March 26, 2019
March 2019
March 21, 2019
What Having a Rare Condition Means…
What does having a “rare” member of the family means for our whole family? Rare means being scared. Nicky is 22 years old and I still check if he’s still breathing each and every morning. That magnitude of worry is overwhelming at times. I live his condition even though I...
March 14, 2019
What I’m Into {February/March 2019 Edition}
What I am watching Let’s face it. There aren’t many historical shows that take place in my beloved Italy, so when I heard about the “MEDICI” on Netflix, I was all over it. Season 1 had the further intrigue of starring Dustin Hoffman and Richard Madden. Season 2 jumps a...
March 12, 2019
Nicky’s G-Tube Ordeal
Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping. After trips to his Doctor and the ER, tube...
March 5, 2019
Nicky’s Life Part 70
June 2000 – Nicky was just a little over 3 years old in this picture hugging Barney. He loved Barney and Teletubbies, Sesame Street and Blue’s Clues, he would watch them all day long, over and over again. At the time he could walk OK, albeit very carefully and slowly,...
March 1, 2019
I Will Always Fight For The Health of My Son.
Nicky’s dad sent me a text from the hospital where Nicky is recovered last night and told me that the case worker came in to tell him that the insurances are covering everything 100%. I almost fell flat on my face. These past couple of months have been truly hard...