Tag Archive | ILVEN

Fish out of water…

My Goodness, It’s been ages since we have given any kind of update, which might lead one to assume that all has been calm on the bay front but it’s actually the complete opposite! Spring led us to Doernbecher Children’s Hospital where we obtained some very useful information but between her short baseball season and additional appointments we have been noticeably absent from our virtual home.

We have many posts coming soon about all Mermaids new discoveries throughout Spring but today there is one main issue at the forefront of our fins. I distinctly remember one of our very first appointments a brief mention that “she may have some blockage of her sweat glands” and that was that; until now there has been very little thought placed on that statement but I never forgot. Summers have always been fine, she often claims she is “hot” on a regular basis and keeping clothes on her is a mission in itself but honestly, I chalked it up to being normal with NO concern whatsoever.

About a month ago we were at an outdoor birthday party, the day was especially hot for our area and the yard offered little to no shade. They had games with water balloons, plenty of cold fluids and ice cream so even though it was a scorcher, everyone tolerated it just fine. Mermaid has long been asking for a new play kitchen and the little girl celebrating her big #5 just happened to have one in the house along side her Mom’s real kitchen. Throughout the party I kept finding Mermaid in the house near that kitchen, My initial thought was that she just wanted to sneak off and play with it so I continuously led her back out to the party in the yard. She participated in a game where they placed water balloons on a spoon and had to run to the end of the yard and back without dropping their balloon. As I stood at the end taking pictures I noticed she seemed more flush than anyone else. When they were done she quietly went and sat on some steps by a bubble machine. I snapped a picture and when I set my phone down I noticed her color had drastically changed to a purple shade and her breathing seemed somewhat labored. I went from this is just normal hot weather behavior to “Oh my Gosh what is happening” in 2.7 seconds flat. I scooped up Mermaid and ran her in the house, she had no energy and I took her dress off as quickly as possible. For the first time in our lives I instantly knew what was happening. She was truly overheating. The left side of body where her nevus lives was bone dry and the right side was drenched. She begged me not to put it back on and began to cry. Within minutes I apologized and rushed her to the car and blasted the a/c. By the time we got home, almost 45 min later she was still roasting and eventually threw up. I felt terribly guilty for having her out in the heat like that and prayed it was a one time fluke.

Not so lucky, a few weeks later we were at a family members graduation party, again, it was a hotter than normal day for the PNW and we were outside. We were at my brother’s house and there was a bit more shade than the previous party plus they have a small pond that the kids typically flock too to catch frogs and tadpoles. More aware of her potential to overheat I kept a closer eye on her and just like clockwork, she went from fine to that scary shade of purple again within seconds. This time family was present and keeping an eye on her as well and because she refused to miss the chance of catching a frog we made her continuously return to the table for drinks of cold fluids, gave her ice cubes to hold and a wet cold rag to hold on her face and neck. Just as before the concern grew to the point that we chose to make an exit but this time left before it got so bad she threw up!

Just yesterday we went to visit my parents at an outdoor market where they had a booth set up, it was significantly cooler than the other two days that incidents occurred but still hot and I was very aware of the potential. She started out by sitting in my parents chairs eating some lunch we brought but shortly found a table in the shade behind their booth at a local restaurant. She seemed happy there but a worker quickly approached us and asked us to leave the table. I kindly explained that she would be done eating in 2-3 minutes and pointed out that there were multiple other open tables so I bought Mermaid a short window but her retreat from the direct sun ended quickly. We were not there long before she sat on the ground and proceeded to try to take her clothes off. I quickly stopped her and said No baby, not in public, when she grew weepy and said she couldn’t wear her clothes anymore. She proceeded to tell everyone she was too hot and that was my queue, off we went. Once in the car and a/c she used my water bottle to hold on her face and neck and kept asking me to turn the air on, despite the fact that it WAS on and cold enough I was looking for a sweater. Within minutes of being home she threw up. Daddy and I go her some cold ice water, a fan and had her lay down to rest while continuing to cool off.

So here we are, a random overcast day and I am reaching out. My gut says that this reaction is linked more to the EHK than LEN and is just now coming to life as her Nevus has slowly spread & thickened over her sweat glands on the left side. I can not find any direct information linked to her LEN that suggests this is a potential side effect but most Ichthyosis articles have share a direct link to overheating. Additionally, I read an interesting piece stating that the rapid turnover of cells in individuals with Ichthyosis require more energy thus meaning the host needs more calories to grow. Maybe, JUST maybe, this could be a link to Mermaid’s insatiable need to always be snacking like a teenage boy. I also cannot say that any of our followers with ILVEN or LEN have spoken to this directly and perhaps those with congenital, Giant or Ichthyosis can shed more light on this topic?

Mermaid falls in this weird category where she has three (One we recently received @ Doernbecher that we will share later) separate diagnosis working together to complicate the understanding and treatment. Is it simply that we need to acclimate her body leading up to summer or trips to warmer climates or is there truly no way to prevent it? Will sports be an issue? I am reaching out today looking for your expertise, tips & tricks to help us in our newest conundrum. I am at a loss as to who we should go to first to discuss it. Her PCP, her dermatologist or her genetic specialist @ the children’s hospital. Help guide us!

Coming up we have a new trial of a natural homemade cream thanks to a local friend, will dabble in some more salve making ourselves with intentions to get some out to a few of our special followers and a post about some other new discoveries added to Mermaid’s ever-growing list of diagnosis.

If you have experience in the overheating world please share your thoughts! We look forward to hearing your expertise and jumping back in to some nevus focused time!

Thanks for walking with us today,

Mermaid’s Mommy

MollyMadison making smiles!

Oct3

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!!!”

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.

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

From hiding to Hollywood!

Oct2

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

Lean toward happy…

Sep29

Those of you that know me personally, know that I am a huge baseball fan. Where my team’s season is about over with basically no shot in the series I will still be glued to what’s happening all October. I recently read an article rooting against the Cubs to take the World Series and before everyone in Chicago gets upset at me for agreeing, let me tell you why. You see, the Cubs haven’t won a world series since 1908. Yes, they deserve their moment in the limelight but if they win, we lose one of the last connections to old-time baseball. To me, the time of the greats. The time where players were heroes, before other sports dominated the world and baseball was the leader. If they win, what will they grumble about for the next 100 years? I love this writers perspective, but win or lose, I love the sport.

There is a special little boy named Dylan who also has a love of the sport and right now, he needs you to help him hit a home run this October. October 3rd Dylan will be going in for his 27th… yes, you read that right, TWENTY SEVENTH surgery.

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Dylan was born with Giant Melanocytic Nevus. A rare condition found in 1% of infants. Additionally he has Neurocutaneous Melanocytosis (NCM) which means he has it in his brain and spine as well.

Dylan’s form of Nevus runs the risk of melanoma and to help prevent that he will yet again, be undergoing another surgery.

In the photo on the right, Dylan is holding a picture of his friend Christian wrapped in the Lord’s arms. Christian and Dylan became friends when Christian was only 6 months old. This week marks Christian’s 2 year Angelversary. Christian lost his battle with Melanoma that was present in his Nevus at 19 months of age. I speak frequently about the potential side effects and our fears, our family has also endured the loss of a friend to Melanoma but Dylan’s fight reminds us all too much of those painful realities.

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(Dylan and Christian a few short months before Christian’s passing)

Christian’s Mom shared with me that the two boys and families became fast friends, following Christian’s passing Dylan even stood in her wedding. His Mom wanted me to share with everyone reading this that even in his darkest times, Christian was always happy. A doctor on the palliative pain team at children’s hospital said he’d never seen a baby so good spirited. He said ” no matter what gets thrown Christian’s way, his natural inclination is to ‘lean toward happy’… its remarkable, really!” That stuck with Christians Mom and has been a huge piece of her grieving. When things get tough, she remembers Christian’s resiliency and leans toward happy.

We NEED a cure for Melanoma. No family should endure what either of these boys families have, whether it’s in the form of loss, or prevention.

I was talking with one of Dylan’s parents today and I felt silly for my worry surrounding Mermaid’s nevus. She gently reminded me that we are all on a different journey, and she is right. We all have struggles and concerns valid to our lives. Some bigger than others, but in no way, shape or form, does it make any of them less.

As I’m sure you can imagine, with surgery comes cost and time off of work for his family. He has an amazing family that has done everything they can, and will continue to do everything they can to ensure his wellbeing. Right now, it’s our turn to help ease their burden, just as they have done for Dylan his entire life.

Dylan’s family has put together a fundraiser where they are selling water bottles and shirts to raise money to help offset some of the cost following surgery. You can donate or order using the link below.

http://fnd.us/01ASMb

I know we can’t always give by way of money and sometimes the biggest gift is that of prayer. So as October rolls around, keep this little slugger in your thoughts, give the family some encouraging words and tell them Mommy’s Mermaid sent you!

You can read about the specifics or follow Dylan’s story on his own personal facebook page at:

https://www.facebook.com/DylansAmazingJourney

To follow Christian’s mom on her path of recovery and learn more about his short but meaningful journey you can go to:

https://www.facebook.com/ChristiansSpecialSpots/?fref=ts

To Dylan, you are stronger than most people I know, you will heal and once again amaze us all. I have no doubt that Christian will be by your side through your entire process. You will be back on the ball field before you know it, and think of it this way, while your home healing, you can enjoy the world series! You will be in our thoughts and prayers before, during and after your surgery.

Tanya, Kara and Nikki – your strength is far from unnoticed. To Tanya and Kara, I want to thank you for trusting me with you stories, emotions and lives. I think I will forever remember to “lean towards happy” when I am having a rough one.

“Our wounds are often the openings into the best and most beautiful part of us.”
― David Richo

Thanks for walking with us today,

Mermaid’s Mommy

A threenager’s thoughts…

Sep13

Most days our lives mimic other people’s with a toddler, trying of our patience, astonished by the next big accomplishment, mortified by the new sentence or phrase they picked up, tiring as we fight sleep, attitudes, messes and defiance, and quite possibly the most beautiful experience we will ever have. I find myself constantly in awe of what my little being is teaching me and often forget what life was like before she was here. I joke that I want quiet and moments of solace but when I get them, I feel partially empty. I have learned that the pure chaos she brings me, is just what I always wanted.

Then there are times when I am reminded that unlike other people’s lives with a toddler, our journey is slightly different. Where her disease in no way, shape or form prohibits her from anything in life, it occasionally rears its ugly head and forces us to face it dead on. Sometimes that’s in the form of an appointment or treatment, but tonight, it was in the form of words.

As we were finishing bath time I asked her to lift her arm so I could use our special soap on her scales and very matter of fact she said “My scales are disgusting.” First of all, disgusting? Big word for a little girl. Second of all, how, why, where would she have heard something like that? but lastly, ouch. That hurt Mommy to hear. I replied just as matter of fact by saying “No they’re not, your scales are beautiful.” To which she replied “Thank you Mommy, but they’re disgusting.”

I opted not to argue or acknowledge her second statement and just moved on. I told Daddy what she said and he frowned. It seems harmless but it’s so far from that. My two biggest fears are of course, cancer, be it in the form of a wilm’s tumor or melanoma and her being embarrassed or uncomfortable in her own skin. Were blessed that for the most part, her nevus is hidden beneath her clothes and the ones that aren’t are hard to spot with the naked eye unless you know it’s there or are looking, so to this point we have had very little interaction with the public making much of a fuss. So where did she get this idea? Yes, she is three and they come up with the craziest things, half the time she doesn’t even really know what she is saying, but she was so matter of fact about it.

I think back to our first days after being diagnosed and how plagued I was by the thought of this very scenario. That one day, I knew she would resent her disease. That one day I would be trying to reassure she was beautiful even with a few blemishes, but not at THREE. My hope is that by not engaging in it, telling her I love them and moving on it gets out of her head, that she sees I don’t fuss about it.

As her Mom it completely ruins me inside. There are so many other things life she will have to overcome, things she will have to give all her attention to overcome that I never want this to be one of them, though I know that is only wishful thinking. It’s hard enough as a woman to live up to what society thinks we “should be” that I fear the additional hurdles she will face as her nevus continues to spread. I suppose at some point it was bound to happen, I just wasn’t ready for that time to be now.

Her timing is odd considering right now, it looks the best it has in months. I think the cooler weather is limiting the irritation and amount of flare-ups we have had. She has complained maybe once recently that it was bothersome.

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So to all my parents out there, nevus or other skin conditions, what do you tell your little one’s when they say stuff like this? How do you address their remarks about themselves? I look forward to hearing your expert advice!

Thanks for walking with us tonight,

Mermaid’s Mommy

New adventures…

Sep5

This past week we said our farewells to our favorite Physician who has chosen to depart our health care organization and explore other options in this crazy thing we call life. Where selfishly we are sad, we are excited to see where his next adventure leads him. It feels like we have been saying a lot of goodbye’s lately but it’s not completely surprising. We are home. Most physician’s take jobs far from their roots and eventually life leads them back home. I have long thought that any decision that puts your family first, is never the wrong decision. Medicine is a tough world to be in, appointment times are getting shorter, enrollment increases, demands skyrocket and all the while we try to do what we can in the given time, but its never really enough time. It’s stressful to say the least. There are a million reasons one chooses to leave, we are just sifting through the emotions of seeing another fantastic person go.

I had to ask myself why I am so upset about his departure, yes – we have been with him for many years now and he has been with us since day one with Mermaid, but it’s not the length of the relationship that brings me down. I’m not one to feel overly impressed by a degree or status. knowledge is helpful, but even in the beginning he let us know he would be learning with us when it came to Mermaid and I respected that honesty. You can be the best scholar, have rotation experience beyond your coworkers, years under your belt, but is that all that matters? So what is it? It was a different relationship, I never felt like I was a number, he listened, understood where I was coming from and trusted my thoughts that weren’t always traditional. On our last visit he mentioned me wanting someone who would think outside of the box and he nailed it on the head. I have a daughter with an unconventional rare disease, with little to no treatment, it forces me to think outside of the box when it comes to treatment. With little knowledge in the medical world I lean on all of you along with extensive research to help guide us and he respected that.

I have spoke briefly about my rough pregnancy and struggles that followed after birth but not a lot of detail, saving that for a different avenue I’m working on, but he was there through what feels like the roughest 3 years of my life, physically and emotionally. When Bailey was diagnosed, I was heartbroken, when her specialist declined to perform a biopsy, he did it. It may have been a first on such a little one and he did amazing. When I needed a signature for one of our unconventional treatment ideas he signed it, and again to hold onto at our last visit for future use, despite recently being denied by someone covering because they felt uncomfortable with it. When I felt crazy after having Bailey and cried every single day from the pain I was in, he helped me through it. When my options ran out and it led to my hysterectomy, he was there for anything I needed leading up to it and after as we sift through the last leg of remaining symptoms. The thought that I have to start at ground zero with someone who won’t fully understand the level of despair and need we had been at is hard to swallow. Yes, I cried in our last visit.

We are nearly the same age and did lot of life events close together, marriage, kids… it gave us more to talk about than just “what can I do for you today” and I always appreciated that. No, I have never been one to be overly impressed by a degree or status, but I AM impressed with how someone treats you. We spent most of our last visit talking about life, where we hoped both our paths would lead in the coming years and it was bittersweet.

Mermaid was snapping pictures with her tablet as we talked, it was borderline creepy, but she was entertained and honestly, it’s probably my fault for taking pictures literally 24/7 so I couldn’t blame her. Now, I’m glad she did, where she really needs to work on her skills, I suppose this is how a 3 year old views her visit.

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Don’t get me wrong in reading this. We have an amazing support system. Immediate family, extended family, work family, friends, my amazing husband, we truly are blessed, but there are some things your support sytem can’t do for you. You know, like the medical side of things. To so many people reading this I know you understand what it means to find that right Physician, someone who you trust, in our case, someone who felt like a friend, I know you are keen to how important it is in our world, and when it goes away, we all feel a little lost.

To our favorite Physician, may you ever lay eyes on this… and don’t feel like I made it clear, Thank you. Thank you for being our rock, our advocate and always treating us like people. Whether you feel it or know it, you are an amazing Physician, as you know, I have been around a long time and I put you in that handful of exemplary people to walk into my Kaiser world. Whether you choose Medicine or a different road, keep that bedside manner. Continue to get to know people and truly show them you care. It will take you far.

To all our readers, so much of my knowledge never would have happened without that biopsy, it led us to a true diagnosis and the Yale study, without that signature we never could have shared the incredible results of our wartPEEL trial and without his helping hand I personally never could have gotten to the place I did to start this whole adventure. Wish us luck on our journey to find our next cohort on this wild ride.

Onward and upward to our next chapter.

Thanks for walking with us today,

Mermaid’s Mommy

Back to ground zero…

Aug19

Well, sadly… we are losing our Primary Physician. Those of you that have been with us from the get go know that he has been the one constant in supporting Mermaid’s care. When we fought with dermatology to have the biopsy done because they said it would be too “traumatic”, he gladly did it for us and she was a champion. In fact, everytime we went to see him there on after, she said she would let him have another mermaid scale if he wanted. When Yale wanted the biopsy sent to them, he put it into action without hesitation. When we needed physician approval for the wart-PEEL, he signed off on it and backed my decision to trial it, knowing it may be a bit controversial – and to date, it has been the best treatment we have had.

Though our early days left him perplexed and we were sent to Dermatology, we never quite stuck with anyone and he became our safety net for all our needs. It seems kind of silly to recognize just how upset I am about it when there is a huge pool of perfectly educated Physician’s to choose from but when someone has been there from the beginning, it’s hard to let go.

Some of you know, others don’t, but after Mermaid I got moderately ill. Enough that after 2 years of treatment a decision was made that I had to have a hysterectomy. When the decision no longer feels like you own it because there are no other options, you crumble a little bit. Throughout that process he has definitely seen me at my worst. Within a matter of a few short years I rode quite the emotional roller coaster between Mermaid and myself and through it all, he was with us, helping in every way he could. For the care he has provided I will forever be grateful.

While we sift through a period of limbo searching for our next permanent physician we may turn to all of you more than normal for help and direction. Luckily, we have all of you! So, with that being said… were looking for some advice!

Mermaid’s hand seems to be progressing again. I don’t want to use the peel on the surface of her hand due to potential scarring and pain but not only has it cracked and bled it’s now thickening. Aside from “moisturizing”- those of you that deal with the thickening aspect of it, what do you recommend and does anyone have experience with hand lesions specifically? It’s such a sensitive spot and I hate to cause any damage drawing additional attention.

Have any secrets you care to share?

Wish us luck!

Thanks for walking with us today!

Mermaid’s Mommy

Small gestures make big things happen!

Aug13

Over the past few weeks I have grown weary. Mermaids Nevus has spread and thickened down her arm. For the first time EVER it cracked on her hand and began to bleed. My heart sank. Like all of us Nevus parents, we worry… will it be painful? Itchy? How much more will it grow? Will people now start saying stuff about it? Will she be able to tell me if it’s bothering her? What can I do to FIX it? Though deep down inside, I know I can’t “fix” it.

The timing seemed impeccable that just as all of this was running through my head, we had our dermatology check up. More than a check up, we were once again, meeting a new Physician. From day one of questioning my little one’s first initial “spot” at less than 24 hours old, this marked our seventh physician to now play a role in her care. Some passed it off as nothing, others perplexed, one with which – we will just say – we didn’t “click”… and now another to lay eyes and insight into our world. I am always nervous about their responses to me, how they will treat all of us, what they will advise, will they be knowledgeable?

Well, I can only say this… best appointment to date. He spoke to the given they all do when we meet someone new – no cure, little treatment, managing symptoms but then hit on the piece I have been dreading. I have been told by two separate physician’s now that the location of Mermaid’s Nevus on her hand will most likely result in surgery. The target was school age. The thought of taking the risk to put her under and the pain she would endure following the procedure is hard to swallow, though I fully understand the downfall of not having it done. With each patch that grows I feel our days are numbered. Going into this visit I was prepared to hear the dreaded words. To my surprise it was the complete opposite. I showed him before and after pictures of the wart-PEEL treatment we did and the spot now cracking and he seemed both intrigued by the product, which he had never heard of being used for this, and impressed by the results. He felt that she was still in a state of manageable care.

We talked briefly about abnormalities and he felt it would be a reasonable time to have her eyes re-checked. For those of you asking recently about the ocular abnormalities, he did confirm that cataracts could develop at any time, it is not something that would necessarily arise in the youngest of age.

He noted that her skin tone works nicely to hide a lot of her nevus which made me laugh, supported our use of the controversial wart-PEEL that contains a cancer agent and said I was doing a good job. It didn’t hurt that he also complimented my own knowledge but what I appreciated most, was that he said he trusted me. He said we do not need to return for 1-2 years unless I have a concern and to keep doing what we have been doing. At that time we will re-asses the need for surgery.

It was short, to the point and felt amazing to leave knowing that as a family, we are doing all the right things.

Moving forward we will schedule another eye appointment with the specialist and continue to search the world for helpful products, and of course… share the outcome with you! Speaking of… seems like it’s time for a new trial!

With the new growth and being in swimsuits, dresses and tank tops over the summer I have wondered about more kids seeing it or asking about it and how she handles that. Picking her up from school one day last week one of her teachers shared a cute little story with me about Mermaid loving bumblebees. I said ya, her Dad taught her they are nice and she pets them at home and we have made some products for her skin with beeswax. She has said to me many times that the nice bees make honey for her scales and it’s adorable to hear her make that connection. Her teacher said she noticed her Nevus and asked Bailey what happened, her response? “Oh those are my Mermaid Scales” and just moved on.

It brought me comfort knowing that even when brought to her attention by someone, she is not ashamed nor phased nor hesitant to answer about her uniqueness. It made me feel proud to hear of her confidence.

It doesn’t matter what your differences are, be them seen by the naked eye or something internal, it’s how we handle what we were dealt. It took me a long time to get here, to feel confident both in my own understanding of her disease and making sure she knows it’s ok. I didn’t get here alone though, whenever I feel like we have a success, I feel like I owe thanks to those who helped it come about. My dear friend Aindrea who is across the country not only introduced me to the treatment for her hand and walked me through it but has remained at my side through this entire journey since our first encounter with one another(one day we will get to have the biggest hug ever) and to all my family, who have never treated her differently and encouraged my path of finding more knowledge. Last weekend I saw my Mom kiss Mermaid’s scales on her hand, letting her know she see’s them, but loves them. Of course, lastly, to each one of you reading this, whether it’s because you love my Mermaid and enjoy hearing about her journey or find yourself looking for answers and support through our path to relate in your own nevus world, we know you are here and appreciate you. It’s the small things that get us to big places.

Here’s to hoping we have many more successful months ahead of us!

To being confident and finding acceptance, we thank you all!

Thanks for walking with us today,

Mommy’s Mermaid

Mermaid’s Ashore!

Aug7

To most people, Portlandia is just a quirky show poking at the oddities of Portland, Oregon. I have to admit, “put a bird on it” and “the dream of the 90’s is alive in Portland” are genius and crack me up every time I see them but most of it is beyond me. We live in a small town East of the city and trips there are rare.

Where I may not frequent Portland these days, being born and raised in this great state I am very aware of who “Portlandia” really is. In the midst of downtown in a rather modest location sits the second largest hammered copper statue in the United States, right behind the Statue of Liberty. At 34 feet 10 inches tall a woman holding a trident reaches down to the people below her. Portlandia was modeled after the city’s seal which also boasts a woman holding a trident.

The trident is known to be the weapon of Poseidon, the God of the seas, and Neptune, the God of freshwater and the sea. As a city that was once known to be the number one place in the western hemisphere for “crimping” and “shanghaiing” amongst the sea captains and sailors, a city that’s known for it’s beautiful bridges spanning the river, a city that boasts the amazing dragon boat races, has a waterfront walkway that hosts festivals – bike riders – walkers – runners – fountains and those just gazing at it’s beauty and a city who’s access to the water make it an easy port for transportation of goods; once known as one of the most dangerous ports in the world; it seems only fitting that it has a protector in Portlandia watching over the city.

With so much action on the water it was only a matter of time before it hosted it’s own Mermaid parade. On July 30th Una the Mermaid & the travelling Fanta-Sea Cove organized Portlandia’s first annual Mermaid Parade.

Those familiar with us can only imagine the excitement in my household upon hearing this news, those new to us, let me explain.

My beautiful daughter was born with a rare genetic skin disease called Linear Epidermal Nevus. It’s complicated, it comes with a laundry list of potential complications including skeletal, ocular and nervous system abnormalities. Has the potential to cause both benign and malignant tumors, raises the risk of melanoma, and in our case, may potentially take over the entire left side of her body. At first we were devastated, plagued by the “what if’s” and lost due to the lack of information and medical knowledge surrounding her disease. Over time we found some support groups and started this blog to share our journey and connect with the world to both learn from them, and share what we know. It’s hard to explain to a child what’s slowly growing on their body, we joked that her “scales” were from her previous life as a fish. A friend said to us, can’t you find something better? Like a Mermaid? and it stuck. From that moment on she became Mommy’s Mermaid. As she has gotten older she has told strangers, doctors, friends and family about her Mermaid scales, she whole-heartedly believes that they were a gift from a Mermaid. She believes they are a special and wears them proudly.

An opportunity to take her somewhere full of Mermaid’s, those magical creatures that shared their beauty with her, to walk amongst them and relate, could not be passed up. I had no idea what to expect, I thought it would be small, generic, cute but nothing to write home about. I could not have been more wrong. I know now, that I need to start preparing for next years event! Mermaid could barely contain herself as we got ready, Mama are we leaving yet? Mama, are we ready? Mama, can we pleeeeaaaaasssseee go now. As if she knew just how special it was going to be.

We were blessed to have a friend and her little one in tow with us, with the girls in wagons we headed to the historical waterfront, the friendship circle to be exact. The friendship circle celebrates the sister city relationship between Portland and Sapporo, Japan. The Friendship Circle includes a pair of 20-foot stainless towers that generate electronic tones. I can only describe it as nothing shy of magical. Men, Women and children of all shapes, sizes, and ethnicity filled the gorgeous backdrop of Portland in full costume. There were people giving out gifts, bubbles, shells, dancers, birds, artists and even a man fishing for Mermaids with a cat on his line.

We flipped down waterfront passed Saturday Market and the Brewfest. People lined the path taking pictures, videos and cheered. After the parade we took some time to enjoy the city and played in the fountains!

We get caught up in the daily grind, I often forget to take moments to stop and truly let myself enjoy the beauty of imagination. Mermaid’s disease will be with us forever, there is no cure, very little relief for symptoms, and at this time – minimal research or trials to move in a forward direction. If allowing my 3 year-old to believe that she was gifted her scales by a Mermaid gives her even one small ounce of happiness in this journey, I will believe it too.

To the amazing group that made this dream a reality, to every single person that came to celebrate and to our honorary Mermaid’s Geneva and Charlee for walking this path with us, I thank you all. This parade meant so much to us. As magical as I saw it, I can only imagine what my little girls thoughts were.

There are no words to describe the beauty and creativity that was bestowed upon us that day but thanks to the talented Christelle Morgan who has graciously allowed me to share some of her work, you can enjoy some of the sites from our day. Enjoy!

You can find more information about the wonderful Christelle and her work at:

cmphoto.smugmug.com

facebook.com/photographybychristelle

To learn more about Una the Mermaid you can visit her site at:

http://www.unathemermaid.com

Thanks for walking with us today,

Mermaid’s Mommy

Eye see you…

Jul28

Let’s talk about the connection between Epidermal Nevus and ocular abnormalities. Right out of the gate I want to clarify that a diagnosis of Epidermal Nevus in any form without one or more of the potential abnormalities is the disease itself. To be classified as having the syndrome you must have additional abnormalities. Additionally, there are different types of syndromes depending on what form of epidermal nevus one has and what abnormalities are present. This has caused a lot of confusion and controversy in the medical world. I see the term used interchangeably all the time, causing additional anxiety but have clarified with multiple physicians that the absence of any abnormalities does not classify as the syndrome. I for one, am the first person to recognize that the diagnosis itself carries enough anxiety provoking elements and issues without any abnormalities that making sure I understood the difference was vital.

It is also important to remember that the sydromes are rare and chances increase with wide spread lesions.

Ocular abnormalities may include Colobomas of the pupil, iris or eyelid and Cataracts.

A coloboma is a hole in one of the structures of the eye, such as the iris, retina, choroid, or optic disc. The hole is present from birth and can be caused when a gap called the choroid fissure, which is present during early stages of prenatal development, fails to close up completely before a child is born.

Colobomas are sometimes referred to as keyholes due to their shape. They can effect one or both eyes.

coloboma

There can also be an association with colobomas of the eyelid. This would be the result of incomplete cell migration and present at birth.

Coloboma-243px

A cataract is a clouding of the lens of the eye that can make it harder for you to see. Cataracts happen when protein builds up in the lens of your eye, making it cloudy. This prevents light from passing clearly through the lens, causing some loss of vision. There are many causes including, age related, from trauma, congenital – meaning born with it, or secondary – which can be due to other medical conditions.

cataract

I have searched and searched and cannot seem to find a solid answer to whether or not cataracts would be present at birth only or can develop at a later age but I have an upcoming appointment and will be sure to ask.

Oregon Health and Science University told us that it is recommended to have eyes of nevus owners checked by age one. Where some of the abnormalities would be obvious to the naked eye, others are not.

I downloaded a pediatric neurology book that speaks in more detail about the syndromes and hope to find more valuable information to share soon.

To all our new followers and newly diagnosed nevus owners we hope you find this useful!

Thanks for walking with us today,

Mermaid’s Mommy

Mommy's Mermaid

Our Journey

Tag Archive | ILVEN

Fish out of water…

MollyMadison making smiles!

From hiding to Hollywood!

Lean toward happy…

A threenager’s thoughts…

New adventures…

Back to ground zero…

Small gestures make big things happen!

Mermaid’s Ashore!

Eye see you…