Archive | May 2015

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.

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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

 

 

 

 

 

 

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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

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