Tag Archive | linear eepidermal nevus

MollyMadison making smiles!

We have so many talented people in our lives; from top chefs and bakers, to woodworkers and tanners. One special friend is a master at crocheting, you know… that thing with yarn.

Crocheting came around in the 1800’s and has long had a place in history. In the 20’s you saw it being worn in the form of hats & dresses then in the 40’s it became part of the wartime effort, women making items for the troops. In the 50’s & 60’s the art exploded, patterns blew up and you could find items nearly everywhere, if you have never checked out some of the crocheted clothes from the 60’s, you really should do yourself the service and look it up! It seemed to fade off a bit, the world was changing fast and it was kind of left behind, but not for long….

Today you can find blogs, websites, patterns, pretty much anything your heart desires to see and know about the crocheting world right at your fingertips on the world wide web.

There seems to be this age-old argument of what’s easier or better? Crocheting or knitting? I personally have tried both, and I personally can NOT do either one. It’s not my strong suit. Which makes me thankful to have someone in our lives that holds this talent!

In true mermaid fashion we received a gift from our friend Molly in the form of a mermaid tail. From the minute my Mermaid laid eyes on it she was in love. She hugged it and wouldn’t let go! We had to make a deal that at bedtime it was to be put up until the morning. I awoke to not only a Mermaid in my bed, but a mermaid TAIL in my bed! When asked how it got there she told me “It got up and walked here!!!”

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She loves her tail, and I love that it was made by someone special. The other day Mermaid came up to me in the kitchen and said “Mama, I don’t want my scales to go away”, I said good, because they’re yours to keep! her response? “because the mermaid’s made a spell that gave them to me!” and I told her that was right.

Her wanting to keep them is a far cry from a few weeks ago when she told me they were disgusting, so I will embrace it. The gift means so much to us, to have people that embrace her story and help cheer her on in all the smallest of ways warms my heart.

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We thank you for our gift!

Molly is truly talented and I encourage you to take a look at her online shop. There will always be new things added!

https://www.etsy.com/shop/MollyMadisonHOC

Thanks for walking with us today,

Mermaid’s Mommy

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From hiding to Hollywood!

Mermaid’s disease has introduced us to all forms of Nevus, where occasionally we shed tears over the stories and difficulties everyone faces, we also get to celebrate.

Meet Marika Nagy from Manchester, a fellow member of one our support groups who got her chance to tell her story.

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My favorite line…

“My birthmarks make me special. The world would be a very boring place if we all looked the same.”

With Marika’s blessing we share her story, she is such an inspiration to all of us!

Click below to read her story on the daily mail!

http://www.dailymail.co.uk/femail/article-3809507/Girl-coverered-birthmarks-bullied-looking-like-cow.html

Marika – we look forward to seeing you on the big screen!

Thanks for walking with us today!

Mermaid’s Mommy

Opposites attract….

I owe my readers an apology, this month has been… well… shitty.  I have had so much negative and sorrowful energy surrounding me that I have failed to keep up with Mommy’s Mermaid, failed to return messages via FB, text & email to people reaching out and failed to really be present in anything. I am far from a stranger to tragedy or heartbreak but these past few weeks consumed me. I allowed myself to be sucked into things that were and are completely out of my control. It’s ok, we all do it, I know this, but why right now, do I suddenly feel like a weight has been lifted off my shoulders. Perhaps I wallowed in self pity long enough that it got old, maybe I realized things would slowly turn around, or maybe… it took one tiny small event to shift the waters.

Friendships are formed in the oddest of places. I have formed one with a fellow nevus Mommy on the complete opposite side of the country. Opposites attract right! Over the past year or so we have talked late into the night about life, family, our kids, this disease we despise. Shared products, ideas, information from our dermatologists, happiness and our anger.

A few nights ago a conversation started and things were said that changed my outlook. This friend of mine told me about her recent frustrations and shared about their Dermatology  visit that day. Their Physician told her that everyday she writes down four things that make her day great, and today, she would be one of those four. She told me she should start doing the same and that today, I was one of her four. She shared with her physician how much our conversations meant to her.

It’s mind boggling to me that I could be of any help/support to anyone, let alone be one of the great things in their day when I was struggling to find just ONE great thing over the past few weeks…. and that’s where it changed. Yes, I have been sad, I have been a big hot mess, to be honest, I’m not sure how I even managed to appear normal the past few weeks, but somewhere admist my travels down the rabbit hole, I gave enough to make someone elses day great.

It reminded me that no matter what we are all going through, despite our own depiction of what we are, we are ALL effecting one another. Take that in for minute…

Pretty wild isnt it? The smallest of gestures or words can completely alter ones mindframe.

Funny thing is… every time we talk, she is one of my four great things in my day. There are few people that understand Mermaid’s disease, even if they think they do, they dont ask about it or truly understand the fears that coincide with it… and they shouldnt have too. That’s my job, our job, as Mom’s, to carry that worry, to work together to not only build the confidence in our children about their “beauty marks” but build the confidence in one another to be that source of strength.

This disease cannot be cured by lotions, diet changes, medications or heaven forbid; surgeries. It’s here, to stay. Some barely noticeable to the eye, others… plagued with what others consider “unsightly”. Until you live it, I’m not sure you will really truley understand the feelings behind a child asking you to make it stop, to – in Mermaid’s words “take me to the doctor so he can take my scales” to a sobbing little one from the itching and pain or that dreaded call of being told you or your child has in fact developed complications.

What we cannot fix, we can absolutely, undeniably make acceptable. We can make this disease always be number one on our list of great things that happened today, for without it, we would not have learned the level of compassion, strength and protection we all own.

We often forget that where we cannot always control the things that happen around us, we CAN control how we react and handle them. I for one, was quietly reminded of this. Mermaid’s disease is often a foot note in our journey, especially these past few weeks, but wherever our path is heading, I am happy to have you all on it.

To my fellow Nevus Mommy, my friend and my late night confidant, I thank you for sticking by me, for encouraging me, and for always being there to sort things out.

I challenge everyone reading this to write down four things that made your day great.

We have a lot of great nevus stuff coming up, making a home remedy, the discovery of a new medication and some great events to share so forgive me for our brief absence but stay tuned!

Thanks for walking with us today,

Mermaid’s Mommy

Time to settle the score…

Mermaid has spent the past 7 days under the weather. She was severe enough that we spent an evening getting IV fluids. Thankfully she seems to be on the mend and we got to leave the house today for the first time in a week. While navigating her virus we lagged not only on our website but her daily Nevus care.

I did not expect a week of less attention on her Nevus to have much of an effect but to my surprise she complained both yesterday and today of her scales being bothersome both on her hand and under her arm. It was a good reminder that despite the circumstances, we need to stay on top of preventative care, so this week… Nevus 1 – Mommy 0.

Without any trials or research to share today I thought this would be a good time to update some photos.

I have stated before that Mermaid is especially protective of her hand and despite my efforts refuses to let me capture any good photos of it. It’s her most bothersome spot, she picks it, hides it, and states on a regular basis that it hurts or itches. Her complaints are minimal when we stay on top of our regimen but her hand definitely takes the cake in the nuisance department. Thanks to the help of Kinna Clark and geminIImages we finally have a few worthy photos.

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Her Nevus is equally thick on her wrist. In the next few weeks we have 2 products we will be trying to see if we can reduce the thickness and irritation. One of which we have been holding onto for several weeks now called WartPeel. Stay tuned for more information and results!

This coming week I intend to settle the score with our pesky Nevus!

Thanks for walking with us today,

Mermaid’s Mommy

 

 

 

 

 

 

 

 

Nature’s Miracle

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Feels like we have been out of order for a while! Our last trial ended 6/11 and I was so excited to begin the next with an eczema cream from an Oregon company named Wild Carrot Herbals. Unfortunately, Mermaid came down with a mystery rash and spent about 4 weeks fully recovering. We never did get a clear diagnosis of what it was but it cleared, so were happy! Within that time, Mermaid decided she enjoyed the eczema cream SO much, she used it in her hair, her bunny’s fur, slathered up her pillow and even shared with her pajamas! Needless to say we need to order another tub of it and moved forward with a different product.

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I have spoke about the health benefits of sea salt before but not Dead sea salt specifically. So what’s the difference? Well, to start, one is better for your skillet and the other for your skin.

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The Dead Sea is located between Jordan and Israel. Evaporation has shrunk the body of water over the past 10,000 years much faster than the rains can replenish it, leaving behind vast, concentrated salt deposits.

The concentration of salt in the Dead Sea is 10 times that of ocean water (29 percent as opposed to just 4 percent), making the Dead Sea salt much richer in mineral compounds, possessing high concentrations of magnesium, potassium, calcium chlorides and bromides.

It has been said that the therapuetic qualities have been sought after for thousands of years. Research has demonstrated that skin disorders such as acne and psoriasis are relieved by regular soaking in water with added Dead Sea salt.  One study[concluded that the high concentration of magnesium in Dead Sea salt was instrumental in improving skin hydration and reducing inflammation.

While shopping recently at a local market I stumbled upon this simple little gem.

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A company by the name of One with Nature creates this soap and distributes it in a bulk type setting in multiple scents.

This unique soap combines pure Dead Sea salt, argan oil, shea butter and essential oils in a natural vegetable base. Triple milled* right at the source — The Dead Sea. Absolutely nothing artificial. Delightful and relaxing lavender scent. Unwrapped, with no label.

*Triple milling creates a higher quality, longer lasting bar.*

As I was focused on Mermaid’s Rash, I forgot to snap a beginning photo of our trial but we ran from 7/1-7/22 a bit longer than normal as we healed.

What I discovered over time was such a pleasant surprise. Several other trials have provided additional hydration but this product seemed to reach deeper than the surface. Aside from her Nevus being less flakey the pigment lightened as well.

Mermaid’s nevus is largest by far under her arm which is a difficult location to prevent infection. We are contantly fighting inflammation, redness and soreness as a result. I can without a doubt state that as a result of using this product Mermaid’s nevus has improved. You can note the lack of swelling and redness in this picture taken a few days ago.

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I can also specifically note that Mermaid has not been saying owie or picking at her arm.

At the same time I purchased this bar I bought the shae butter one as well for a friend who’s child has severe eczema and she too noted a new found softness to his skin. These bars are ultimately the same product.

I am going to acquire another bar of this same soap, maybe a different scent to mix it up and extend our trial. As she remains guarded with her hand I want to continue our quest in this same direction and see if we can gain even better results with more time.

It’s a struggle because each day that passes her Nevus seems to spread or thicken so to look back at photos from 6 months or a year ago is no comparison. To note that most all my recent photos show inflammation and this one doesnt gives me hope.

I will post more pics and an update of this trial in a few weeks. In the meantime….

I highly encourage you to check out the companies website @ http://www.onewithnature.com and give some of their products a whirl. Can’t hurt right!

‘Beauty is how you feel inside, and it reflects in your eyes. It is not something physical.’

-Sophia Loren

Thanks for walking with us today,

Mermaid’s Mommy

The Why?

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I recently attended an all day training for work, you know, the kind you dread for weeks leading up to it. (No offense to my company,  its not you, it’s me). Lucky for me we had the best instructor possible and surprisingly,  I took something away from it that I could apply to my personal life.

We were asked to separate into our workgroups and discuss why we ended up working in Healthcare. I always thought I knew and believed it was my own decision.  Turns out after talking it out for a while my parents pretty much made that decision for me without even knowing it. All my decisions from school to company to department stemmed from their influence. I have to brag a bit too that one of the psychiatrist’s in my group had the best why ever, but I will spare you the details of our work why’s and get to how this relates to Mermaid.

I moderate comments on my site and occasionally I get a negative nelly that I choose not to publish. They think a post is pointless or disagree with my motive. So it got me thinking,  what’s my why for Mommy’s Mermaid?

True, when Mermaid was first diagnosed with linear epidermal nevus I was devastated, I searched for sites and stories with substance about success. So one could argue that my why was to create that place and maybe it is a little, but I think its deeper than that.

Yes, I fully understand that my daughter is a healthy thriving young child and that my deepest anxiety’s of tumors, cancer or other abnormalities are slim, but they exsist. They are real possibilities. The more prominent concerns I hold are those of the mental trauma. Self esteem issues, embarrassment,  ridicule for something she cannot control. An altered physical appearance to any degree can be more damaging to one than many understand.

I have had the pleasure of befriending several nevus owners and picked their brains about why they opted out of surgery, how they handled it growing up, and the limits it placed on them. I have listened to their fears and influences, and through those conversations, my why has come to light.

Do I really think that a $10 product from my local nature store or small business is going to cure Mermaid’s incurable disease? I dont know. Do I really think that relentlessly calling research centers across the country is going to spark a study of this underrated form of her disease? I dont know.

I say I dont know, because had you asked me 3 months ago if I would have a website that attracted 1,000 views in one day, relationships with organic business owners covering my entire state and be receiving gifts of products & support in my mailbox,  I would have laughed.

I believe that we see what we want to see in every situation. I saw an opportunity to gain knowledge and bring awareness and its slowly coming to fruition.  Yes, some of my posts may lack real data and seem silly to you. Maybe you think I am wasting my words, and to those of you who write me to tell me that, thank you. Thank you for pushing me to explore my why.

Why do I spend my time putting words to page that perhaps nobody will ever read?

As parents we put our all into our children. There is this well of love that pushes us to protect our young. When Mermaid gets older I want her to know that I did everything in my power to find relief, support, and strength from others living with the same blemish. I want her to walk with pride and not shame of her “birthmark”. I want her to know that she is not alone. If I can use my passion of writing to help soften the inevitable blows she will encounter, so be it.

So there it is. My why is not to gain followers, or find a cure. My why, is love.

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I will continue to search for answers and post blips that may seem of little value to you. If along the way we make some friends, find some cool products and can use this network to bring awareness to ALL forms of Nevus, well I would love that just as much.

Now excuse me while I return a call to a research center here in Oregon that has taken interest in my inquiry.

Thanks for walking with us today,

Mermaid’s Mommy

Can Mermaids see in the dark?

Armed with starbucks and Tom Petty we headed off in the typical PNW drizzle for an appointment with our normal dermatologist.

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The main reason for the visit was discuss treatment options for several spots that seem to bother my mermaid. Particularly a chunky spot on her wrist. Im not always certain that at 2 years old she really knows what pain is but she says owie and picks at it. Despite it being painful it seems to be growing and she asks me to take it off.

Our dermatologist consulted with some specialist at OHSU and nixed my original inquiry about co2 treatment. The down side is that it can leave scarring, have a painful recovery and really is not removing the nevus. Their suggestion was to have extraction done. The conversation always comes up that at such a young age that would require sedation. They recommended we wait until puberty to have the surgery done unless things drastically change for the worse.

The second recommendation was that we have an appointment with an opthamologist. ENS (epidermal nevus syndrome) is a rare congenitally acquired syndrome characterized by the presence of epidermal nevi and various other developmental abnormalities. One of which can be an ocular abnormality Such as a colobomas of the eyelid, iris and retina, corneal opacities and cataracts. Colobomas are found in about 0.5 to 2.2 cases on 10,000 births.

The good news is that even if cataracts orcolobomas are present, they may not effect her vision.

Regarding my #1 fear of the Wilm’s tumor I was told no imaging is needed, at well checks her Dr. Will palpate her abdomen and to watch for blood in her stool. The statistics show about 1 in 10,000 children are effected and her risk factor slightly raises the bar but its one of the fears I have to let go of. If it happens it happens and we will deal with it at that time.

So now where does our journey take us? Well, in a few short weeks we will see the eye Dr. And get answers there.

In the meantime I was given a slew of products to try on her hand to eliminate the roughness and appearance And one I purchased on my own.

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The Amlactin creams have whats called glyceryl stearate in them which is found naturally in animal and vegetable fats.

I am going to give each product a 2 week trial. I will take before and after pics of those 2 weeks to see if their is a visible improvement and note behavioral changes as well.

First up will be my personal choice of the Argon oil milk & honey soap. It is made up of olive, coconut, RSPO certified palm & argan oils, farm fresh goats milk and local honey. It is made here in Portland, OR. You can check out their products at http://www.camamusoap.com2015-05-12 15.35.16

I feel as though every time I understand my daughters disease another potential issue arises but thats why I am here, to educate myself and others alike on what this walk will look like.

As we continue to move through our journey I again thank all of you for reading and supporting us. I am striving to find all the best treatments for my Mermaid and continue to encourage her to embrace her special scales. Her dermatologist encouraged me today to have conversations with other parents she goes to school with to elimate questions or fears of what it is and I plan to do just that, starting with you 😉

Thanks for walking with me today,

Mermaids Mommy