We are alone. That, my friends, is perfectly clear. Duly noted. Kind words are great, and they help a lot, so I am thankful for those wonderful souls who have taken the time to write me a note to lift my spirits the past few months. *THANK YOU*.

It was suggested to me that I ought to go to a local church and ask for help. That is nice, but I am extremely uncomfortable going to a church I never go to, begging for strangers to help me. That, I am sad to explain, would not be of any help to me, it would simply be yet ANOTHER source of stress. I mean.. how LOW can I sink? Having a STRANGER in my house cleaning my bathroom? No, thanks. At this point the status of my house, my laundry, is the least of my concerns. As long as they don't get too out of control, I'll get to it eventually. I have my to-do list and I'll stick to that. Slowly things will improve and we'll go from there. I will survive this, my only fear is I'll feel as I felt the other day, I truly felt I was on the edge of a nervous breakdown. If that happens, my family is TOAST. *SIGH*
While we were already planning a possible move to Italy when Greg retires and Connor graduates High School (in roughly a dozen years or so), now this has put a 'definite' on it. Greg loved Italy and suggested the move when we were in Italy 3 years ago. We have so many amazing friends and family members scattered around the world, but nobody is HERE. When Christmas and Thanksgiving roll around, we're always alone. The one city in the entire planet where we would not be alone is my hometown in Italy. My parents, my sisters, my nieces and nephew are there and much more extended family, such as my aunts and cousins. We'll never be alone again. Nicky is excited, he loves my family, and Connor, well, how exciting will it be for him to go to a University in Europe? What a lucky guy! Growing old with my sisters... yes, if there is something all of this has taught me is how much my family really means to me.

This of course brings me to Nicky. I've been following closely the progress of several children with RDEB going through a Bone Marrow Transplant at the University of Minnesota. While the results have been mixed, it seems as if for the most part, the rewards are worthed. It may not be a 100% cure, but it might eventually be that as the cells replicate with time. There are several children going through the tranplant now that are roughly the same age and form of EB as Nicky so we're keeping a close eye on it. I already contacted Minnesota, and we're on the list to go-we have no time to waste. BMTs work best on younger children, the older Nicky gets, the harder it will be for him. And, IF, God forbid, he develops any problems with his internal organs, or gets any form of skin cancer before we go, he's immediately "out". The problem is that now we're at a standstill and can't go until Greg is independent enough not only to care for himself, but to care for Connor as well, since I won't be able to take Connor with me (and to say I will miss him terribly is *THE* understatement of the year). My Fear at this point is that while we wait for Greg to improve, we wait too long for Nicky, and right at the time when it's finally the time to cure him, we might miss out on his cure, which might spell a death sentence for him. That's the harsh reality. I am trying to think that maybe we're meant to wait so they can perfect the transplants and make them less risky, but time is not his friend. So many of Nicky's EB friends have been taken away from us already, new ones fly to the angels all the time. Nicky might actually have a chance, but will this block on MY road spell disaster for him? That's what keeps me awake at night.

***I have one FAVOR to ask!! Greg always asks me if SO-and-SO read the Blog with the updates... but unless there is a comment or a 'like' (for those on Facebook), there is no way for me to know. So, please, this time ONLY, if you READ this, take the nanosecond it takes to click on *LIKE* (on Facebook) or if you read this on my original blog, do leave a comment underneath, even if just to say one or two word {such as Love, Hugs or whatever}. I would really appreciate it!!

{{HUGS}} and Love-Thank you once again for the kind words. You make my day.

Silvia

Greg Update 3/2/10

2010-03-02T10:05:00.000-08:00

Greg will most likely come home from the hospital today, I still have to have confirmation, but the Doctor told Greg last night that the latest CATscan showed that the blood is clearing up and that all the blood tests keep coming back normal. On Sunday we spoke with the cardiologist and the NeuroSurgeon and they revealed a lot of things to us that truly worried us right then and there-and made us quite angry.

First off, apparently this stroke was pretty much caused by the blood thinners. Every time his blood was taken at the lab near the Dr office or by the traveling Nurse, his #s were okay, but anytime the blood was taken anywhere else, such as the few times we went to the Urgent care since his original stroke, the blood was way too thin and they told Greg to stop taking the blood thinners for a few days, so we know there is something fishy going on there, and to fix this his Dr wants his blood taken at the Urgent Care from now on. Greg will be off blood thinners for at least 3 to 6 months (it varies depending on which Dr we talk to) and even when he goes back on them, we're going to have to be convinced he even needs the stuff, seriously!

We feel like we have been LET DOWN by the Medical Community all around. This angers me to NO END because I've felt let down by the Medical Community, time and time again as far as Nicky is concerned (writing my book now, the stories I will tell will make your skin crawl, promise!). In Greg's case, not only Doctor after Doctor IGNORED Greg's TIAs before his original stroke, but nobody told us, ever, in the past several months since his stroke that he had what they now claim he has had all along: ARTERIOSCLEROSIS. Arteriosclerosis is the hardening and the loss of elasticity of his veins and arteries. This is mostly genetic, but can be caused by undetected high blood pressure. The part of his brain that suffered from his original stroke has weak, thin veins, which were very fragile, and blood being too thin was a recipe for disaster. UGH!!!

Moving forward, the two things we'll need to concentrate heavily on for him is his diet and blood pressure. The Dr recommended walking for 30 minutes daily and keeping his exercises fairly mild for quite sometime. I am going to be looking for a GOOD blood pressure machine, any of my family/friend nurses, if you know of a GOOD, ACCURATE one that is not too pricey, please comment below and let me know which one you might reccommend. I would truly appreciate it. Especially if Target sells it, LOL. I get a discount there.

We'll need to keep his distolic (sp?) pressure in the 75 range, which may creep up to 80 in the evening, but never more than that. I have a good handle on the food part. I now shop mostly at Whole Foods (or SuperTarget-they have a good Organic selection) which is a big advantage, and he'll need to completely cut out red meat, sugar, no saturated or trans fat foods, and continue his low-sodium diet. I have a list of fruits and vegetables that help keep his BP down, so that's not going to be a problem.

The issue I am personally concerned with because I cannot control is STRESS. Greg, as everyone that knows him knows, is a Type A personality. I already told him CNN is out and he needs to take it easy, so if you talk or text him, PLEASE keep him Stress free, at least for now. That vein that burst in his brain will take MONTHS to heal and is important to make sure he rests and his stress levels stay low. I can take care of the rest. He already had some incidents of allucinations (possibly caused by the drugs administered to him in the hospital), so rest is of outmost importance now. I am thrilled he'll be able to stay home for at least 6 weeks, possibly more.

As soon as he feels a little stronger we'll start rehab again. He's lost most of the progress he had made on his arm and a good part on his leg as well, so he has a lot of work ahead of him. Unfortunately the improvements are slow, which are frustrating. He told me he's not giving up, but he does feel discouraged, especially when the Neurosurgeon told him this 'could' happen "again". We'll do everything in our power to make sure that does not happen.

Thank you everyone for the kind words and thoughts of encouragement, they mean a lot to us!!
{{HUGS}}
Silvia

Greg Update Feb. 27th, 2010

2010-02-27T18:33:00.000-08:00

Okay, this is not a good day for me to begin with, so please bare with me. 15 years ago TODAY was 'the' worse day of my life. Bar none.

I was 9 months +1 day pregnant and I found out my baby Alex had died inside of me. The doctor showed us there was no heartbeat on the Ultrasound and none of us could not believe it. The grief I experienced on that day is something I cannot really describe. I mean... I had a dead baby inside of me!

These are two excerpts from the book I am writing regarding this day, 15 years ago:

"The nurse accompanied my mother and I to the perinatal office where they have more sophisticated Ultrasound machines to confirm what they called 'fetal demise'—how I hated that word. Alex was full term; he was far from a fetus. I remember needing to lean on someone to walk, remember feeling like I was out of my body, like I was living someone else's tragedy. I did not know what to think, say or do, I was numb. I could not even cry."

"That was most likely the worse day of my life; I shed more tears that day than the previous ten years combined. Nick went home with me, and from there we called the doctor to schedule an induction. I would have to wait that whole day and that following night before I could go in. It was the longest day of my life. I just sat there on the couch, unable to do nothing, unable to eat, unable to speak, unable to do anything but cry."

Anyway... this blog is not about Alex, I just wanted everyone to know that if I sound a little emotional... this is why. I don't cry often about Alex anymore, I am not someone who cries or thinks about this constantly, but this is HIS week. It will always be.

My dad made me chuckle today. He asked me why every bad thing has to happen to ME! Well, I told him, at least it's not self-inflicted, right? By that I mean, it's not like I caused any of it. Yeah, some days I feel sorry for myself, I nag, I complain, I get moody, but those other 350 or so days of the year I am able to look at the bright side of things, I can find the silver lining, thinking what I can learn from it. I don't want to be a victim. I have my health, and I cherish it, and I am able to care for my loved ones. That's what life is about.

~~

Greg, Connor and I came home Wednesday night from having the Carotid Doppler test (among several others), all with a negative outcome except for the blood being WAY too thin. They told us that if they would not call us in the AM by 10, to call them to get to see the Neurologist-with the sole intent to get an MRI basically. No surprise here, they didn't call, so I called them at roughly 10minutes after 10AM (I am not messing around, LOL) and the lady called me back to go see a certain Neurologist nearby at 1:30pm. We went in and the Dr, thankfully, was only too willing to get Greg to do the MRI, he was very worried, even told us to go in STAT! Greg is so funny, he was feeling quite awful and wanted to do everything 'tomorrow', or 'some other time'. I insisted, mainly because I've never seen him in such pain and I was worried to death. He kept telling me that his headache was caused by him not eating well. I was doubtful. We went in to get the MRI, which took about 3 hours, and then we went home. All Greg could do was lie down and sleep. Even texting took a toll on him.

The next day I got a call from the Neurologist and he literally scared me to death. He told me, to my shock, that there was a large hemorrage on the deep right side of his brain, that he was to get off blood thinners immediately and to bring him to the ER right away and that they would need to keep him into observation in ICU for the next 3 days. He even told me that if I wasn't going to bring him in, that he was going to come and get him!!! I freaked out. I went in to Greg, told him what was going on, he wasn't happy, but we managed to get his bag packed, get him dressed and all and on our way within 45 minutes.

At the ER they brought him right in (we didn't have to wait in any line), they got him a bed in the ER right away and within one hour of him being there, they took his blood, did a EKG, a chest Xray, a CATscan, give him anti-seizure medication and hooked him up all over the place. I never, ever saw this fast work anywhere, it was astounding. Greg was actually feeling better right now that he had been in the past several days, so when people asked me if he was okay my only answer was, well, yes?

Three doctors came in to talk to us. The first was a NeuroSurgeon, very nice man, he told us that what Greg had was a hemoragging stroke. There are two kind of strokes, a clot stroke and a hemoragging stroke. This, of course, explains a LOT. Explains why his cholesterol #s, blood pressure and all were normal and he still stroked out. There were no CLOTS anywhere that caused this. So, what was the cause? The vein that burst was in the SAME area of the brain as his previous one, and that clot stroke he had last September weakened the veins in that portion of his brain. He told us no excercise could have caused this, that this is just 'bad luck' so to speak. It was going to happen eventually.

The other thing he told us that I thought was interesting was that the blood thinners might have had something to do with this, but that their main concern at this point was to make sure he stopped bleeding, that the blood in his brain was not going to CLOT because that would be very, very dangerous, they were happy that he hadn't had any seizures, so their hope was to keep an eye on his progress as to make sure the blood absorbed back into the brain. He confirmed that his headaches had been caused by the bleeding. Later Greg told me his CATscan already showed that there was less blood and that the doctors were pleased with his progress.

The second & third Doctor (both hospital Neurologists) pretty much said the same thing. I thought it was interesting that they both asked if Greg smoked or drank. Greg has never been a smoker, and hasn't had a sip of beer since his last stroke. They are all baffled that he's having these problems and he's only 50. There is no history in his family of this either, so, no real warning.

Since yesterday Greg had two blood (plasma) transfusions to thinken his blood, and he'll have at least one more tomorrow. He's had no less than a dozen blood tests to check for all kinds of things just today, but all in all he's in good spirits. I'll be able to go see him tomorrow when his friend from work comes and watches the kids. Hospitals don't allow children under 16 to go see patients, especially in ICUs, since they have patients with H1N1 up there as well.

I want to thank everyone, especially Mike & Don, for being such amazing friends to Greg. Thank you everyone for the sweet words, prayers and kind support. I will probably give an update in a few days, after Greg comes home from the hospital.

{{HUGS}}
Silvia

Greg Update 2/24/10

2010-02-24T18:04:00.000-08:00

What a difference 10 days make. 10 days ago I was so thrilled at Greg's progress, while today things look muted, as if we're in this dark tunnel, searching for the light.

The bottom line is that Greg apparently had a mild-stroke on the same area as before. He was riding his excercise bike at work when a feeling came over him of tingling and numbness over the whole left side of his body. He got a ride home immediately and at home fell several times.

Because of the way it happened he thought it was a TIA (TIA means "transient ischemic attack", often considered a warning sign of a stroke), made worse by his falls-he had a particularly nasty fall on our hard floors which was not good and left him in a lot of pain. He had several TIAs before his last stroke, so that's what he thought it was. We called his Neurologist and he stated if he got another one to immediately head to the ER, which we for certain planned to do. It was only later, when the numbess didn't go completely away, not regaining the use of his left arm and leg as before that we started thinking that what we were facing was not a TIA but an actual stroke with no warning signs.

How could this be? Just two weeks ago he had a complete workup. His cholesterol/Tryglicerides were in the "normal' range, his blood pressure had been normal for months now, he's still taking his cumadin (blood thinner), cholesterol/tryclicerides, blood pressure, and anxiety medications. We changed our diet, even going organic. How could this be? How could this be? How could this be? It made ZERO sense.

When all he wanted to do was sleep and looked lethargic that's when I was not going to wait around anymore and his Dr. squeezed us in the AM.
The first things out of the Drs' mouth was... "Why aren't you in the hospital'? Yes, yes, we heard that before. Please everyone, if you love us, DO NOT ask us why. We thought it was a TIA, Greg was convinced it was a TIA. We had talked to the Neurologist, even bugging him at home. As the Dr. told us, unless you can get to the ER within 4 hours of a stroke, the clot busting medication isn't going to work, so there was no point going in now.

From there we saw another Doctor who went through Greg's entire "stroke" history. They took his blood, took different tests, and sent us over to the imaging center to do a Carotid Doppler Ultrasound, to check the blood flow of the veins in his neck. When we arrived back the Doctor told us all the tests came back negative, and it was apparent that this mild stroke hit most likely the same part of he brain as before. We have an appointment for the morning with the Neurologist to see about getting an MRI as soon as possible, and we have another appointment set up with another Neurologist next week and a renoun expert in Loma Linda after that.

At the moment Greg is sleeping. He's exhausted. We have a boatload of questions for the Neurologist tomorrow, such as... why did this happen when his numbers are perfect? Is there a limit of excercise he can do? Is this going to happen again?

From the look of things at the moment looks like all the progress Greg has made in the past 3 months (since roughly mid-november) is gone. He used to be able to walk (albeit slowly) without his brace, but no more. He had made quite a bit of progress on his arm and hand and it's all gone. His face does not look any different and he can walk with the brace not needing the walker, which is great news.
The only thing left is that I want him to stay home for a good month to get better and all his leave and vacation is gone from taking time off from his previous stroke, so tomorrow I will have the Neurologist fill out an application for Short Term Disability. Come to find out, thanks to my friend Michelle (what a life-saver!) that the state of California is one of only 5 states that helps families financially this way. We are hoping we can work this out.

At the moment Greg is too weak to talk to anyone so I ask to please hold your calls or texts until he feels better. Give him a couple of days. If you have anymore questions, don't hesitate to text me. I prefer the texting right now if only because it's easier to manage for me! Thank you for the kind thoughts and words, they mean a lot.

{{HUGS}}
Silvia

My personal IDOL favorites of the top 24...

2010-02-18T12:21:00.000-08:00

http://www.americanidol.com/contestants/season_9/

Okay, not to brag or anything, but I am pretty good at picking the winners or at least the ones that will make it far in the competition. Kelly was my favorite from the auditions on season 1. Clay was my fave from the auditions on season 2, I picked Daughtry as my fave from the auditions on his season and I only had eyes from Adam last season after the auditions just to name a few ;-)

This season I truly believe Aaron and Katie will go FAR!!

Aaron Kelly

16 years old

Sonestown, PA

Casey James

27 years old

Fort Worth, TX

Crystal Bowersox

24 years old

Elliston, OH

Katie Stevens

17 years old

Middlebury, CT

Lacey Brown

24 years old

Amarillo, TX

Michael Lynche

26 years old

Astoria, NY

Siobhan Magnus

19 years old

Barnstable, MA

Tyler Grady

20 years old

Nazareth, PA

Greg Update 2/15/10

2010-02-15T12:08:00.000-08:00

I can't believe it's already mid-february. Where does time go?

So... yesterday we had our Valentine's Day. Lots of chocolates. Connor probably had the best time of all. I worked most of the day so I was exhausted when I got home. I put my glittery v-day hat on and cooked Pizza Margherita and Shrimp. That's as close to a V-day dinner as we'll see in years to come. Dinner out? What's that?

Greg is improving. Yes, it's slow, but it's happening. I notice he walks a smidge faster and he can do most things on his own, or, at least, tries to. When he can't he thinks outside of the box, it's funny. His arm is possibly what is making the slowest progress. He leaves a bit earlier for work on most days so he can go to the gym there. He was happy that he's now able to lift some weights with that arm, but it's still incredibly painful to move that arm behind his head. We're working on it. I bought a heat massager and he really likes it, he can feel the difference the next day.

Greg is now driving himself to work one or two days a week, that is amazing! The other days his friend gives him a ride. It works out quite well for him.

His diet of course had to change since he got home. While his cholesterol and triglicerides #s were not particularly off the charts when he had his stroke (which was caused by that genetically thin vein), and his number have since dropped to the normal levels, we still got to work in finding foods that were low in sodium and fat/cholesterol content. Then we watched the documentary "Food Inc." (nominated for an Oscar BTW) and "King Corn" and that was it. I can't believe what is happening with the food supply in the US, it's disgusting. We're now supporting REAL farmers and supporting OUR health by buying organic foods all around. Greg was in the thinking that Organic foods would not taste good but... guess what? It tastes BETTER. I saw a bumper sticker the other day that said: "Buy Organic Food... your grandparents called it "food"." Greg had a chuckle! It tastes better because it does not have any pesticides, antibiotic, growth hormones and any of those ingredients you can't pronounce. Does it cost more? Sure, a bit. But to us is 100% worthed. We never eat out at restaurants anyway, so we have a budget for it. We can make cuts elsewhere. Our health is our #1 priority.
For those of you who have seen the movie "SuperSize Me" about a guy who ate at McDonalds every day for 30 days, it's really a no brainer. Fast food is not good for you. Even Subway, heavily advertized on shows like the Biggest Loser, is not exactly health food-the sodium is sky high. Greg was shocked-he ate at Subway at least once a week. No more. I buy low-sodium deli for him to make sandwhiches with.
I was raised in Italy so I never ate that way, my grandma had a mini-farm so I grew up eating tons of veggies and fruits, fresh eggs and chicken. I always cook at home and rarely I eat out (and my #s have never been out of range my whole life), but I know the general population in the US has some learning to do. I know Greg sure did. We feel empowered and with our health under control we'll never have to worry about strokes or heart attacks ever again. It was a wake-up call. There is an old saying in Italian that says that 'not all bad things come to hurt you' and we're starting to feel that way now.

I want to thank everyone that always asks about Greg or Nicky, they are my life so it means a lot to me when other people care.

{{HUGS}}
Silvia and Family

Life in the Antelope Valley...

2010-01-11T09:39:00.000-08:00

Believe it or not, this is NOT in the middle of nowhere! Oh the other side of my little green car there is plenty of city, houses, business and more.

In fact, we don't live very far from here. I take this road (Avenue H) from my house to go to work, college, or just to go shop, because the road just below (yes, you guessed it, Avenue I) is full of traffic, stoplights etc.

This is around 20-30th street East, if I keep going, around 100th street East (or more, at the moment I can't remember exactly) the road basically dead ends in one with a fake gas station and hotel, used often in many TV shows (Biggest Loser started one season there for instance), music videos (one of Jessica Simpson comes to mind) and even major motion pictures. I remember seeing episodes of CSI with the Joshua trees in the background... hello? There are no Joshua trees in Vegas! In Palmdale, not too far from here, they built huge hangers to film movies such as Pirates of the Caribbean, I remember these pirate looking guys shopping in my Target store, pretty funny stuff.

So, why am I showing you this? Mainly for the blue sky! Look at that! Just because I live in the Los Angeles area, where smog is so thick at times it's hard to see 20 feet in front of your face, we live over the mountains, which means the smog gets trapped there and we live smog free.

This is just a little peace of our lives.

Can't help but wonder...

2010-01-06T23:19:00.000-08:00

I am lying here awake trying to google an answer to what happens to me at night to no avail.

For years now, on and off, starting after my divorce in 1999, when I am ready to go to sleep, and after I turn off the TV and turn off the lights, I truly feel as if what I can only describe as 'someone that I can't see' gently gets into my bed and lies next to me. It never happens if someone else is in bed with me, my husband or my son, only when I am alone. For a time I would literally wait for it to come and then I felt 'safe'. It's really kind of bizarre.

Several months ago some spooky things happened in my bedroom. I heard noises, I truly thought my son came into the room, but all I saw was some small moving faint lights. I was a little spooked so I told 'it' to go away and to please stop scaring me. I never felt that presence again until last night! I was shocked. When my husband came home (around midnight)it felt like it got up and sat at the edge of the bed for a while and then got 'up' and left.

Is this my sleeping angel? Can't help but wonder...

EB Awareness Animated Incredimail Letter

2010-01-05T15:25:00.000-08:00

I made this one a while ago... so cute!! The dolly is animated and it says 'Epidermolysis Bullosa' underneath and a link to ebinfoworld.com in the credits.

DOWNLOAD HERE

HUGS!

Nicky & EB. What it is, how he's doing.

2009-12-31T18:53:00.000-08:00

We're at the dawn of a new decade and there are quite a few family and friends, including some I've reconnected with recently, or within the past couple of years who are not sure what Nicky has or what's going on with his health, so I figured I'd clue everyone in because in the coming years I will need your support more than ever.

In a nutshell, Nicky was born with a skin disorder that falls under the umbrella of skin diseases by the name Epidermolysis Bullosa, a fancy Latin term meaning Blistering of the Epidermis. There are three main forms of EB, Nicky has the Dystrophic form, the form that makes the deepest wound-a wound that travels down to the dermis, also similar to 2nd degree burn-like wounds. His form is officially called 'Recessive Dystrophic' because the gene that causes the condition is a gene that is generally recessive, people can be carriers but cannot have the condition unless two recessive genes are inherited, one from each parent, in which case one is forced to become dominant. This is why RDEB is so rare, one in a million! So, when I say my angel is a one in a million, I truly mean it!

At any rate... I will not bore you with the trials and tribulations we've been trough the past 13 years, insurance companies denying bandages, delaying surgeries, wondering 'why' I needed to take Nicky to a specialist and the list goes on, and on... And on! Needless to say I've learned to dislike the current Health Care system in this country quite a lot and as you can imagine I am in full support of reform. I wrote all about our experiences in my book 'Special Mommy Chronicles', available at Amazon ;-). I am writing a quite intense book about Nicky's life as we speak, but since I want to include a cure in there (thinking positive, I want a happy ending) it will be a while before I finish that one, but, I digress.

I always get the question if Nicky's getting better. Well, the answer is yes and no. Yes because his general skin, the skin that is in areas that rarely blister is quite tougher than it was when he was a baby. Unfortunately the areas of constant rubbing or with joints, such as knees, armpits, elbows, wrists and ankles are a disaster to put it mildly. His knees have been open wounds since he was one year old. He itches uncontrollably, is in a lot of pain, and his bandages need to be changed very often. Nicky has a g-tube, meaning he gets his nutrition via a tube in his stomach, I give him about 4 cans of Nutren 1.5 & 2.0 overnight and he drinks and eats mushy stuff during the day. His esophagus is compromised and blisters and shrinks so he has to be careful. Every so often I have to take him to Stanford to get his throat enlarged. He also gets iron/blood infusions once or twice a month at CHLA (Children's Hospital of Los Angeles). His fingers and toes web and contract, and he's in a wheelchair/powerchair when we have to go anywhere because no matter how much I pad his feet, they hurt to walk on them much.

When Nicky was born in 1996 there was NOBODY looking for a cure. There was absolutely nothing going on. Zero, Zilch. It's only been since the late 90s that things started happening. Stanford was looking into skin grafts (which they still are, ten years later), Italy (yes, Italy!) started working on gene therapy (not sure what that means, I am assuming also skin grafts). I remember having many long talks with Lynn Anderson, the wonderful woman who started the EBMRF because she wanted a cure for EB so badly (two of her children died from EB) and it was apparent to me a cure would take many, many years. The problem with children with RDEB is that time is not their friend. Children can die anytime from infections, and as they grow older and in their teen years they have to worry about skin cancer and the problems with malnutrition, which Nicky does not have thanks to his g-tube. I only know of a couple of patients that are over 40 right now, maybe a couple in their 30s. While I know Nicky's health is good overall at this moment, the unknown is constantly at the doorstep and something I rather not think about and I rather concentrate on a happier future for my boy. I KNOW it can happen. Hope it's my big motivator. I had to step away from being part of support groups because I could not handle hearing of anymore children dying, which was something I would hear constantly. It turned me into an angry person and I did not like who I was becoming. I am in a much better place now. As you may surmise, knowing other children (in many cases younger!) with the SAME condition would constantly die it's an extremely hard piece of news to take. As many of you know, I buried my first baby, Alex, who was stillborn at full term, and the pain I felt it's the worse feeling in the world bar none and I never want to feel that way again.

Three years ago an amazing EB mom, who had done a thesis on Bone Marrow Transplants started wondering why BMTs were never tried on children with EB. She got together with a Dr in Minnesota who headed a BMT unit and they started working things out. Since then several children have done the transplant, all with a sibling match donor (which Nicky does not have-Connor, since he has a different dad, is not more likely to be a match than the general population) but in 2010 they will be starting transplants with EB children that will require a Bone Marrow Donor or a Cord Blood Donor so we'll be eagerly awaiting to see what happens. It's important to note that while the children that have done the BMT are not cured overnight. The BMT is a long and tedious procedure and it takes time to see an improvement. The longest it's been since the transplant, the better the patient is.

I strongly believe that things happen for a reason, so I've taken it as a sign that now I could not manage to take Nicky to have his transplant because of my husband's stroke. It will be a year before he's better and I can leave him for a few months to go do this. This year will be crucial to see what we decide to do because many things are going on. Not only we'll see what happens in Minnesota, but we know that they started BMTs with reduced intensity in New York at Columbia University which might be a much better/easier option with Nicky if they work. I also know that they've made some strides in Italy and they stated in their National Telethon this month that they will have gene therapy within the next couple of years...and we wouldn't mind being stuck in Italy for a few months, ya know? We'll be with family rather than alone in the middle of the US. I am still a citizen and I can make Nicky a citizen anytime I wish.

We are also keeping an eye on Stanford. The EBMRF (which funds EB research at Stanford) was able to get many celebrities involved in their fundraising. Last year with Oprah's Big Give they were able to raise several million dollars, and by having Courtney Cox as their spokesperson they ensured many other celebrities being involved, such as the Arquettes, Jennifer Aniston, Eva Longoria, Brad PItt and others. Their fundraisers are always celebrity studded and they have been bringing us much needed awareness. Stanford, as I hear, is close to getting FDA approval on their genetically 'cured' skin grafts so we're keeping an eye on what's going on with that. The way I understand it, they would take a skin sample from the patient, genetically alter it in vitro and then grow enough to cover areas such as knees, ankles etc. As I hear this is still a couple of years away at best.

I am still leaning toward a BMT all things considered-I know this is a risky procedure, but skin grafts would only heal that part of the body, they would not cure anything related with his esophagus and he'll still have EB, while a BMT, even if it might take years to completely take, would ensure an overall treatment. Even if this meant in the end he would only be 'cured' 50% overall, this would be FANTASTIC in our book.

This is however, a hard decision to make because we would be away for nearly 5 months. Connor won't be able to go with us at least at first, and even if I know we could stay at the Ronald McDonald's House, that's still $15 a day plus food. This does not include co-pays which I hear are going to be astronomical. Hence... We are not looking into a few thousand dollars, we're looking at needing to raise somewhere between $25-100k. We do not have this kind of cash, so before we go we'll need to figure out how we'll manage this. Anyone have any ideas?

Thank you everyone for your continuous support. Your love and light means more to me than you'll ever know.

Hugs,

Silvia and Family

P.S. I read this to Nicky and he gave me his thumbs up. ;-)

Please vote for my video!

2009-12-29T15:46:00.000-08:00

http://extraordinarymeasuresthemovie.com/#/quilt

it's the first video on the top left corner w/ words 'imagine'

Thank you so much!!!

Greg Update December 28th 2009

2009-12-28T19:29:00.000-08:00

It's been a little while since I last updated and I have a few minutes so I thought I'd catch everyone up with how Greg is doing, since we constantly get asked.

First and foremost, I must say, the improvements are there but are extremely slow and hard if not impossible to see day by day. It's only after a couple of months that I realize that he used to do something slower or not at all. For example, his walk used to be very, very slow and now he can make it to the alarm box within the 30 seconds from the front door. Granted, the front door is not very far from the front door, but 30 seconds would have been impossible 2 months ago. He does use his leg brace when he goes to work but around the house he goes solo. He's even not always using his walker which is amazing, it depends on how tired he gets.

We had a long talk about how quickly he gets tired the other day. I was worried because on the 3 mornings I work per week he has to be up and showered by the time I leave (8:30am) because I have to help him get dressed. There is no time to do that when I get back home because is a 'Hi and Bye' and he's out the door. On those days he gets extremely tired, but I am glad that it's only going to be for 3 mornings per week until I go back to school, and thankfully that won't be until the second week in February. Hopefully by then he'll be a little better.

Going back to work I can tell has made a big difference in his spirits. A friend from work gives him a ride to and from the base. Before he starts working for the day (at his temporary desk position until he gets better) he hits the gym and works out his leg and arm.

His arm seems to be the one thing that is dragging. We do semi-daily arm excercises and he works it out at the gym, but there isn't a whole lot of improvement to report. The doctor told us that his arm would be the slowest to get back and his hand the last (for his fine motor skills). Books and Doctors have told us that it would take anywhere between 6-24 months to get everything back so as long as we/he keeps up with his exercises he should ever so slowly improve.

Having said that he's taken it upon himself to do as many things by himself a possible. He's mastered the dishwasher and Connor is a wonderful help with that. He tries to take out the trash and Connor once again helps his daddy. The Physical Therapist told me to only do things for him when it's clear he can't do them himself, so he's tried to do as much as he can on his own. When Greg is home in the evening (Greg does not usually get home from work until midnight) Connor snuggles with his daddy and they go to sleep together. They are so cute I let them be and I go sleep in Connor's car bed, LOL.

Thank you everyone for the kind thoughts. This was a hard Christmas for Greg due to his mom passing (sigh) and the stroke has made him very emotional. We can't wait for 2009 to be over with. I've already got the Spumante! And the Panettone, of course. I am Italian, I love the stuff. Good riddance '09!!!

Hugs and Kisses!!!

Silvia & Co.

Epidermolysis Bullosa Awareness Incredimail Letter

2009-12-12T11:51:00.000-08:00

Here's a letter I made a while ago and never uploaded to the site... it's FREE and you can download it here...

DOWNLOAD

More EB Awareness Incredimail letters are available at this link:

http://www.ebinfoworld.com/incredimail.htm

Clearly I haven't updated this page on the website in a while... how embarassing! :-( That's what happens when my plate overflows. My apologies. The website is on my short list of things to do before Spring Semester starts in February!!

{{{HUGS}}}

Where to get info about Marybeth & Samantha

2009-12-06T11:50:00.000-08:00

My friend Marybeth and her daughter Samantha (with EB like Nicky) were recently featured on the Discovery Health Channel show called "Truth Be Told - I Have A Child With Special Needs".

You can follow Samantha Sheridan's Bone Marrow Transplant Journey if you go to
http://www.caringbridge.org

All you have to do is register with a user name and password; once you get that just go to "visit a web site" and put in samanthasheridan just like that, all lower case, and all together as one word.
Sam's mom have been keeping a journal of their progress.

Free Bon Jovi Wallpaper

2009-11-22T11:19:00.000-08:00

Okay, I did this as part of a class project I am still working on, but I thought it would make a cool wallpaper, so, here it is. It's 1600 x 1200 full size.

DOWNLOAD HERE

{{{HUGS}}}

Silvia

Greg/Nicky update 11/20/09 (LONG, sorry!!!)

2009-11-20T16:53:00.000-08:00

Today is Friday, and poor Nicky is still miserable from a DOUBLE corneal abrasion. Actually, I should re-phrase that and call it something else entirely, sorry. His eyes are OK. The insides of both his eyelids are not. I know, weird. When he was little he had a TON of problems with his eyes, a very small scratch would make his eye red and painful to light, so much so he wouldn't open his eyes for days. He would sit in his room under the blanket with the room all dark. Now, and for the past several years, when he finally opens his eyes (which is only a few hours later, albeit still painful to light), his eyes look perfect, not a red streak anywhere, while the eyelids look all puffy, red and purple, with matter oozing out. There is no question that during the night he rubs his eyes and voila'. Sigh. We keep this from happening by using soft (very soft!) mittens on his hands at night, but during the winter when the heater is on we have to use the humidifier as well, and I forgot to turn it on the other night. Sigh. I blame myself, although in the past, even with the humidifier and mittens are on, occasionally this still happened. I *hate* EB. I can't say that enough.

Anyway... he'll deal with this for another couple of days and then he'll get better for sure. So upsetting since he seemed to be doing so good lately.

OK, on to Greg. He fell a couple of times recently on the same hip, and at first it didn't hurt too bad, but 2 nights ago he rolled over on that hip and it started hurting so bad he didn't sleep at all last night and I had to give him Tylenol w/codeine to ease his pain. Like trying to recover from a stroke is not enough! We have an appt on Monday in the event the pain does not go away. There is no bruise and externally you can't see anything, but if the pain does not go away there is a possibility of a fracture, so we've got to be careful about that. He was making good progress but now it's too painful for him to do any of his exercises, so it's all a bit discouraging. He's still supposed to go back to work in 3 weeks? We'll see I guess.

I must admit, for me, this is a bit too much. Connor is still too young to be independent and needs me so much and I get frustrated not only because it's hard to see your family in pain and needing you so much, but also because it's all a bit too much for my brain to comprehend everything that needs to be done. I make lists and lists and lists and I always forget something. Always. I go halfway across the house and then I forget what I am supposed to get/do. I can't remember the last time I was able to watch any TV show without interruptions. I am thankful I am forced to go to 'lab' for my computer classes at the college so I can dedicate myself to my schoolwork because there is no way I could do that at home. On most days I think I am okay, I try to stay positive and who cares if there is a ton of laundry to do and dishes are piling up in the sink, but there are times like this morning when all I want to do is curl up and cry. I have to sit and watch family members who have healthy kids and healthy spouses get constant help, who have parents or siblings nearby, or extended family members able to come and help when there is no "real" need. I had a good cry watching 'Desperate Housewives' a few weeks ago, when Susan's daughter was in the hospital, everyone was bringing her food. I spent oodles of time in the hospital, and nobody brought me food. I lost 5lb in one week. I have no close friends or family here and that's just how it goes. My choice I suppose, or just how things worked out. Something we call life.

Oh well, thank you for listening me vent. I am okay, really, just know that if you come to visit, come to visit us, not the house, OKAY? LOL. Not that anyone ever comes to visit anyway.

On to more fun stuff. Tomorrow sometime I will upload my college class INDESIGN project (basically a 6 page brochure full of pictures) about Ivrea's Carnival, my hometown famous carnival which features the biggest food fight in the world, the Battle of the Oranges. It came our really cool, so I hope I get some feedback. :-)

Next week is Nicky's 13th birthday, as usual we'll celebrate it on Thanksgiving. My boy a teenager? Hard to believe. I am going back to work on December 7th, to the holiday rush no less! It's actually good, it will keep me busy and my mind off stuff. School is over on December 12th and then I won't go back until February. I am looking forward to that.

{{{HUGS}}}
Silvia and the Gang

Free Animated Dolly Letter

2009-11-15T10:53:00.000-08:00

Here's one of my new Incredimail letters I made this past week for members of my Incredimail group. Here's the link if anyone would like to join!
http://tech.groups.yahoo.com/group/princess_silvia_incredimail/

DOWNLOAD HERE

{{{HUGS}}}
Silvia

Free Bon Jovi Incredimail Letter

2009-11-09T06:58:00.000-08:00

Here's one of my new Incredimail letters I made this past week for BON JOVI fans! Their new album drops on TUESDAY!!! Whoo-eee!!!

DOWNLOAD HERE

I have a lot of FREE incredimail letters on my website here:
http://www.sleepingangel.com/graphics_im.htm

I have over 800 letters that are NOT on the website which I am working to make available soon, stay tuned!

{{{HUGS}}}
Silvia

Greg Update November 7th 2009

2009-11-07T20:43:00.000-08:00

Greg had the first official outpatient Occupational therapist appointment this week. While he's making progress with his leg because he's forced to use his leg if he wants to get around (and the excercise bike also helps), his arm is another story entirely. We decided that the Therapist should solely concentrate on his arm to get the most out of it. The OT says that he must try to involve his left arm and hand in everything he does and gave Greg some excercises to do daily. He also has several excercises that he does for his leg on a daily basis. He told me he has noticed some muscle tone coming back on his leg and I see some slight improvement on his arm. He told me that today for his first time he could put his hand in his pocket easily, before it was a challenge. The OT will continue most likely for at least 2 months, once a week, and he's also getting bloodwork done weekly to check for a few things, but most importantly for the cumadin levels, as to keep his blood at the right concentration, not too thin, not too thick.

His cholesterol check came back and his numbers are great! He went from 250 to 165! That's amazing in just one month. Then again, I am cooking, so he's pretty much stuck with what I am serve, which is only white meat, veggies, fruit, pasta, bread and low fat stuff. I know how important nutrition is, and I've been working at it all my life. I get my #s drawn every year and they have never been out of the normal range. I think that while he's always worked hard at staying healthy, he might have overdone the red meat thing. That, plus a little dose of bad luck, since scans show he has no blockeage anywhere else, brain or heart. He's lost 20lb since the stroke and I personally think he looks amazing. He got his new laptop and he's loving it.

Greg plans to go back to work in early to mid-december and I think he'll be able to do it. That's when my leave ends as well. By then my classes will be over for the semester and the spring semester won't start until early February. This means I won't go back to have a FULL schedule until then, which I think is plenty of time to make sure I am here as much as possible to assist in his recovery. At work Greg at first will be doing paperwork or study until he gets stronger. They have been wonderful and very helpful. One of his co-workers told him he can ride with him to work. Greg can drive since his right hand and foot are good, but we want to wait until he's stronger to do that as well!

Not sure if I will update again real soon, most likely in a couple of weeks if there is significant improvement or news.

{{{HUGS}}}
Silvia

Official Blog... here from now on.

2009-11-02T20:59:00.000-08:00

My official BLOG will be here from now on. This will be a mix of my life plus some scrapbooking/incredimail freebies thrown here and there.

This past month has been difficult to say the least, after Greg's stroke I had a mini-nervous breakdown. It wasn't pretty. I somewhat recovered, but it's going to take some time. I don't like that side of me when I have meltdowns, thankfully I see it very rarely. Greg is improving daily, his spirits are up and I hope the Phisical Therapist will be of some real help.

Nicky had his surgery and as of today he's fully healed. He can eat a lot more. He's been able to eat some Halloween candy, which is a first! Imagine that. I am still trying to get this darn transplant going. My last challenge is to locate the dermatologist that originally requested the diagnose, those records are who knows where and they are badly needed. We'll see how that goes.

Connor is my angel. He had a bad infection in his mouth but it's healing so I am happy about that. I hope he won't be too behind in school.

As per moi, my LOA ends in early december. This semester, which flew compared to the Spring semester, is going on fairly smoothly. Next semester I am hoping to be able to take math and photography or photoshop along with a history class of some sort or art appreciation. All required for my degree. Registration is November 20th.

I will still write updates in FB, but I wanted to make sure to use this as well.

{{HUGS}}
Silvia

My Blog

2009-02-09T09:51:00.000-08:00

I had some asking if I keep a 'blog' per se where I talk about my life with my son with EB etcetera... I do, but I don't post often, I just don't have the time anymore. However, since I've kept this blog for the past 3 years, it does go back that whole time and I do have written tons in the past.

Here's the link:
http://blogs.myspace.com/ebmom

I am also on Facebook, I am there more than myspace as of late. Just look for Silvia Corradin... there are 4 of us, but I am the only one that lives in Los Angeles...

Hugs and Happy V-day!

NEW Freebie ALLBOY WordArt/Elements

2009-02-04T11:22:00.000-08:00

This is a preview of the Freebie... it's a 3600x3600 PNG file at 300DPI. DOWNLOAD HERE!

Enjoy!

Freebie "Birthday" WordArt

2009-01-29T17:24:00.000-08:00

Hello friends! A couple of new word arts for you today... hope you like!

Leave some love... here's the link!

DOWNLOAD

Freebie 'Sister' WordArt

2009-01-22T15:39:00.000-08:00

Here's a new Freebie for you today, I made this for a scrap-page I made with my sisters...

DOWNLOAD HERE!

2009-01-13T16:56:00.000-08:00

Hello everyone!!

Well, in honor of the American Idol Premiere tonight (whoo-hoo!!) I figured I'd make sure ALL of my Free American Idol INCREDIMAIL letters were on the website, so I added the 3 that weren't on there. I will start updating the main website again soon, I have over 300 letters that are not on there, so I've got my work cut out for me, LOL!!

Here's the link!
http://www.silviaskingdom.com/ai_wallpapers.htm

Matching Blank Tags are here:
http://public.fotki.com/ebworld/silviastags/blank_tags/american_idol_blank_tags/

Simply 'click' on the letter that you want and it will automatically download in your style box.

As I update other parts of my website I will post the link!
Hugs!
Silvia

Here's the three new letters! There are now 143 American Idol themed letters on the website now!

Get them and 143 other here! http://www.silviaskingdom.com/ai_wallpapers.htm

2009-01-12T17:37:00.000-08:00

Hello friends!

Long time no new stuff. Today I will start by having a new wordart freebie once a week! I hope you like it!

Here's the Preview:

This is a PNG file 3600 x3600 at 300dpi
You may DOWNLOAD this FREEBIE HERE

2008-11-17T09:33:00.000-08:00

Well, 4shared deleted all my files because I haven't uploaded anything new in 30 days... nice, huh? Oh well. I will revamp this blog soon, I will probably just concentrate on WordArt which is my passion.

I upload all my scrapbook pages HERE if anyone wants to take a peek.

HAPPY THANKSGIVING EVERYONE!!!

2008-09-10T10:43:00.001-07:00

Here's a new FREEBIE brown mini-kit for you. It comes with 2 patterned papers, a ribbon and two buttons. You may download it here:

DOWNLOAD LINK

This is what I did with it!

Enjoy!

Silvia

2008-09-02T15:09:00.000-07:00

Here's a preview of the FREE QuickPage that I've made today.

DOWNLOAD HERE

This is the page I did with it!

BIGGER VERSION HERE

Enjoy!

2008-08-26T17:10:00.000-07:00

FREE GREEN MINI-KIT for you today! To get it CLICK HERE!
It includes two pages, a matching button and a matching ribbon.

Also today, a Free Word-Art as well...

CLICK HERE TO GET IT

And here's the page I made with my elements! My sweet boy!

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/may04.html

Enjoy!

Silvia

2008-08-21T16:44:00.000-07:00

Here's some purple elements... matching paper, ribbon and button you can make a page with. To download this FREEBIE, CLICK BELOW!
http://www.4shared.com/file/59949527/899c448a/purplestuff.html

Here's what I did with it... pictures of my sister and her husband through the years. COOL!

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/misc-years/lorenaenrico.html

2008-08-11T15:49:00.000-07:00

I am still learning, but here's 3 FREE coordinated matching buttons for ya.
CLICK HERE TO DOWNLOAD THIS FREEBIE!

Here's the page I used these buttons on that I made using PSP without any elements per se, just the word art!

BIGGER VERSION HERE:

http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/jan20062.html

2008-08-02T15:00:00.000-07:00

Okay, this is my very first attempt at a quick page!!! Please be kind, LOL.
CLICK HERE TO DOWNLOAD THIS FREE QUICKPAGE!!!

Here's what I did with it. My sweet boy was only 10 months old in this picture! Awww...

BIGGER VERSION HERE:

http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/july042.html

2008-07-31T13:46:00.000-07:00

Here's my newest WordArt Freebie!
CLICK HERE TO DOWNLOAD!

And here's the page I made using this word art. I may have been only 6 years old in 1970, but I do remember this vacation my family took rather well... hard to believe that was... GASP... almost 40 years ago? I used a Quick Page for this one as well.

BIGGER VERSION HERE:

http://public.fotki.com/ebworld/personal-photos/scrap-pages/1970s/summer70.html

2008-07-24T13:03:00.000-07:00

This is my newest WordArt Freebie, "Brotherly Love".
CLICK HERE TO DOWNLOAD

Here's a page I made using this, my boys!!! I used a QuickPage.

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/feb043.html

2008-07-19T15:32:00.000-07:00

Since my SD just graduated High School and I was working on a page, I thought this was appropriate!
CLICK HERE TO DOWNLOAD THIS WORD ART FREEBIE!

This is the page I made using this Word Art. I used background papers and elements coming from 4 different graduation kits I have, I even changed their colors to match my SD's gown, LOL. I think the page came out cute!

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/june08.html

2008-07-18T15:55:00.000-07:00

It's only fair that I gave equal time to GRANDMAs here! To download this FREE WordArt, click below:

DOWNLOAD

Here's a page I made using this WordArt... sweet or what? It's my mom with my niece last year when I went to Italy to visit during my parent's 50th Anniversary! I used a quickpage and I added some elements to it as well.

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/aug2007.html

2008-07-16T14:48:00.000-07:00

Here's a page I made using the Word Art I created. The great thing about the word 'grandpas' being 'grey' is that you can use the hue/saturation feature in PSP or Photoshop and change the color of it to fit your page's needs. Cool or what? I made this page with photos of my dad playing with my son Nicky. Very cute! I used a background page with just a couple of elements, I mainly used a mask to create the effect around the photos.

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/dec20012.html

This second image is a vintage picture of my dad when he was 23 years old! Oh... the handsome devil! I used a quickpage for this one.

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/vintage/apr1953.html

2008-07-15T16:21:00.000-07:00

Something new today... a FREEBIE to top it off! It's my FIRST one, and it will be the first of many, for sure.

I was looking at a picture of my dad with my niece and nephew and my heart just melted. My dad is such a special, amazing GRANDPA! I am so sad he's not there for my kids, it truly breaks my heart. My dad is and will always be a little kid at heart, so that's the reason for this WORD ART!

DOWNLOAD THIS FREEBIE HERE!!!
It won't be available forever, so hurry!

MAKE SURE TO LEAVE SOME LOVE!!! :-)

2008-07-10T16:34:00.000-07:00

Wow! Has it been this long since I last posted? That's what happens when life takes over I guess, LOL.
This first page is a QP of course, I have no time to do pages in any other way lately. This picture was taken in 1998 when I went to visit my aunt Marisa (my mom's sister, which just happens to be my GodMother, my middle name is Marisa after her) in Aosta, in northern Italy with Nicky and my dad. My mom took this beautiful picture!

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1990s/aug98.html

This second page is three pictures from our summer visit to the beach of my family in 1968. GASP-40 years ago! Yet another QP.

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1960s/summer68.html

2008-06-16T07:01:00.000-07:00

Here's a page I made of Nicky with his daddy, it's another Winni Scrapbooking lesson. This was the last lesson per se, and I am amazed how much I learned. Now I will be learning how to make scrapbook elements, look for my results here in my blog!

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/lesson35.html

Second page I've done with Nicky's help! It came out real cute I think, this was Connor's FIRST birthday!

BIGGER VERSION HERE:

http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/sept04.html

2008-06-12T14:12:00.000-07:00

These new pages today I did with Nicky's help! He picked the QuickPage and the pictures to use.

The first one was a trick we saw on the Scrapbook Memories TV show, he watched it and wanted me to do it, LOL.

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/feb042.html

The second one Nicky just decided to do a page from old Camp pictures, so, voila'.

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/june05.html

2008-06-08T09:28:00.000-07:00

I talked to mom yesterday and she keeps wowing about these pages, so that entices me to keep it up. I've been thinking how to approach this. I guess what I need to do is go back to ALL my photos that I have lying around. My 11 year old told me he would help me :-). I will start by making piles of photos by decade. I will then tackle the oldest photos and scrap those the old fashioned way, BUT, the best ones I will scan and digiscrap. Once I have a certain amount of pages I will start scrapping either by person or, more likely, by year, or both I guess! I will start in July when we come back from CAMP. It should be a HUGE undertaking. I already scrapped all my baby pictures, but Nicky's... I stopped scrapping for lack of time in 1998, so I have 10 years worth of pictures that are just 'everywhere'. I feel bad about it, but at least I am starting now!

This first page... awww... it's some of my favorite pics. Connor was just a peanut. A quickpage from somewhere. Wish I knew where! Sorry!
BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/nov4.html

Second page is my peanut once again, a few months later. Another QP...

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/jul04.html

2008-06-06T17:22:00.000-07:00

If this page would have a title, I would call it 'The last time I saw you'.
Paola was one of my best friends growing up. While I did not meet her until my teen years, we became fast friends. We had so much in common it was scary. We liked the same music, liked the same guys, we watched the same shows (CHiPs was our 'drug' of choice, kind of ironic, since I just bought season 2 on DVD today! I waited 30 years for this!) and I could go on. She was the niece of a fellow DJ at the local radio station in Italy where I used to do the 'dedication' show on Sundays. Yes, I was a DJ, did I ever mention that? It was eons ago. After I moved to the US we use to write each other every week for years and years.

At any rate... Christmas 2001 was the last time I saw her on one of my trips to Italy. About a year later she went to the doctor because she could not get rid of her headaches. The doctors found a malignant tumor in her brain, and she died on February 29th, 2004, about a year after her diagnose, just a few months shy of her 39th birthday. Heartbreaking? I can't describe, really. If it would not have been a 'leap' year, she would have died March 1st, which is my Alex's anniversary of his birth/death. What about her daughter? Yes, the little girl in the picture, the one that took her 8 years to have after infertilty treatments and two IVFs that didn't work? Her little girl is being raised by her husband's parents, which is also ironic, since she herself was raised by her grandparents after her mother abandoned her.

While admittedly we weren't very close in her last years, I will never forget her sweet smile and how she brightened my life. I will miss you forever PAOLA!!!

Page was made from a kit called "Floral Frenzy" by Linda Walton of 3Scrapateers.com. Her BLOG is here:
http://bonscrapatitdesigns.blogspot.com/. I did use a couple of other elements (the alpha set and the tripleframe) from other unknown sources.

BIGGER VERSION of this page is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/dec01.html

2008-06-05T10:48:00.000-07:00

I did a couple of new pages today. This first one is a Winni Scrapbooking lesson-it's my sister Lorena with my dad on her wedding day in 1984. This is a rare occasion, my sister is a typical tomboy, so to see her with make-up and a dress on... all I can say is WOWIE!

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1980s/lesson34.html

Second photo... I was in my favorite city in Italy, Firenze, in 1998. Hard to believe it's been 10 years! BOO!

BIGGER VERSION HERE:

http://public.fotki.com/ebworld/personal-photos/scrap-pages/1990s/sept98.html

2008-05-30T18:52:00.001-07:00

After a while without doing anything, I got the bug today. I have mucho things to do, but no gauze so I have some extra time.

FIRST ONE!

This is my grandma, or, as I call her, NONNA Rina. This photo was taken in 1978 I believe, she was 75 years old. She lived to be 101!

Used a quickpage for this one, no time to do it in a more creative way today.
BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1970s/1978.html

SECOND ONE!

My mom Laura on her honeymoon in Venice with the pidgeons! Love this one. Another quickpage...
BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/vintage/aug57.html

THIRD ONE!

Greg and I in Italy this past summer. My mommy actually took this photo, I love it! Yet another quickpage. So many ideas... so little time, what can I say?

BIGGER VERSION HERE:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/aug072.html

2008-05-22T14:55:00.000-07:00

Having one of those months... some days are so bad I feel like driving myself into a lake! AARGHHH. This is the first day this whole month that I do not have a sore throat and I have nausea if I spend too much time on the computer, but I am so behind on my stuff, how can I? Nicky has been home most of the month, no break from the little yellow bus for me. Thankfully hubby is there for me... he's the BEST.

This picture was taken in the summer of 1970-my sister and I with my grandparents (my mom's parents). Hard to believe they were both younger than my parents are now in this picture and both died just a few years later. I miss them, especially my grandma.
I followed a Winni scrapbooking tutorial for this one, BIGGER VERSION here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1970s/aug70.html

2008-05-19T20:41:00.000-07:00

Two more pages tonight. Not that I had time to do them, but I feel so crappy... I've had this sore throat now for a month. I am ready to go to the doctor!

This first page is my BEAUTIFUL Mom Laura. This was just before she got pregnant with me! Summer 1963. This is a quickpage by SnowsMoons Designs.
Bigger version here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1960s/summer63.html

This second page was a LOT of fun to make. First, I ran across to this 'Great Guy Spotted' frame by Cherswitz... so cute... and so true! Greg is the love of my life hands down. I knew it from the first time I saw him on a November day in 1984. I always felt he was MINE. My only regret is that it took so darn long for us to get together! We only got married in 2002, but, as far as I am concerned, it was meant to me. For us to survive divorces, kids and to find each other and be as strong as we are... it's nothing short of remarkable. Nothing will ever pull us apart. This fall will mark the 10 year anniversary of us re-starting our relationship after a 14 year hiatus.
I put this page together using a kit from Shabby Princess (Urban Kiwi Kit).

Bigger version here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/june022.html

2008-05-19T15:56:00.000-07:00

I am in the middle of doing these cute royal dollies, but I needed 2 minutes to relax, so here's the page I whipped out. Of course, a quickpage! Nicky and Connor, too darn cute in this pic, were 9 and nearly 2 here. Awww... brotherly love!

Bigger version here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/aug05.html

2008-05-15T16:55:00.000-07:00

Nicky's been home since his "accident". Sigh. He'll go back to school on Monday, he was in just too much pain. I am just about to go play Mario Kart for the WII with him as soon as I am done with this!
Isn't this picture amazing? I was 2 years old and I am in my grandfather's arms. He's my mom's dad. It's a RARE photo with him, I only have a handful. He died when I was 13 of liver failure. In this photo with us are my sister Lorena below us and to the side my cousins Esther, Elena and Ivo. I am probably closer to Elena right now, she's a sweetheart, she lives close to my parents so I always get news from her family. She just recently became a grandmother, imagine that! My cousin Esther's son Sabino lives and works in Australia, the handsome devil. I hear from Ivo's wife every now and again.

Bigger version of this picture here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1960s/fall1966.html

2008-05-14T15:42:00.000-07:00

Awww... my sweet boy! Connor here is almost 4 months old. Too cute!!! Cute Scrap kit courtesy of Lisa at http://ronimasil.blogspot.com/

BIGGER Version here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/dec2003.html

2008-05-13T17:09:00.000-07:00

I must admit... I feel pretty awful today. I was doing fine until the school called. Some girl, who obviously was not paying attention to where she was going, came around a corner skipping and tripped over Nicky's feet rest of his chair and fell right on TOP OF HIM!!!! The result... was skin off of Nicky's cheecks and a busted lip. Nicky is miserable. I made sure he was confortable and even though I was done on the computer for the day, I felt nostalgic and wanted to cheer up so I wanted to scan my senior pictures. Unfortunately the pictures I have are old and discolored or ruined. However, I found two in my Senior Year scrapbook that looked still quite decent, so even though they were wallet-sized, I scanned them at HIGH resolution, cleaned them up digitally from all the debris and speckles and made a page out of them. I will see if I can order some 8x10 of them too at Fotki.

So... that's the page I made using a QuickPage today. Pretty cute!
BIG Version is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1980s/fall1983.html

2008-05-12T17:45:00.000-07:00

Yes! One more new one for today. I haven't made many pages of the 90s (not a great decade for me by far) so I looked for some cute pics and found these. Nicky was 9 months old, adorable!!! I used a quickpage for this one... cheated again!

Bigger version is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1990s/aug97.html

2008-05-12T16:04:00.000-07:00

Sometimes I should never steer away from the computer. Just when I think my life is good, something happens that reminds me of the past and the 15 years I wasted rowing a sinking boat... but that's another story for another day. This new page is lesson 32 in my Winni Scrap lessons. It was meant to show how to use frames. Pretty cool. I learned a lot from these lessons. I am almost done and then I will learn how to actually MAKE digital scrapbooking elements. How cool. I can't wait.

Bigger version is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/lesson32.html
The kids at camp... so cute!!! Connor was 2!

2008-05-09T17:53:00.000-07:00

I don't feel quite as creative today... so, this page I made out of a ready-made quickpage. The pictures were really small that's why I opted for them to be smallish on the page as well. One of the pics it's actually a bit blurred even, but still, these two pics were taken the same day on December 11th 1972. Gosh... so long ago... and... what the heck was I wearing? MOM??? LOL. Oh yeah... it was the seventies, I forgot! LOL!!!
Bigger version is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1970s/dec72.html
It's been a strange day. I worked this AM and then my ex came to get Nicky and it's so strange not having to worry about Nicky for a couple of days. This is a new thing. Nicky's dad only moved to this area late last year and until a couple of months ago he would come and visit and stay with us. Tomorrow should be a fun filled day... we're all going to a Walkathon for Fybromyalgia Awareness and will try to raise EB Awareness at a booth. One of the other EB moms is in charge of the whole thing and a few other moms I know will be there as well, should be pretty fun. I just hope that my voice comes back full force and that my coughs goes away!
I am listening to Clay's new album... LOVE IT! Yey!

2008-05-08T17:34:00.000-07:00

Someday my Ship will come...

I saw this layout on the August 2007 issue of Digital Scrapbooking magazine, the one I took to Italy with us. On one of the advertisements there was the back of this little boy, maybe 2 years old, looking at the school bus and the layout simply stated 'someday *my* bus will come'. I thought it was cute and thought nothing of it until one of our days in Venice, when we were having dinner by the Rialto bridge and Connor just stood there for a while, looking at the boats go by and though of doing a page of him waiting for a ship the moment I snapped this pics! So... all this time later, there they are!

Bigger version of this page is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/aug07.html

The papers and elements I used to make this page are from Elisa's Bits

2008-05-06T14:47:00.000-07:00

I feel bad because my websites need updating BADLY, but this is so much more fun to do, and I feel so horrible today, I need something fun to do for me, LOL.

This photo I love. My dad and mom are holding me, and below is my older sister. This pic was taken in 1965, summer looks like, I was 1 and my older sister was 5.

Bigger version is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1960s/jul65.html

2008-05-06T10:54:00.000-07:00

Another day, and I am more sick than before. So sick that I had to stay home from work... that never happens.

I love how this page came out... yep, another page inspired by a layout in Digital Scrapbooking magazine! The elements come from Rambling Rose and the bigger version of this page can be found here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/june02.html

2008-05-05T15:50:00.000-07:00

I could not go workout today because I am sooo sick! My voice is shot. Nicky is also home and shortly I will go eat dinner and change his gauze, but first I had to do this page! Isn't it adorable? BIGGER version is here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/jan2006.html

I got the inspiration from the Digital Scrapbooking magazine. I finally can look at these layouts thinking... YES! I can do this!!!! I got the new issue yesterday and I bookmarked the pages that I want to do and this was the first one. I think mine came out even cuter than the example, but I am biased! I love having these inpirations, I could never come out with these ideas on my own...

I used scrapbooking elements from this gal over here. Very talented!!

2008-05-03T22:19:00.000-07:00

I could not go to sleep tonight before putting together another page. I probably won't be able to make another one for several days. The BIGGER VERSION of this one is uploaded here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/1960s/dec69.html

I used a quickpage for this one again, at 10:30pm, after the day I had, I thank God for the QP, I saved quite a few in the past several months, and I am happy I did.

This photo was taken in Christmas 1969. From the left is my dad, my nonna and nonno, my aunt Anna, myself and my sister. As you can tell on the table is the famous Panettone and my aunt had gotten me these cute sewing cardboard pictures, they were pretty cute. The strange thing is that I actually remember them, I remember her giving them to me and then I saw my mom in the other room thanking her for giving both myself and my sister some towels for our 'wardrobe'. It's tradition in Italy to start putting things away for when the kids get married, but at 5 years old, I remember being disappointed that instead of getting another toy I got towels for when I got married. I laughed at it the other day to my husband, look, I told him, I have 40 year old towels!!! LOL Too funny!

2008-05-03T15:26:00.000-07:00

The bigger image for this page can be seen here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/aug04.html

This is a very simple page I made out today with a sample kit from June Hill aka Tink © Andika Designs at http://andikadesigns.blogspot.com

Connor was almost 1 year old and he was SO DARN CUTE in these pictures, which were taken in late August 2004. The water was pretty cold but he was happy to be cooling off in a very hot day. I took about 20 pictures of so of him in his little pool but only these 3 came out half way decent! That's why I love digital pictures!!! I could have never caught the main darling shot with a regular camera, I would have given up by then!!!

2008-05-01T15:54:00.000-07:00

BIGGER version of this page can be seen here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/misc-years/angelfriends.html

I was doing this Winni scrap tutorial and I randomly picked the word art 'Friends are like Angels' and I was supposed to add a photo underneath. I was thinking of what photo to add when I got a phone call from a friend of mine and she was crying because her daughter, who has EB like my son, is not doing well, and she was so upset I started crying. When I got off the phone I started thinking of my friends that are not "like" Angels, but ARE Angels. I've moved a lot during my life and in consequence I've had very few people that I've truly considered 'best' friends. Two of those best friends died in 2004.

My friend Paola was someone I went to school with and worked with in Italy. We were best pals and wrote letters upon letters over the years. She went through infertility treatments and after many years she finally had her baby girl in late 2001. In late 2002 she was diagnosed with brain cancer and died on February 29th, 2004. Her family told me she was in a LOT of pain in the end. To say her death upset me... well, this does not describe exactly how I felt. While it's true that we had grown apart over the years, she always signified something important in my life. I am very sad to know her daughter, whom she wanted to much, will grow up without her mother.

My friend Darren on the other hand, I met at work in 1992. We worked together for about a year and he made a tremendous difference in my life. Even though he moved back east we kept in touch quite a bit. It was truly a big blow when he found out he was HIV positive. His partner did not make it through the summer, but he did live for a decade after his diagnose. I will forever miss him.

2008-04-30T15:53:00.000-07:00

BIGGER version of this page can be seen here:
http://public.fotki.com/ebworld/personal-photos/scrap-pages/2000s/apr08.html

I got Nicky's spring pictures from school yesterday, so I looked up my pre-made layouts so I could show everyone! Nicky looks SO CUTE in this pic my heart melts. This pic was taken a few days after his dental surgery when the dentist removed 7 baby teeth! He's my trooper and always will. Hard to believe he's 11.5 years old. Where does time go? Where's my baby?

As a quick update on his EB... so far so stable. He's been sick so he's had a lot more mucus to deal with than normal, so he's been pretty miserable. Nicky has allergies that get better or worse depending on the time of the year. We think it has to do with pollen or whatever. Anytime we go anywhere like Arizona they disappear. We can't test him because allergies test need to be done on the skin... so...

Nicky is now in 6th grade and doing okay. This has been a TOUGH year schoolwise for him, but he's developed a liking for the Lemony Snickets books, he's also read the books from the movies Chronicles of Narnia, Spiderwick Chronicles & Mr. Magorium Magic Emporium. He's looking forward to CAMP as usual, which we'll go to toward the end of June. Next year he'll officially be in Middle School, I am really worried because the other middle school was horrible, so we'll have to move him to another mid-high nearby, which might be okay because all his friends from his elementary school days go there so he'll already have friends!!!

Keep your fingers crossed for my angel!

.. until next time!
hugs, Silvia

2008-04-30T13:52:00.000-07:00

Here's another wonderful vintage page that I made with a quickpage (cheated once again, LOL-when I find out who made it, I will post the credits) it's a wonderfully old photo of my dad and his sisters. I am still a little fuzzy on the year, I asked my mom and she's supposed to email me back. My guess is that it was taken around 1943 or so. My dad looks about 12-13, and his sisters are 2 and 4 years younger than him, so I think it's about right. The big photo is the complete original photo, then I singled out the 3 siblings in the smaller ones, on the top my aunt Anna, below her my aunt Angela and on the bottom, of course, my daddy. My grandma for some reason always dressed my aunts the same even though they were 2 years apart.
The original photo is a bit ruined, I tried a bunch of restoring techniques with PSP, some worked wonderful with some of the other pictures, but the particular degree this photo is ruined made it impossible to use some of them so I did the best I could. This is still a lot better than the original, so I guess I should be happy with it, LOL.

MAY 3rd, 2008
UPDATE: I got word from my dad, he tells me the picture he 'thinks' was taken in 1943. He tells me he's not 100% positive, but that is what I thought, so I think it's probably correct! Here's the link for the final page!
http://public.fotki.com/ebworld/personal-photos/scrap-pages/vintage/1943.html

2008-04-25T16:08:00.000-07:00

Here's a cute one I did today of Nicky. These pictures were taken in 2002 and for some reason they were lost in a disc for a few years, I only found them when we moved in the new house and I got a new computer. At the time we had a digital camera (that Connor destroyed by taking it and putting it in a sink full of water-aargh... but that's a whole other story) that took mini-discs.

At any rate... Nicky is usually pretty afraid of animals in general, but he really liked this particular kitty that his stepsister got for a birthday gift. Of course he only liked the kitty while he was young, once he grew that was that and he would scream anytime it got a couple of feet away!!! LOL. Ahhh... my little Nicky looks so darn cute in these photos!!! I actually cheated once again and used a pre-made quick page made by Rita.

2008-04-24T15:43:00.000-07:00

This is my scrap lesson 30 of the Winni Scrapbooking lessons. This is probably one of my favorite vacations of my life. My mom's cousin Silvana unfortunately died of Cancer in 1974 and they were super-close, she was even my younger sister's Godmother. The following summer her husband and the children (my second cousins) who were alone and quite upset (as one can imagine) decided to vacation together with us in the Veneto region (in Italy, of course). At the time my grandparents owned two homes in a little village called Lusiana where they were born, married, and where my dad and his two sisters were born, so there was enough room and a spot for us to stay and visit the beautiful nearby spots such as Lake Garda, Venice etcetera.

I will never forget that summer. I loved both Pinuccia, who is a couple of years younger than me and her brother Gianni, a couple of years older than me. We basically grew up together. I am still close to them til this day and always make sure I visit them when I go to Italy.

2008-04-24T10:51:00.000-07:00

Here's another page that I've done recently. I've always loved this picture! I am fairly sure it was taken in Italy in 1967, in the back of my uncle's truck or van or... whatever that was! I was 3 years old in the 'hat' in the forefront, ain't I cute? The other girl with the hat is my sister Lorena, she was 7. The other kids are our 'american' cousins (as we called them) all close in age to us. From left to right, Lisa (6), me, John (5), my sister and my oldest cousin Mary (8).

I cheated and used a QuickPage for this layout. Ha Ha. I am fairly sure the quickpage is from the fabulous Sindiego's Scraps.

I am still feeling BLAH, worse than ever, I don't know what is wrong with me, I feel very strange. I hope I am not sick! But how sick is it that Carly got voted off American Idol? I cried. BOO!!

2008-04-22T15:31:00.001-07:00

Here's one I did for my little one. It was a Winni Scrap tutorial #29... notice the footsie coming out of the frame...

This tutorial was not very easy to do, I should have picked something more squarish or an easier shape, the foot was problematic, but I do love how it came out!

Here Connor was 7 months old and in his Easter outfit, I LOVE IT! At 7 months, Connor barely knew how to sit up well so I ended up taking almost 100 photos that day trying to get a good shot! This is one of the handful that came out good that day.

I am still feeling BLAH today emotionally, I just hope I don't get sick. My husband was so sick he had to go to the Doctor and that happens very rarely, so I hope the kids and I don't get sick as well.

Looking forward to American Idol tonight and Big Brother... ya know me, the Reality TV Queen!!

2008-04-22T07:54:00.000-07:00

I haven't posted in a LONG time on this BLOG, but I wanted to re-start it because of my scrapbooking. My PERSONAL Blog is at Myspace... I like it there because it's private and only my friends can read it. THIS blog on the other hand is my scrapbooking blog. I hope you enjoy my attempts in learning digital scrapbooking!

I will post my new pages here and if I actually MAKE kits of some sort, QP or anything like that, I will post them here as well.

Enjoy!

Silvia

2007-03-14T09:57:00.001-07:00

My blog is now at MySpace:
http://www.myspace.com/ebmom

2004-06-14T07:03:00.000-07:00

I feel the weight of the world this morning, so I am forcing myself to write this entry to think of more 'lighter' things. All my favorite reality shows are over for the time being, so as good therapy for myself, as very boring thing for anyone reading this, I will post my comments here below!

THE APPRENTICE
I really liked Bill and I am glad he won, but I am not sure he really 'deserved' to win. I feel like he stayed under the radar for the whole show, not doing anything particularly bad, nor anything particularly brilliant either. I really liked Amy and Nick, even Troy to me was a better choice to win the show (even though he had no degree, to me that was a non-issue), all these three showed a go attitude and were willing to do anything to get ahead. They had brilliant ideas and many times it was their ideas that won challenges for them. Oh well. What about OMAROSA you might ask? Let's not ask! LOL. I think she is one lying b**** that decided to play the race card as so many black people do when they are out of ideas on how to defend themselves for their behavior... they just have to blame others. I find this behavior awful. Even Oprah looked dismayed!!! That says it all. She did not deserve her 15 minutes of fame, and sadly, some soap opera hired her so we will get to see her more. HAPPY HAPPY JOY JOY! OMAROSA GO AWAY!!!

THE BACHELOR
I thought Jesse was very cute, although not really my type, but I also found him to be more blind and gullible than most. He asked his best friend to 'spy' but then when she tells him how awful Trish Trash was, he keeps her around anyway? I didn't get that. Trish is yet another Omarosa... lies lies lies!! She, like her Apprentice counterpart did everything she could to make the other girls look bad, and in the end, she looked even worse! My guess is she won't get a soap opera gig and thank goodness for that! As usual I did not agree with the final pick... it's really bizarre. With the first bachelor (Alex) I thought Trista was a much better choice than the girl he picked (oops... forgot her name) and, what a surprise, it didn't last. Then with Aaron (what a cutie!) I also thought that he should have picked the blonde instead of the brunette... the brunette (sorry, I can't remember their names) was a bit too stuck up in my view, too full of herself... their relationship did not last, what a surprise. Andrew was the only bachelor that picked the 'right' girl in my view. While their relationship hit the skids anyway, it did last longer than most and they are still very good friends as I hear. What to say about Bob? I thought he also picked the wrong girl in the end, and their relationship didn't really last either. I was not surprised.
I wish Jesse well, but I think Tara showed to be more in love with him than the other blonde he chose and felt she was a better match for him. But, what do I know?

SURVIVOR
I didn't see every minute of this show as I did the others, but I saw enough to root for RUPERT and to wonder how Boston Rob was not getting booted off. He was playing dirty games and false alliances with everyone and he played everyone for fools, and in the end he wins the girl who won the million? I don't get it. He only won because the others believed him, and he played everyone for fools. I guess if the others didn't win they deserved not to win because they were gullible enough! Not sure what else to say... I will not watch the wedding if it's televised, Boston Ron disgusted me and I doubt my opinion will change anytime soon. While I understand that this is a 'game', I also know that there is something to be said about decency and honor, which he had neither. BLAH.

AMERICAN IDOL
This is by far my favorite 'reality' show. I love Kelly Clarkson and adore Clay Aiken. I have both their albums. I even have Justin Guarini's album (apparently I am one of the few?) and I actually thought it was really, really good!! I don't understand why it didn't sell.. then again, I love and even own the DVD of the movie From Justin to Kelly while many people didn't care for it (and the critics killed) but, hey, I guess that's just me.
This season was not as good as the last in my view, probably because I felt that there wasn't enough diversification. This season there were no strong male vocalists and the top 3 contenders (in my view-Fantasia, Jennifer and LaToya) were basically similar in their talent and ultimate place in the music world. Last season the top 4 were very different from each other, Josh Gracin was 'country' (and I will be buying his album when it comes out tomorrow) Kimberly Locke was pop/soul, Clay pure pop and Ruben pure soul. Having said that, I am happy that Fantasia won, and even though I felt that Jennifer and LaToya could have won as well and got booted off the show way too early, at the same time I do believe that Fantasia was the most talented of them all. She did give me chills afterall!

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