Tag Archive | Mermaid

Lost in translation…

I feel like we have been consumed by the holiday season, in a good way, but off the grid for a bit. I finally got to work and made some changes to our website.

We now have a page titled “Honorary Mermaid’s” that will house stories about other people’s journeys, afterall – were all in this together! A Mommy’s Mermaid follower and fellow support group member will be featured in January. Looking forward to finally meeting in person and hearing her story.

All other pages have new and updated info so swing in and catch up!

I wanted to share a quick update after our wartPEEL trial. Mermaids nevus is still flat and smooth a month later. She is so proud of it and often shows me how her “owie is gone” – though inside I expect it will return in time, I will take all the days we get without an elevated, painful, itchy nuisance stealing her focus.

Here is a picture of before and now…

MyCollage_41

So stop in, see what’s new and we have more to come over the weekend.

Hoping this holiday season is greeting you all in good health and good spirits.

Thanks for walking with us today!

Mermaid’s Mommy

Peeling away our blemishes

Nov13

I am so excited to share results from our trial of WartPEEL. If you missed the post explaining what the product is just scroll down to the last one and read up. It really is worth educating yourself about and considering a try.

Being that this was our first trial I was indecisive on how many nights to apply it and the exact quantity so we fumbled through this a bit. In the end we applied the WartPEEL to Mermaids wrist for 3 nights.

In all honesty I was shocked after the first application and thought I had done something wrong until I read more about how it works and realized it was ok that it appeared “worse” than better.

So here is what we were working with before using the WartPEEL. Now remember, I chose the spot on her wrist because she verbalizes that it is bothersome to her. It’s difficult to tell in the picture, I should have gotten a better angle, but the crease on her wrist houses a raises patch of Nevus that causes her much angst.

Mermaid’s nevus is beginning to spread up her arm and hand but thus far is flat. This area on the wrist is much thicker than the picture gives credit. Its rough, bumpy, scaley and bothersome on many levels.

Now to see how it did…

Below are days 2 , 3 and 4 the morning after application.

a different view…

The medication requires that you allow 15-20 minutes to dry prior to placing tape over it for the night. However, it also states to wash your hands immediatley if you come in contact with it and I was given direction via phone to ensure my Toddler did NOT touch the product. That being said attempting to get a 2.5 year old to stay still and allow the medication to dry without touching it is slim to none. I covered it immediately after application leading to some of the medications spreading off the direct target and causing mild irritation.

We used one of our generous gifts from Wild Carrot HERBALS called triple Tumeric Salve to help eliminate the redness and swelling in the few days following. Turmeric has been used for thousands of years in Ayurvedic medicine. It offers incredible anti-inflammatory and anti-fungal properties. It is also known for making skin tags, moles, and unwanted skin growths to fall off or disappear.

Embrace the color, it will be with you for a while but learned it truly IS an amazing product!

In the end, nearly 2 weeks after we started this adventure we are both THANKFUL and HAPPY to show you that Mermaid’s Nevus is no longer present on her wrist.

In comparison from day 1 to now…

Allow me to answer any questions I feel might arise… Yes, the redness will continue to subside. No, it will not scar. We will not be using the medication again until it returns and creates problems.

What the pictures cannot show you, is that Mermaid’s wrist is now smooth. No more callus like lesions.

Mermaid will even tell you herself, her owie is all better. I am thrilled with the results and so humbled that this was brought to our attention.

Remember I told you a friend, and fellow Nevus Mommy came to me privately with her own experiences. One major struggle for their families little is that she has a patch of nevus that grows so thick on her heel and foot it is painful and at times impossible to wear shoes.

Here are a few collages of their WartPEEL results. Knee, foot, ankle.

AMAZING!!!

It so important to remember while gazing through these pictures and trials that this is not just about cosmetic changes. Removing raised painful patches of nevus means comfort. Im sure you can imagine how painful it can be for everyone, both physically and emotionally, those mornings our little ones cried because their shoes hurt or the coat sleeve was too tight and rubbed. One small adjustment in their quality of life is worth every moment we dedicate time to a regimen.

This weeks score… Nevus 0… Mommy’s 2!

Thanks for walking with us today,

Mermaid’s Mommy

Time to settle the score…

Oct19

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.

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

A fish tale…

Oct5

The legends of Mermaids have long been discounted by modern-day society, they exist only in folklore and fairytale’s. Perhaps they never really existed, but maybe, just maybe… there is truth to those stories.

Some believe Mermaid’s are aliens, coming to us through a wormhole; others, that they are a bad omen – set out to lure men of the sea to their death, and then, the most popular are the tales of a half fish-half woman creature sitting upon the rocks and shores brushing her lavish long hair while singing to her God Neptune in angelic, hypnotic voice. These tales claim that Mermaid’s had a kind demeanor and saved many men from an uncertain fate.

Believer or not, the conundrum of a Mermaid is nothing shy of fascinating.

It is said that a Mermaid’s complexion is pale and their skin is flecked with shimmery scales. Though you may not notice this as they tend to cover themselves with their wonderous hair.

Mermaids feed on small fish and kelp. I once asked my Mermaid what she ate when she lived in the ocean and her response then and now has always remained the same. “Little fishes!” She is adamant that at no time did she ever eat crab, seahorses or big fish – only “little fishes!”

Coming from the sea Mermaid’s require hydration so their need for water is their biggest weakness. I read once that while in human form they donned webbed hands and feet.

Aquamarine, known as the “gem of the sea” is spoke of in legends to be tears of Mermaid’s that hold the power to keep sailors safe at sea. Others claim it was the sacred stone of Neptune, washed upon shore as a gift from the God’s.

Mermaid’s have the ability to control basic elements and weather, they can transform into smaller mammals and even fade away becoming invisible. They love to be free but it is said that they grow lonely and have no power of their need for love. Its is believed that this need to be loved is what brings them to the surface. Watching men from afar feeding their curiosity. during shipwrecks and storms they would save men and it is then, that they would fall in love with humans.

Ok, so maybe the idea of a half Victoria’s secret model – half tuna, lounging on the jetty stalking pirates is a bit far-fetched, but I will tell you this – something that has the ability to cry pricey gemstones and part the seas receives a glimmer of my belief. Let’s face it, I have no intentions of meeting my own uncertain fate for doubting her being.

Fact or fiction the idea of my baby once being a Mermaid has brought light to an otherwise dark subject.

As Mermaid and her lifelong pal go through life maneuvering their oddities of scales and webbed feet, they are bound to face struggles. Perhaps struggles of pain, itching and surgery, or perhaps bigger ones. The need to hide their gifts, feeling different or being teased. Together, we will face those struggles as we are faced with them. For now, if only for a while, I can enjoy my Mermaid embracing her sea life. When she tells me stories about eating “little fishes” and swimming so fast with her tail, I will smile. If she believes her scales will disappear if she doesn’t take a bath or use her special soap – I believe it too.

I recently had the pleasure of a local photographer, who I now call friend, take interest in my blog. She generously spent a day with us, a close friend of ours and our little blessings taking pictures. Here’s the ringer – not only did she arrive at the location but brought a second photographer and a wooden sign she had purchased then had designed by another source. Her genuine desire to help raise awareness is beyond appreciated.

I cried driving home that day. I had to leave rather abruptly as Mermaid needed a nap in the biggest of ways so I never really got a chance to tell everyone what they did for me.

I choke up as I write this in a happy, humbled way. You see, time has proven that Mermaid’s case is far less severe than it could have been and our journey thus far has been relatively easy. I could stop writing about it and be satisfied with how far we have come, but I have to remember why I started this. I remember how I felt after first learning of her disease and the sense of loneliness. I remember that I longed for someone to tell me it was going to be ok. I can not tell everyone its going to be ok, because the truth is, for some, it might not. I can not think that a cute little blip about a mythical creature will warm your heart, but I can show you, through this encounter that people you would never expect to care, do. For 4 Women to lend their talents, oddities and identities to our purpose, I thank them.

You have assisted in one small step towards teaching the world about nevus owners.

I thank you for seeing our vision and letting these two little girls be portrayed as fierce, powerful Mermaid’s, if only for a day.

So today, Kinna Clark, Geneva Richardson, Coleen Papike-Robbins and Andi Hakanson, you are our honorary Mermaid’s. May you find freedom in the seas!

To see more work by Kinna Clark go to:

Www.geminiIImages.com

Thanks for walking with us today,

Mermaid’s Mommy

Prognosis Happiness

Sep27

To date, this is the most important piece I have ever written. Most important because our family can now embrace Mermaids disease with a true diagnosis and make constructive but cautious decisions about our future with the right information.

We have so much to share you might want to pause here and move somewhere comfortable…

Ready???

This week we not only received the long anticipated biopsy results but got to meet Mermaid’s new dermatologist and I must say, she was a ray of sunshine in our cloudy little nevus world.

The next sentence is my favorite collaboration of word’s I have ever put to print. MERMAID DOES NOT HAVE CANCER. There is always that higher potential of cancerous cells developing in nevus owners but we are officially free & clear at this time. To be fair, we knew that piece a few weeks ago. Our Primary Care Dr. let us know but we wanted the final reading before sharing. Needless to say I slept a smidge better the night we found out.

Here is our official biopsy reading:

-Epidermolytic hyperkeratosis.

Exam demonstrates aconthotic and hyperkeratotic epidermis with focal dyskeratosis. The differential includes linear epidermolytic epidermal nevus and epidermolytic acanthoma.

So what does this mean? Officially, this means that Mermaid has linear epidermal nevus, which occurs in 1 out of 1,000 people. However, the rare subtype of epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide.

There is a grey area, we cannot yet rule out ILVEN. The biopsy site did not show the specific subtype but Mermaid has had several occurences that I was able to photograph and share with her new dermatologist. She agreed it was inflammation and said it may in fact be an early onset of ILVEN. We will wait and see what the nevus does from here on.

I know not everyone understands what this means so I’m going to break it down a bit more.

Linear epidermal nevus (LEN) is an uncommon skin condition. It usually affects the limbs and torso on one side of the body. The lesions are typically present at birth. LEN is the result of a genetic abnormality. It is not inherited but arises from somatic mutations in cells that occur after conception.

Linear epidermal nevus follows the lines of Blashko, which are invisible on the skin but thought to follow the paths which cells migrate as the skin develops before birth.

LEN can be linked to complications such epidermal nevus syndrome; abnormalities effecting brain, internal organs, eyes or bones. Tumors can also arise within the lesions. They may be harmless and simply need removal or may be a form of skin cancer.

We can happily report that as of this moment Mermaid does not harbour any of said abnormalities. All our tests and check ups thus far have come back clean.

If she does indeed develop ILVEN the potential treatment options and complications change a bit but the two are extremely close in comparison.

We were also told at our visit that Mermaids chances of developing a Wilm’s tumor are very unlikely as she would have already developed some of the other abnormalities effecting the organs. (I wont personally celebrate until her 6th bday!)

Mermaid occasionally gets small lesions on her scalp which we were asked to come in and have swabbed next time they occur. We were also able to discuss the possibility of Mermaids overheating being correlated. This is more common with giant nevus but it may be that Mermaids sweat glands are not working correctly in the area of her nevus. We cannot say definitively this is or is not the cause as there is no way of knowing for sure and we will continue to monitor it.

From the beginning of this journey I have been plagued by the thought of my Mermaid being teased or self-conscious about her “birthmark”. As we have learned more about her disease and gotten to know fellow Nevus owners that fear has only grown. The emotional effects can be devastating for Nevus owners of all kinds.

We have been lucky thus far that Mermaids nevus is mostly unseen by others with the exception of her arm & hand. Mermaid is very protective of her hand and rarely lets me photograph or touch it. At our appointment it was noted that her nevus is starting to come up over her palm. I can pray this doesn’t happen but on the chance it does I was FINALLY able to have that conversation about what treatment looks like in the future.

In the future, our dermatologist offered a form of cauterization in office that can help flatten and smooth the skin. We discussed both the pluses and deltas of co2 with a decision to avoid that route and of course, the talk of removal.

On the chance Mermaid’s nevus continues to thicken on her hand and move over her palm we will need to take action. At school age we will go through with removal. This can be done by our healthcare system here opposed to out of state which we originally thought.

This decision is based not only on a cosmetic and emotional basis but on the grounds of physical irritation it has caused.

I feel like it has been a struggle to get to a place where we understand our path moving forward; but we have arrived.

Our dermatologist is supportive of our trials, we will see her once every 6 months unless needed sooner. If Mermaid inflames on a more chronic basis or develops the spots on her scalp we will return. We will monitor her body temperature and physical discomfort, being conscious of potential tumors. In a few years we will revisit the surgical options and until then, we will continue our journey with LEN.

I know that our recent decision to find new care and push for more solid diagnosis and treatment information will free me from so much fear.

To all you rare and beautiful nevus owners, we hope our struggles to find the right care and options brings you a sense of direction and understanding.

Thank you to everyone for supporting us up to this point.

Thanks for walking with us today,

Mermaid’s Mommy

Signed, Sealed, Delivered…

Aug28

Phase one of operation Yale is complete. We are well on our way to obtaining Mermaid’s entire genetic code. Well, Yale is on their way. We will not receive the report directly but any medically-relevant results will may be obtained through the right channels. Only took me a month to get it all packaged up and out the door! Which sounds about right for the life of a working Mom. We are excited to have Mermaid’s information hitting the skies on its way to the East Coast.

In case you missed the last update I will give you a quick reminder. Mermaid was invited to participate in a research study of people with skin disorders at Yale University School Of Medicine/Yale-New Haven Hospital. The goal is to find out how inheritance of specific genes causes some people in families to develop skin diseases.

The first step was to literally, put our life on paper. Parental consent, family skin conditions, symptoms, origin, PCP & Derm info, Grandparents information and other medical history of the family. Seemed easy enough, until every time I started working on it I got one line done and one of kids or pets needed my full attention at that exact moment. Monkey snacks and 16 trips to the potty an hour are of the utmost importance in our house, but we finished!

Next was to collect Mermaids biological sample, aka… spit. Saliva can provide much of the same genetic information as the blood sample and being that we are on the other side of the country makes completing this portion, much easier.

Mermaid’s DNA will be screened for mutations and then stored indefinitely for future use.

Little Miss Independent insisted on completing this part on her own, (45 min later we had about ½ of what was needed, so Mommy stepped in).

With our sample capped and everything tucked neatly into its package – I felt accomplished.

On a side note, Did you know the workers at fed ex drop off’s can’t handle anything marked biological substance. Interesting fact for the day. We are so lucky to get to be a part of the research surrounding LEN and ILVEN and hope our contribution makes a difference.

Stay posted for our biopsy coming up next week!

Thanks for walking with us today,

Mermaid’s Mommy

Ivy leagues of the sea…

Aug12

On our journey to navigate through Mermaid’s disease we have learned that the statement “It takes a village” could not ring more true. We have found that the knowledge base and research surrounding LEN/ILVEN can be very limited at times so we tend to rely on the experience of others with the same condition to learn and share from one another’s experiences. When a fellow member of our support group reached out to me after reading my blog about a potential opportunity to aide in research of the disease, I was elated!

This week we received an invitation to participate in a research study of people with skin disorders at Yale University School of Medicine/Yale-New Haven Hospital. The goal is to find out how inheritance of specific genes causes some people in families to develop skin diseases. This is done by analyzing DNA molecules. Some studies may take years to complete and they may never find the true cause of the mutation, but if they do, they may be able to develop better tests and treatments in the future.

There are several steps coming up that we will share with you along the way including a skin biopsy and a biological sample. The biopsy can take 2- 6 months to get a final result on but we are excited to be on a path to having it done as we have asked about the necessity of having one from day one. Where LEN/ILVEN dont seem all that different they really are, so the more I learn about the different types of nevus the more it becomes relevant to me that knowing the pathology will pave our journey moving forward.

Coordinating care between physicians can be a slippery slope. It goes back to my experience thus far that each physician has a different level of knowledge & comfort, a different idea of what is and isn’t necessary and a different opinion about treatment. One piece of advice I have received from many other parents is to get a second opinion, the more eyes the better. Which means, we have a busy few months ahead of us. As we seek to get a second opinion, coordinate our biopsy, perform the biological sample and sift through our stack of paperwork I can’t help but be thankful for how far we have come.

When I started Mommy’s Mermaid my intention was to build a place I could chronical our journey and others could stop by to find common ground and support. It felt like a long shot but this is just one example of how it has served it’s purpose. Thank you Lauren McAdam for recognizing our eagerness to be a part of the bigger picture and reaching out to us. We are eternally grateful and proud to call you our friend.

Thanks for walking with us today,

Mermaid’s Mommy

Nature’s Miracle

Jul23

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.

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.

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.

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.

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

What Facebook Means to Special Needs Families

Jun17

I could not relate more to this than I already do. To be honest I have learned more about Mermaid’s disease through our support groups than her Dermatologist. So Dido… Thank you Mark Zuckerburg for creating our space and Tales from the plastic crib for recognizing it!.

Tales From the Plastic Crib

Facebook is ubiquitous these days; every website, article, operating system and mobile device has a way to share directly to it. It’s become so popular with the adult masses that today’s teenagers find it lame (which makes me feel ancient and lame, myself).

These days it’s mostly a telephone and email replacement for extended family updates. Aunt Judy up in Michigan can see how sweet Bobby and Sally are doing without leaving the comfort of her couch.

It’s a dumping ground for Instagrammed pictures of people’s kids, dinner, and anything else they happen to take a picture of that day. It’s confused itself into thinking it’s Twitter, and added the ability to use hashtags. It’s where people feel comfortable airing their political and religious beliefs and end up getting into comment arguments with that guy from high school they barely remember, but accepted his friend request anyway.

Yeah, Facebook is…

View original post 343 more words

Dermatologist recommended

Jun16

Next up on our menu of trials was Amlactin Ultra Hydrating Body Cream. We have used Amlactin in the past when Mermaid was first diagnosed, but not this specific line. We were given this product by Mermaid’s dermatologist who strongly supported it.

Below is the information provided by the product’s website.

The #1 moisturizer brand recommended by dermatologists for rough, dry skin¹
Restores lost moisture and softens severely dry skin—apply twice daily for best results
Works to exfoliate dead skin cells—returns dry skin to its natural, healthy state and improves overall appearance
With rich humectants and creamy emollients—delivers the kind of smooth skin texture you’ll love

AmLactin Ultra Hydrating Body Cream is specifically formulated for severely, persistently dry skin areas needing extra attention. With our patented ULTRAPLEX formula, this clinically proven cream gently exfoliates and intensely hydrates for long-lasting moisture and serious relief.
AmLactin Ultra Hydrating Body Cream provides triple action alpha-hydroxy therapy. Simply put, alpha-hydroxy therapy combined with rich humectants and creamy emollients creates a cream for dry skin that not only repairs but also softens.

5/28/15:

Throughout our trial I noticed no change in either appearance or physical irritation. In fact, during this time the thickness of the nevus on Mermaid’s hand increased. No corolation to the product, simple coincidence, and once again, she declined to let me photograph it. However, there was also an increase in dryness beneathe her arm and slight thickening.

6/11/15:

It’s note worthy that the Oregon weather has been warmer than usual so it’s more difficult to hydrate at this time. If Mermaid had it her way she would be living in the pool day and night. That being said we probably wont choose to add this product to our bag of wonders because it was applied multiple times a day, difficult to remember at times and didn’t seem to mesh with Mermaid’s skin type, but that doesnt mean it wont work for you! We are all different so your skin may take to it very well.

I am REALLY excited about our next product we are going to try.

Another local Oregon business so generously sent us this to give a whirl on our journey. Thank you Wild Carrot Herbals!

DON’T FORGET… I want to hear what you have tried, are trying or stepped away from.

Stay tuned!

Thanks for walking with us today,

Mermaid’s Mommy

Mommy's Mermaid

Our Journey

Tag Archive | Mermaid

Lost in translation…

Peeling away our blemishes

Time to settle the score…

A fish tale…

Prognosis Happiness

Signed, Sealed, Delivered…

Ivy leagues of the sea…

Nature’s Miracle

What Facebook Means to Special Needs Families

Dermatologist recommended