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

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

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!!

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!

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!!!

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.

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

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

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.

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.

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!!

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!!

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

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

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!

Manipulating a disability post into something political?



Yes, that is what happened this past couple of days and it has gotten me furious.
I received an email the other day about Bush taking away Closed Captioning for the deaf and to sign a petition. My ex-father in law, a dear sweet man I will never forget who died a few years ago, was deaf following a bomb exploding near him in Vietnam. To say that he relied to closed captioning is an understatement. There wasn't much he could do so he watched a lot of television. My son also uses closed captioning 24/7 to learn how to spell, so... I signed the petition, no brainer. I then forwarded the message to everyone I know including other lists so they would be aware of this travesty and sign the petition too.

What happened after that is baffling. For one, a relative that never replies to me (not even to say how cute Nicky or Connor are in the pictures I send him) immediately went on the Bush defense and stated that not only he thought it was a hoax, but that this had nothing to do with Bush but congress. Hmmm? Doesn't Bush sign or vetoes this sort of things? Whatever.

For two... I have a few mailing lists that I moderate, and there are three taboo subjects, politics, religion and abortion. I did that to basically 'keep the peace' on lists that have nothing to do with politics, religion or abortion per se.
When I forwarded this post to sign the petition to keep closed captioning, everyone on miscellaneaous lists thanked me for letting them know about it and either signed or basically I assume, ignored the email. But not on my high school reunion list. No sirreee.... While one classmate thanked me and signed it, a group of others, one after the other, blasted me for stating that I do not allow political talk, yet I post about a political issue. "This is not a political issue, it's an issue, I stated, nothing to do with your party affiliation"... but, no, I got blasted somemore. To say I was livid is the understatement of the year.
These people showed a heart of stone, and I told them that I duly noted the fact that they don't care about the disabled community and then I further stated that if they want to talk politics on the list SO BAD that they blast me and manipulate a post in being political, then to, by all means, go ahead and start talking politics all they want, to go right ahead.

Sickening... sickening... sickening... ugh!!!
Silvia

What an awful day this is. Let's mark April 20th, 2004 as a day to forget.



This morning I sadly found out that a little girl, all of 8 years old with RDEB like my son, passed away this past Friday after they stopped her blood transfusions because they were just too painful and they weren't stabilizing her. She died 2 days later. This of course hits me like a ton of bricks because my son has the same form of EB, he is 7 years old, and while his anemia problems are so far under control (barely...), it's scary to think that Nicky might have the same fate... I just can't think about it... let's just say I wish to ignore what could be a devastating future and live day to day.... ugh...

Then this afternoon I got an email from my mom to sadly tell me that my best friend in Italy died of a brain tumor. She had only found out she had the tumor a few months ago and we knew it was lethal... still, this is a big blow to me, I can't stop crying. She was only 38 years old and had a little girl that was only 2.5 years old. She had gone through 7 years of infertility to have her baby girl only to die when the baby is soo young... life just isn't fair.
What makes matters worse is the fact that she died on February 29th, which means that if this year wouldn't have been a leap year, she would have died on the same day Alex did. I don't know how to feel about it... warm that Alex was there to greet her? Creepy? I don't really know.
While we were best friends as teenagers and wrote to each other countless letters after I moved to the U.S., before I found out about her cancer, in early 2002, I was upset with her for her lack of compassion toward my loss of Alex and how sick Nicky was. He never wanted to talk about either. For Xmas 2001, when it went to Italy to visit my family, she came to see us and never once did she acknowledge Nicky, all she wanted to talk about was herself. This was annoying at the time, but what got me really upset one day was the fact that she was very snotty in an email she wrote me, telling me how come I never told her that I was getting married... what? Greg is all I talked about to everyone for the past several years, the wedding date had been set for months and we had planned a wedding for years, so for her to say 'why didn't you tell me' told me that she was so wrapped up in her own life to really pay attention to what was going on in anyone elses. It also bothered me that she never once replied to my emails, she always wrote new ones, never answering questions or anything, she only talked about herself.

This was not the Paola I knew, and if I would have known then what I know now, I would have realized that years and years of infertility had truly scarred her, plus she was possibly feeling the unknown sympoms of the brain tumors.

I wrote her a long, very long letter (not an email) when I found out about the tumor, telling her I cared about her, to please write me, but she never did reply.

I wish I would have known, in that winter day 2001, that I would never see her again... sigh...

Would you believe?

Yes, I am the latest victim of Identity Theft. Hard for me to believe that I was singled out by seemingly a complete "local" stranger for them to impersonate me and open at least 2 cellular phone accounts. Who knows what else? For now the two cellular accounts have been suspended and are being investigated. I am not responsible for the charges. But there is yet another inquiry to my credit report that I won't know more details about until next week, and I hope it's not going to be something "bad". Ugh.. like I need something else on my plate to deal with... never a dull moment, I swear.

On a positive note, Nicky got his power chair today.. yey! It looks awesome and he loves it. He did not want to get off it, ha ha. I am sure it will get a LOT of use!!

Silvia

I just don't get it.

There are so many people out there who simply want to downplay my son's condition that is rather sickening.

First is my son's pediatrician. She always thinks my son can just be cared for 'anywhere' by 'anybody', even tricky and downright dangerous surgeries. Yes, why make sure Nicky gets approved to see the EB experts at Stanford where he can be treated with respect and care by a staff that knows everything about EB when there are so many people down at LA's Children's Hospital that can operate on him that have never touched, let alone seen an EB child? RIGHT!!! Thank you so much Nicky's pediatrician for never having the best interest of my child at heart. You have no idea how much I appreciate it... NOT@!!

Then there are those that feel that I am 'overwrapping' my child. Oh really? This is based on what? Is it possibly based on the fact that your child is less severe and can handle not being wrapped? Maybe your child is severe too, but you just like to see your child completely covered in scars? Who are you to tell me what to do? My Nicky could not handle being unwrapped. The Debra Nurse told me I am doing a great job, and supports wrapping. If I was to keep Nicky unwrapped, I would not be surprised if Child Protective Services would come to my door after I sent Nicky to school to take Nicky away from me. Yes, that is because that would be child abuse, plain and simple.

CAN I SCREAM??? AAAGGGHHHHHHHH!!!!!!!
Silvia

I am so mad right now I could spit nails.

Nicky's g-tube fell out on Saturday morning and I took him to the ER. Because of my son's fragile skin, the ER was not able to transfer Nicky to any hospital because every hospital they called either did not have a Pediatric GI on staff, or refused to take Nicky due to his skin condition. The tube was put in originally at Stanford, where the EB clinic is located.
I think the most devastating thought to me at the moment is that the insurance/medical group is just totally denying Stanford for Nicky, and yesterday morning I was so upset I was ready to scream. I took the ER's sheet to Nicky's pediatrician with all the 'refusals' and basically told her that they had no choice but approve Stanford, but, NOOOO. She told me that there was no way they were going to approve Stanford and the only way I could EVER go there is if I *MOVED* in the Stanford's area. AARRGH!! Oh Really? I told her. How come when I lived in Arizona they approved Stanford? How come when I lived in California City they approved Stanford?
She had no come back so she told me that if this would have happened to her child she would not have taken him to the local hospital's ERs but she would have taken him to the Los Angeles Children's Hospital's ER ~and~ if I would have called her office, the DR on call certainly would have told me to drive the hour and a half down there instead of the local hospital. OH REALLY? Well lady, I DID call your office, and the Dr on call DID NOT tell me to drive down there. She had no come back for that one either, but I was so mad that she was treating me with absolutely NO respect and treating Nicky like any other child that I vowed to either prove her wrong and make her look like a total idiot, or drop her and change pediatrician. After all, she is not acting in the best interest of my son. Period.

SO.... yesterday I spent the next 8 hours in YET another Emergency Room (not counting the driving time), this time at the Los Angeles Children's Hospital. The pediatric Dr that took care of Nicky had taken care of 3 other RDEB children before so I felt more at ease. Because Nicky still had a very, very tiny hole, they were able to squeeze in a very small tube. Their plan was to slowly increase the size to the normal 14 french. Instead, after their best efforts, the biggest they could manage to put in was an 8. An 8 is still pretty small, but big enough to do the night feedings. This tube, although working good, is only a temporary solution until they can put a regular mic-key back in. However, not only her, but two other Pediatric ER Doctors and two RNs were just baffled that the insurance/medical group is denying Stanford for Nicky. So.. they wrote a script for Dr Castillo to finish up the job and do a dilatation to put back in a 14 french. They did not feel there was any Pediatric GI at that hospital that could properly care for Nicky, and, even so, the only one that would 'possibly' be able to do the job has no openings until JULY!!! Will the Pediatrician put the referral for Stanford to do it? Probably not, and that's where I can call the medical group, the insurance and whoever I can to let them know how she is not properly caring for my child and by denying Stanford continuously she is also endangering my son's life. I am telling you now, I am so upset with her!! Nicky's dad told me (jokingly) that he will go see her with a gun. I will no longer take her BS. That's it! I've had it!!!

Like EB is not hard enough to live with, the only thing I ask if for my son to be able to go see the specialist, why do I feel like I am asking for the moon? AARRGHHH