Silvia

June 24, 2020

Nicky Updates, June 2020

It’s been a while since I updated everyone on Nicky’s health. So, here I go. Because of the COVID-19 all kinds of appointments were cancelled, but Nicky does have an iron/blood infusion in early July and an esophageal dilatation on August 24th, so he does have some stuff happening soon....

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May 23, 2020

Butterfly Talk Episode 2 – Coping Techniques

New episode of Butterfly Talk ready to view! In this episode I talk about coping strategies for Special Need Families and also for those stuck at home due to COVID-19.Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing...

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May 15, 2020

What I’m Into {Spring 2020 Edition}

What I am watching I must admit… I am not watching many “new” shows (to me) lately. I’ve been mostly watching “new” seasons of shows I love, such as Outlander, Call the Midwife, Star Trek Discovery & When Calls the Heart. However, there is always something new that is amazing...

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May 6, 2020

Butterfly Talk Episode 1 – The Bravery of patients with Epidermolysis Bullosa

Butterfly Talk is back! I used to have the “Butterfly Talk” podcast a while back, where I mostly interviewed people form the EB community (https://www.blogtalkradio.com/butterflytalk)…This new version is a YouTube show where I will talk mom to mom about different aspects of coping and celebrating our amazing kids. It will...

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May 1, 2020

Being Stuck at Home… is not “Fun”.

It is my sincerest hope that now that people are experiencing what I’ve experienced for a couple of decades being “stuck at home” with my son, they will no longer say or imply insensitive things to me such as “you’re so lucky”, or believe is a “luxury” or “must be...

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April 24, 2020

Yes, RDEB Gets Worse With Age.

RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does. I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all...

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April 23, 2020

Nicky’s Life Part 75

March 2017 – This is still one of my favorite pictures ever! Kaley Cuoco on the set of Big Bang Theory hugging my Nicky. She’s a champion for EB Awareness and is amazing!  More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 1,694

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April 16, 2020

It’s Been a While…

Haven’t written in a while. 3 months to be exact. This new year started and it knocked me out cold. At first it was Nicky’s wounds. They were BAD. The word “bad” doesn’t even give it justice, they were ATROCIOUS! So, I spent a great deal of time researching, googling,...

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January 17, 2020

Healing Those Wounds….

Healing Nicky’s Wounds that he gets from his diagnosis has always been my top priority. Preventing them to begin with was always #2. I must admit that when Nicky was little, it was “fairly” easy to keep his wounds healed and his skin intact compared to now. I even have...

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January 10, 2020

What I’m Into {Winter 2019/2020 Edition}

What I am watching When they announced “The Handmaid’s Tale” on Hulu a few years ago, I wasn’t going to watch it. I had watched the movie long ago and it pretty much disgusted and troubled me, so I said “No way”. However, with the critical acclaim and the suggestions...

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December 29, 2019

I Know Nothing about EB but…

The other day, for the umptheenth time, someone sent me a message telling me that… even though they knew nothing about EB, their “eczema” was healed through foods and supplements etc. I don’t even bother to respond anymore, I just delete it. To compare eczema to EB is preposterous. I...

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