Silvia

August 14, 2019

What I’m Into {Summer 2019 Edition}

What I am watching The fact that I was going to watch The Spanish Princess on STARZ was a given! This is basically the “sequel” to “The White Queen” (about the life of Elizabeth Woodwille, wife of Edward IV) and “The White Princess” (about the life of Elizabeth of York,...

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July 24, 2019

Nicky Update: July 2019

I will try to update this blog on Nicky every now and again, and I felt it was important to start now because, even though he’s finally improving greatly from his 6 months ordeal, there are things that have deteriorated from him spending a significant amount of time not being...

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July 23, 2019

Nicky’s Life Part 72

October 1999 – Nicky’s first official visit to the Pumpkin Patch! He was almost 3 years old. More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/

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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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