Tag Archive | Mermaid

Do Mermaid’s wear glasses?

I have never had any concerns about Mermaid’s vision, I figure if she can get up at 2 am, navigate to the fridge, get the juice and bring it to me in bed all in the pitch black, we are pretty safe. However, a specialist at OHSU (Oregon Health & Science University) advised we see an opthalmologist to check for any abnormalities. This was conveyed to us at our last check up with her normal Dermatologist.

Why you ask? Well, there is a syndrome connected to Mermaid’s condition called Epidermal Nevus Syndrome.

Epidermal nevus syndrome’s are a group of rare complex disorders characterized by the presence of skin lesions known as epidermal nevi associated with other abnormalities. Most often affecting the brain, eye and skeletal systems.

The ocular abnormalities may include cataracts, clouding (opacity) of the cornea or partial absence of tissue of the iris or retina (colobomas).

I was lucky enough to speak with other parents in our support group that had experience with this and see some pictures of “keyholes” in their little ones eyes. Going in I felt confident we would be cleared of any abnormalities but there is always that chance. Below is an example of what a Keyhole may look like.

coloboma
We could not have been blessed with a nicer Dr. She sat on the floor with Mermaid, used puppets and let her play with all her instruments. It was fairly lengthy as they had to dilate her eyes with tests before and after but because the staff was so great she was a superstar. The 2 suckers and stickers didn’t hurt either.

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We are happy to report that Mermaid was cleared from both cataracts and colobomas at this time. She does however, have Myopia.  She scored slightly under where a child of her age should be on the diopter reading meaning that she may end up needing glasses.

Wait! A mermaid that is nearsighted? How can this be? Mermaids need to see through the ocean waters, they don’t wear glasses, they CAN’T be nearsighted! They just can’t!

Or can they? I found this little gem today and feel as if it was written just for Mermaid and I.

 

oliver
When Oliver’s explorer parents go missing, he sets sail on a rescue mission with some new, unexpected friends: a grumpy albatross, a nearsighted mermaid . . . even a living island! But the high seas are even more exciting, unusual, and full of mischief than Oliver could have imagined. Can he and his crew spar with sarcastic seaweed, outrun an army of sea monkeys, win a fabulous maritime fashion contest, and defeat a wicked sea captain in time to save Mom and Dad?

Did that just say a NEARSIGHTED MERMAID? I am already inpatiently awaiting our new book and will be watching my mailbox like a hawk.

I must admit, the thought of my Mermaid in glasses is too adorable.

A little myopia is nothing, today is a good day. Mermaid 1 – Nevus 0!

Thanks for walking with us today,

Mermaid’s Mommy

 

 

 

 

 

 

Liquid Gold

The result’s are in! In our attempt to find that miracle cure for an incurable disease we are running 2 week trials of various products and documenting results.

On an average of 4 times a week I catch Mermaid picking at her hand or asking me to get the owie off her arm and more recently has been picking and whimpering about her armpit. To reduce that by even one day would be a success for our trial.

First up is Camamu’s “Liquid Gold”

Camamu is a local company located here in Portland, Or and I was lucky enough to get blessings from the owner to try and share results of their product.

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Day 1 : 5/13/15

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We used the Liquid Gold every other day on our regular bath schedule. She is very protective of her hand and would not let me photograph it on this day.

After one week of use I noticed Mermaid was “picking” less. She asked for her “special soap” at every bath session. I 100% believe that after 2 weeks of use, the Liquid Gold added hydration to her skin and lessened the agigation to a certain extent. Her hand seemed far less of a worry to her and to me, that’s improvement. The lighting in the first photo is not that great but you also tell that a very prominent red, raw spot is cleared up.

Day 14: 5/27/15

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Unfortunately, and related to the product in no way, shape or form, Mermaid developed a new line of nevus down her arm during this time.

Where we may not have found the miracle for an incurable disease (darn it), we did find a quality product I would reccommend to anyone looking for something new to help hydrate. We will keep a bar as a staple as Mommy became a fan herself.

To check out more products by this company or give the Liquid Gold a test run, visit their website at http://www.camamusoap.com

I will archive these results on my “Got any secret solution’s?” page so we can look back at everything tried.

Next up on our list is Amlactin ultra – given to us by Mermaid’s dermatologist.

Be watching for results!

Thanks for walking with us today,

Mermaid’s Mommy

Butter makes everything better

It was like Christmas when I got home today and found a package addressed to me on the other side of the gate. I had that package open before even turning the car off in the driveway!

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Inside were quite possibly the cutest little packages of products for my Mermaid to try.

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An Oregon herbal company named Wild Carrot Herbals generously sent me 3 jars of their products and a trial size “gaia goo healing salve”. They were referred by another Oregon company called Camamu who’s soap I am trialing.

Below is a list and a small description of each treasure.

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#1. Triple turmeric salve : for thousands of years, the bright yellow powder known as Tumeric has been used as a powerful anti-inflammatory and for its anti-tumour properties.

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#2 Borage butter eczema cream: created for the sensitive ones in our lives – and conditions such as eczema, hives, itchy, or very dry skin.

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#3 Rose geranium & spikenard: Suggested for fungal diaper rashes, ringworm, infected fingernails and even odorous feet!

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#4. Gaia goo healing salve: An all purpose salve, useful for scrapes, cuts, chafe, poison oak & scars. Safe for the whole family.

Wild Carrot HERBALS is located in Enterprise, Oregon. Their goal is to create honest, nutrient-rich, joyful products that are reasonably priced for the entire family.

I am overwhelmed with the generosity of this company beyond appreciative of their interest in our journey to find relief.

I am going to add the borage butter to my list of trials. I will post each product as I finish and archive them as well on my “Got any secret solutions?” Page.

If your interested in checking out other products from this company I strongly encourage you to check out their website at http://www.wildcarrotherbals.com .

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Be watching for our first results next week!

Thanks for walking with me today,

Mermaid’s Mommy

Salty sweetness for the soul

2015-05-17 16.24.22 If you placed a sweet and a salty treat in front of me 100% of the time I would go for the salty one. 100% of the time my Mermaid, like most 2 year olds, would go for the sweet. So today I decided to combine the two for a treat to benefit us both.

Sea salt has been used for many centuries for health benefits. Did you know when you add sea salt to warm water it opens your pores? It is known to aide in chronic inflammatory skin diseases by helping your skin maintain hydration. It may also decrease bloating and help muscle aches.

Ahhhh, the red rose, an international sign of love. Does it really add benefits in your bath? Of course it does! Aside from the pleasant aroma the natural oils in rose petals put off it can leave you feeling relaxed, sleep better and lower anxiety levels. I opted to pour boiling water on some cut petals and allowed them to soak several hours to reap the benefits of the sugars. Rose water acts as a mild astringent reducing inflammation in the skin and aiding in hydration.

We all know chocolate is delicious but it can also improve brain function, act as an antioxidant and increase blood flow to the skin. Add the sea salt which has other benefits when ingested, such as maintaining healthy levels of electrolytes in the body, and poof, a beneficial treat.

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My husband said it looked like we were going on a romantic date and I am just fine with that. Here’s why, when Mermaid walked into the bathroom she lit up and squeeled “flowers and chocolate Mama!”  if I create one special moment in my Mermaid’s day, its been a success. If that special moment is not only good for her soul but for her skin as well, its been a triumph.

2015-05-17 18.00.30 Whether your looking to find a soothing solution from your cupboards or prefer to purchase a product there are millions of options. Perhaps start by visiting another Oregon bloggers site at  https://harmonizenskin.wordpress.com/  and check out some of their products.

“Childhood is the world of miracle and wonder…as if creation rose, bathed in the light, out of the darkness, utterly new and fresh and astonishing. The end of childhood is when these things cease to astonish us.”

Thanks for walking with us this evening,

Sweet dreams,

Mermaid’s Mommy

From sea to land – a tale of scales

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Below is the first post I ever wrote, I choose to keep it up as a reminder of where this all started. I now love to share other people’s stories and learn about all forms of nevus. By no means am I an expert but have come a long way in understanding what our future holds. When I start to question if I should continue this blog I come back to this post and remember the place I was in at the very beginning. Welcome, and if your new… start here!

Hello there, however you got here, I’m glad you made it. Welcome to Mommy’s Mermaid, let me tell you a little about our journey.

In 2013 our family was blessed with a beautiful baby girl. From birth I noticed this odd spot on her arm, multiple Dr’s assured me it was nothing, just a tiny birthmark and home from the hospital we went. As she grew, so did this tiny birthmark. Eventually filling her left armpit, around her ribcage and down her arm onto her hand. Now it didnt resemble a birthmark at all, more so a fungal infection. Multiple creams and a perplexed primary care Dr. Later we landed in dermatology.

I will never forget how calmly I was told that what my daughter had was called a nevus and it had no cure. A type of birthmark that could potentially take over the left side of her body and to be conscious of something called a wilms tumor. Keep it moist, avoid harsh soaps, see you later. I was so fixated on the fact that it would be there forever that I didnt ask the questions I should have.

We left and went for lunch, I got out my paperwork and googled the diagnosis shown of “melanocytic nevus” and a wilms tumor.  If your not familiar with either, as I was not, take my word for it, what begins to pop up is a parents worst nightmare. Cancer, cancer, cancer. I felt sick, confused, sad. Why was it taken so lightly? Whats going to happen now? I immediately emailed the Dr. Who said a modifier didnt populate and what she had was not melanocytic but a linear epidermal nevus. Better but still not good.

I cried a lot in the following days. Sometimes with my family, sometimes alone. I thought about what the kids would say in school, would she wear a swimsuit when she was older, what about her prom dress? Would she develop kidney cancer, how would I know? Will she be tough enough to handle the vain criticisms I knew lay ahead?  My anxiety’s plagued me. I searched night and day for anyone like me. Another Mom who felt sad or scared, a positive story about someone in adulthood with this disease and time and time again I came up empty handed.

I researched and did my due diligence on the disease and made a decision right then to start raising my daughter not to be ashamed of her “birthmark.” I jokingly said they were special scales she got to keep from when she lived in the ocean as a fish. Hey, she does love water! A friend said can’t you at least make it something better than a fish? Like a mermaid? and it stuck. Her special scales from when she was a mermaid. Mommy’s Mermaid.

I wanted to create a place for people to come for support. A place we can talk about products that have or have not helped, challenges and successes.  A place where we can help eachother understand more about the disease and feel safe. A place where families like mine can find eachother just as I needed so badly in the beginning and am sure I will need again throughout our long journey. I pray for those who’s nevus has resulted in surgery and or cancer or left them feeling alone or insecure. Please know, you have a friend in us.

I hope in time to gain followers, strength and knowledge as I publicly share our walk down this road.

Your Truly,

Mermaids Mommy