July 10, 2019

6 Months to Normal

I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles. I can’t believe it took 6...

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May 1, 2019

What I’m Into {April 2019 Edition}

What I am watching Three years ago, as season 6 was about to start, I got tired of hearing about Game Of Thrones everywhere, so I decided to binge on seasons 1-5. I first started watching 1 per day, then eventually were 2, 3, by the time I finished binging...

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April 26, 2019

One Day without EB

This year, so far, has been horrible. I try to do fun things and distract myself as much as I can, but the undeniable truth is there, always there. Nicky is in pain. Always. At this point we’re waiting for a sleuth of appointments with various specialists (GI, Dermatologist, hydrotherapy...

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April 11, 2019

Nicky’s Life Part 71

July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat,...

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April 4, 2019

Out Of The Box, Into Our Own Unique Box

Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him. He spends his...

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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...

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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...

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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...

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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,...

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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...

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