April 28, 2020
Butterfly Child Book Quotes
Here is part 1 of quotes from my book “Butterfly Child: A Mother’s Journey“. Love & Light,
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...
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/
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,...
April 15, 2020
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...
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...
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...
December 29, 2019
Nicky’s Life Part 74
Halloween 2002! Nicky loved Barney! Here he was almost 6 years old More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/
December 12, 2019
Life with EB
I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be...
December 1, 2019
November 22, 2019
Nicky Makes The News :-)
Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo – who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian...
November 13, 2019
What I’m Into {Fall 2019 Edition}
What I am watching I’ve always wanted to watch “Le Miserables”, but that whole musical adaptation thing… I just could not watch it. I tried, trust me, but I could not do it. I guess because I grew up with musicals being ‘happy and fun’ stories, a musical of a...
November 7, 2019
Epidermolysis Bullosa is Hard
I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go...