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~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis

.....A Mommy's mission to raise Ichthyosis awareness...

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~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis | ouryoungwarriorevan.blogspot.com Reviews
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.....A Mommy&#39;s mission to raise Ichthyosis awareness...
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2 evan's story
3 fundraising for first
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6 skin tips
7 laundry tips
8 school suggestions
9 our microsilk tub
10 catching up
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~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis | ouryoungwarriorevan.blogspot.com Reviews

https://ouryoungwarriorevan.blogspot.com

.....A Mommy&#39;s mission to raise Ichthyosis awareness...

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ouryoungwarriorevan.blogspot.com ouryoungwarriorevan.blogspot.com
1

~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis: Skin Tips

http://ouryoungwarriorevan.blogspot.com/p/skin-tips.html

About Harlequin Ichthyosis (HI). About the FIRST Foundation. Cute Stuff : -). Originally posted on May 5th 2013- IAM: Ichthyosis Mommy Tips). Although I say "skin tips" this section is more of what I do for skin care. All of these "tips" are what works for us which may not be the case for everyone. This page is written in my opinion. Be sure to CHECK WITH YOUR DOCTOR before trying something new or something you are unsure of! Baking Soda in the bath. This is something that is absolutely NOT. This is a mu...

2

~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis: Evan's Story

http://ouryoungwarriorevan.blogspot.com/p/evans-story.html

About Harlequin Ichthyosis (HI). About the FIRST Foundation. Cute Stuff : -). Evan- Finally home- 2 months old. Evan- 20 months old. He is my hero. Evan- 3 years old. Evan is now 5 years old. As a preemie he faced many challenges in addition to his skin condition. He is very behind developmentally. Evan is finally sitting on his own and is now army crawling all over the place. And we are very optimistic for his future. Evan- 4 years old. Ichthyosis Awareness Month 2014 Picture. Subscribe to: Posts (Atom).

3

~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis: Ichthyosis Awareness Month 2015: Evan's Skin

http://ouryoungwarriorevan.blogspot.com/2015/05/ichthyosis-awareness-month-2015-evans.html

About Harlequin Ichthyosis (HI). About the FIRST Foundation. Cute Stuff : -). Friday, May 15, 2015. Ichthyosis Awareness Month 2015: Evan's Skin. Evan's skin cells are not functioning properly. The mutation in his ABCA12 gene disrupts the transportation of lipids to the epidermis. Over the years, medical treatments have vastly improved for those with ichthyosis, especially Harlequin. Prior to 1984 no one, affected with HI, survived birth. Stepping closer to a cure is possible! These days is the same ol',...

4

~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis: Spring Break Fun

http://ouryoungwarriorevan.blogspot.com/2015/04/spring-break-fun.html

About Harlequin Ichthyosis (HI). About the FIRST Foundation. Cute Stuff : -). Wednesday, April 29, 2015. We have been busy, busy, busy! I feel like I am repeating myself! It's hard to blog these days while caring for these two active boys! We had lots to do during Evan's spring break and I tried to make it an enjoyable week, filled with lots of activities and events! That smile says it all! And of course Evan wanted his brother to come along! He wanted to play dinosaurs outside. Sure why not? Ichthyosis ...

5

~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis: Ichthyosis Awareness Month 2015

http://ouryoungwarriorevan.blogspot.com/2015/05/ichthyosis-awareness-month-2015.html

About Harlequin Ichthyosis (HI). About the FIRST Foundation. Cute Stuff : -). Sunday, May 3, 2015. Ichthyosis Awareness Month 2015. It's Ichthyosis Awawreness Month! A month we recognize this life long disorder and come together to spread awareness. For the past few years I have hosted fundraisers for the FIRST Foundation. I contributed to " It Makes Cents to Help FIRST. And hosted two T-Shirt sales, Evan's FIRST Fundraiser. To "Raise Awareness, Funds and Hope for FIRST". On it, as a thank you! Some form...

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My little box of chocolates: To the man who just can't keep his comments to himself...

http://corasboxofchocolates.blogspot.com/2015/08/to-man-who-just-cant-keep-his-comments.html

My little box of chocolates. Tuesday, August 11, 2015. To the man who just can't keep his comments to himself. Cutest Bumble Bee I've ever seen! Recently, Ashlynne had her very first dance recital. I was on my way back from Texas from Mary Kay Seminar and burned back into town just in time to make it to the recital. It was a nature themed recital and her class was dressed as bumble bees. She rocked it out, and was awesome! Enter stage right: The one man who has to make an ignorant comment. Ashlynne does ...

fishyskin.blogspot.com fishyskin.blogspot.com

Fishy Skin: Living with Ichthyosis Vulgaris: Ichthyosis Confessions: Is It True?

http://fishyskin.blogspot.com/2012/03/ichthyosis-confessions-is-it-true.html

Fishy Skin: Living with Ichthyosis Vulgaris. Friday, March 2, 2012. Ichthyosis Confessions: Is It True? This is part of a series of blog posts I dubbed "Ichthyosis confessions" which features people on youtube talking about their experiences and concerns about Ichthyosis. A Singaporean teen video blogs about Ichthyosis, looking for possible treatments to ease the condition. Subscribe to: Post Comments (Atom). Yes, I have Ichthyosis Vulgaris. Would you like some tea? Call me your Ichthyosister! Dr Keith C...

jradandjess.blogspot.com jradandjess.blogspot.com

The Barney's: September 2013

http://jradandjess.blogspot.com/2013_09_01_archive.html

Sunday, September 29, 2013. I have a love-hate relationship with aquaphor. I love that it makes Wyatt all hydration-y. I hate that it coats all of his clothes. It really does work wonders for Wyatts skin. But it's impossible to get out of clothes. Wyatt is a much happier boy with a fresh coat of aquaphor. It's destroying my washing machine. So to get to the point. aquaphor is destroying my washing machine. No thank you, I DON'T want to spend $350! EBay it is. Oh eBay, you have yet to let me down! Jared t...

jradandjess.blogspot.com jradandjess.blogspot.com

The Barney's: What is EHK

http://jradandjess.blogspot.com/p/what-is-ehk.html

According to the Foundation for Ichthyosis and Related Skin Types {F.I.R.S.T.}. Epidermolytic ichthyosis (EI) (formerly epidermolytic hyperkeratosis (EHK) is considered one of the five main types of ichthyosis (the others being lamellar ichthyosis, congenital ichthyosiform erythroderma, ichthyosis vulgaris, and X-linked ichthyosis). EI is rare, occurring in approximately 1 in 300,000 Americans. Although no currently available treatments are ideal, a combination of these strategies may help:. Wyatt curren...

fishyskin.blogspot.com fishyskin.blogspot.com

Fishy Skin: Living with Ichthyosis Vulgaris: November 2011

http://fishyskin.blogspot.com/2011_11_01_archive.html

Fishy Skin: Living with Ichthyosis Vulgaris. Saturday, November 19, 2011. A Video that Explains it All. I think of all the Ichthyosis skin conditions, I am afflicted with the mildest form, I consider myself still fortunate despite how aggravating the "mildest" form is. I cannot begin to fathom the severity and difficulty of living with Ichthyosis of the extreme or rare kind. If you can't see the video, watch it here. Subscribe to: Posts (Atom). Yes, I have Ichthyosis Vulgaris. Would you like some tea?

corasboxofchocolates.blogspot.com corasboxofchocolates.blogspot.com

My little box of chocolates: April 2015

http://corasboxofchocolates.blogspot.com/2015_04_01_archive.html

My little box of chocolates. Tuesday, April 28, 2015. What every hairdresser wishes you knew. Branching off of that, learning how to use a round brush can change your life! It can reduce the amount of time that you are curling and flat ironing. It can be tricky, but as long as you keep pulling the brush from the scalp out to the ends, you won't get it caught in your hair. NEVER spin without moving the brush outward. Larger barrel brushes produce volume, smaller barrel brushes produce more curl. These are...

corasboxofchocolates.blogspot.com corasboxofchocolates.blogspot.com

My little box of chocolates: Welcome to Holland- a must read for EVERY parent

http://corasboxofchocolates.blogspot.com/2014/12/welcome-to-holland-must-read-for-every.html

My little box of chocolates. Tuesday, December 16, 2014. Welcome to Holland- a must read for EVERY parent. By Emily Perl Kingsley, and it reminded me of how we, moms of special needs children, do it. I mentioned to her this essay, and she said she carries it with her every day, and told me that there is now a 2nd part. You say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.". 2 of my travel guides through my own, personal, Holland.

jradandjess.blogspot.com jradandjess.blogspot.com

The Barney's: January 2014

http://jradandjess.blogspot.com/2014_01_01_archive.html

Tuesday, January 14, 2014. Meeting with Dr. Wilcox. I often joke about my infertility by saying that. I'm broken" accompanied by a shoulder shrug and a smile, or I say things like,. I don't EVER have to take birth control again, woop woop! No unplanned pregnancies for me! Not gonna lie. I almost cried right there. No part of me wants to go through all of this again. But you do what you gotta do for your kids right? I guess it's time to just grin and bare it again. Tuesday, January 14, 2014. No success ca...

corasboxofchocolates.blogspot.com corasboxofchocolates.blogspot.com

My little box of chocolates: Mom's Wild Ride

http://corasboxofchocolates.blogspot.com/2015/03/moms-wild-ride.html

My little box of chocolates. Tuesday, March 3, 2015. God sometimes has a very funny way of reminding us just how human we all are. Saying a prayer of Thanks that God wasn't quite ready to. It's just a car mom, and it did it's job, it kept you safe. March 4, 2015 at 8:22 AM. You are ALL in our prayers Cora. Give you dad a hug from me please! July 7, 2015 at 1:27 AM. This blog has pleasant quality stuff that can impress to anyone, nobody can defeat this. Kids Ride Wild. June 26, 2016 at 7:32 AM. Well, comi...

fishyskin.blogspot.com fishyskin.blogspot.com

Fishy Skin: Living with Ichthyosis Vulgaris: A Child with Granny Hands: A Case of Hyperlinear Palms

http://fishyskin.blogspot.com/2011/07/child-with-granny-hands-case-of.html

Fishy Skin: Living with Ichthyosis Vulgaris. Friday, July 29, 2011. A Child with Granny Hands: A Case of Hyperlinear Palms. I've been called many things and many names growing up. People would discuss my fishy skin right in front me as if I wasn't there. They would prod and stare at it and theorize how this came about. But thinking about all that name calling, amuses me now. It seemed to mystify people that someone like me can actually live with something like this. The act of strange food cravings by a ...

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Our Young Warrior ~ Evan Matthew

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~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis

About Harlequin Ichthyosis (HI). About the FIRST Foundation. Cute Stuff : -). Thursday, August 18, 2016. Wow it's been a while! I know I say that each time but blogging these days is tough for me to accomplish! These boys keep me on my toes for sure! And when I have a free moment I tend to put my feet up and close my eyes! A LOT has happened since I last wrote. First and foremost, Evan is now a SIX YEAR OLD! I can't believe it! Check out this video. My little man walking up to accept the honor! Between t...

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