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Greg Update December 28th 2009

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

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

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

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

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

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

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

Hugs and Kisses!!!

Silvia & Co.

Epidermolysis Bullosa Awareness Incredimail Letter

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

DOWNLOAD

More EB Awareness Incredimail letters are available at this link:

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

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

{{{HUGS}}}

Where to get info about Marybeth & Samantha

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

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

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

Free Bon Jovi Wallpaper

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



DOWNLOAD HERE

{{{HUGS}}}

Silvia

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

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

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

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

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

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

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

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

{{{HUGS}}}
Silvia and the Gang

Free Animated Dolly Letter

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



DOWNLOAD HERE

{{{HUGS}}}
Silvia