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

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...

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

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...

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

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...

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...

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

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

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...

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

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

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

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

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

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...

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

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...

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.

{{HUGS}}

Can't help but wonder...

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...