It's been a while...

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

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

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

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

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

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

Thank You and God Bless!!

Nicky's journal...

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

Yes, it's THAT bad. Period.

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

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

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

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

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

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

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

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

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

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

Peace,
Silvia

NEED good news please... anyone?

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

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

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

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

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

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

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

{{HUGS}}

The worse thing you could do...

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

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

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

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

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

Mini-Greg & Nicky Update 7/8/2010

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

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

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

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

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

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

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

WordArt Freebie

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

CLICK HERE to Download...

Here's how I used it!

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

{{HUGS}}

WordArt Freebie

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

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

CLICK HERE to Download...

Here's how I used it!

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

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

{{HUGS}}

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