Thursday, December 31, 2009
Posted by Silvia at 6:53 PM
Tuesday, December 29, 2009
it's the first video on the top left corner w/ words 'imagine'
Thank you so much!!!
Posted by Silvia at 3:46 PM
Monday, December 28, 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.
Posted by Silvia at 7:29 PM
Saturday, December 12, 2009
Here's a letter I made a while ago and never uploaded to the site... it's FREE and you can download it here...
More EB Awareness Incredimail letters are available at this link:
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!!
Posted by Silvia at 11:51 AM
Sunday, December 06, 2009
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
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.
Posted by Silvia at 11:50 AM