We went to the GRAND CAYMAN, Costa Maya, Mexico, Cozumel, Mexico, and the Disney Island, Castaway Cay!

Here are some of my photos:

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Here they are:

1. To visit the Hillsong Kids church in Sydney, Australia.

2. To go to the top of the eiffel tower, in Paris.

3. To go to Scotland and not have to worry about the sun.

4. To go to London and see Princess Kate at her Castle

Today we have to help her decide which is her #1, because Allan told us that they try really hard to make the #1 happen.

She got a very special Make-A-Wish Barbie doll, and she hasn’t stopped playing with it.

Can’t wait to see the wish unfold!

Click on the first image to be able to click through them all…

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If you happened upon this photodocumentary because you or your child are newly diagnosed, please know you are not alone!
Go here for a great community of others like you!: CureJM Website or JM moms (caregivers) Facebook page

OUR STORY:
I don’t have a whole lot of time to write this morning so I am going to be very brief:

Here’s one main thing we do to prepare for Cold and Flu Season:
Medical grade, THIEVES essential oil blend.

We use it as an anti-bacterial rub, we use it as a preventative (when we feel we are fighting something, or if (something is coming on), or if we have been exposed to sick people, or if we know we are going somewhere where germs abound (such as a nursery or an airport or a classroom)- We diffuse it at home (for the children), we brush our teeth with it (for ultimate viral protection) AMAZING STUFF.

I first learned about it when my daughter’s teacher started diffusing it in their Pre-K classroom last year because so  many kids were getting sick during Cold and Flu season. Once she started diffusing- NO ONE WENT HOME SICK!!!

Then when my daughter was diagnosed with a life-threatening disease and was left Immuno-Compromised- I began inquiring about safe, healthy, effective ways we could protect her from catching (everything)! (By  the WAY, she’s miraculously and rapidly already WELL, much to the amazement of her doctors)!

Also my son Rio’s eye (with the prosthetic) gets really goopy this time of year bc of Cold and Flu season and bc of allergies- Used to, we would only go to opthalm. and get prescribed anti-biotic drops- which sometimes worked, sometimes didn’t: I was looking for a more natural and effective alternative and I have to say, it works better than the anti-biotic eye drops- Here’s what I do:
When I see his eye getting goopy, I roll a little of this essential oil blend on the bottom of his feet, and within a day or two the goopies are GONE! Totally effective and it also helps combat any other things his little body may be fighting off.

We have been doing this (along with improved diet and some supplements) since January 2011 or so, and I can honestly say that my kids and I HAVE NOT BEEN SICK SINCE!!!

There’s really no harm in giving Thieves a try- It is 100% pure, natural, and will actually build you and your family up in a POWERFUL way! This stuff is naturally anti-viral (Which anti-biotics are NOT), anti-fungal, anti-bacterial, anti- (everything!)

The ultimate for me was when I was coming down with a cold sore about a month ago, and I remembered my ThIEVES, and I put some directly on the “tingle” on my lip- and again for the next few days- THE COLD SORE NEVER MANIFESTED- It went away quietly without ever growing into that painful itchy ugly mass that it normally does.

I mean, if it protected people from catching the plague that took out half the planet, it is worth a shot, right?

If you want to give Thieves a try, LET ME KNOW by contacting me at the link on the above menu. I can help get you set up!

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be,” – Joan Ryan, “The Water Giver

Wow.

“I have been waiting for the right moment to talk about this on here, because I know everyone has such strong opinions, and here I humbly offer mine.

But, let me begin by saying this: I insisted that my two doctors who had very different opinions communicate and work together because I am such a firm believer in the body’s ability to heal itself when given the right things it needs. I know that may sound weird to some, but to me, it is as common sense as it gets.  And I am NOT (even though my name may sound that way-lol-) some free-spirited tree-hugging hippy. I am a mom, with 2 extraordinary children each with extra-ordinary conditions, which necessitated me to rise to the status of extra-ordinary.

That being said, we have not put all of our eggs in one basket so-to-speak (with steroids, IVIG etc), because the statistics on conventional medicine is just as scary, when you research it. So, we also looked into, and have been treating Vivia (right alongside the conventional stuff) with many different natural methods as well- which also has studies, and research, and scientific evidence to back it up. I created and am managing our own Integrative Path, if you will, bc my integrative doc whom we now/also see on a regular basis, had never treated this specifically, although he had treated it in a few adults, and successfully gotten them into remission without ONE drop of Prednisone. So, I had them talk to each other, and she (our rheumy) is very open to the additions that I insist upon, and whether she was skeptical or not, she can’t argue when she looks at Vivia’s progress month after month now- RAPID progress.

THAT BEING SAID: When first dx: Vivia was at the height of flare! Rashes all over her face for YEARS, papules on her fingers and toes FOR YEARS, weak and lethargic. We were told by rheumy it would be at least 2 years before her pred was tapered, and to expect a 2 year (at least) road to remission. Here we are, 6 months in, and she is doing remarkable. Her blood levels were back to normal after three months of our natural regimen, then ONE IVIG infusion (3 months in). Even my rheumy has to agree that her healing is happening fast. And her strength is amazingly increased. Some may say here “well, she obviously didn’t have it that bad” but that would diminish the amazing recovery we are witnessing, and diminish all the hard work she, and we have put in place to create an environment conducive for her body to balance her immune system. We are not doing any weird voodoo, or heebeejeebee stuff, just integrating several all-natural things into her meds regimen.

I know every child is different, therefore treatment is not a formula- but I believe with all my heart that there are other options, not just one. And through the exploration and research we have done, and utilized- my daughter is herself again, in only 6 months. We are still tapering her off the ‘roids, being anally vigilant about her sun exposure, and are proceeding carefully with the rheumy’s guidance and blessing. And I am not saying it was ONLY the natural stuff that worked, but I am saying in our case, it was/is the COMBINATION that is achieving this.

I have found through this journey that there seems to be this “Great Divide” between what we in the US call “Conventional” medicine, and “Natural” medicine which is an integral part of medicine almost everywhere else in the world. So, to answer your question, I do believe that there are other options to going back on steroids, but I am not a doctor, and if you feel that his current condition is at “emergency” level, then you may want to consider it, to get the “emergency” back under control. Then sustain with natural lifestyle changes to support long-term remission, because there are many things that our kids (and us) have to endure, and are told are “normal” in this modern world that could be sending their little immune systems into overdrive.

I’d be happy to talk with anyone offline about our personal regimen, and what revelation I have had through our journey. And also to share specifics that we have worked with our natural MD pediatrician, and specialist to achieve her current and ongoing victory over this nasty condition. I even hesitate before hitting “send” bc I so do not want to be taken the wrong way. I believe every family must deal with this in their own way. But I wanted to be a voice for “options.” Again, in humility, just sharing my experience. ”

Let me add here now, that this road of questioning, educating myself, researching, and really just plain believing sometimes is the road less traveled. It has been really hard feeling like I would/could potentially be harming my child if I was “wrong”. But I don’ t know how else to explain it other than I JUST KNEW this was/is what’s best for her.  I do believe I have also had some major divine direction given which has fueled my ability to break “standard procedure”, and  several integral people were placed in my life, and already were in my life to guide me towards building the strength to follow through with it.

Here’s what I saw…

I call it: Vivia’s Wheels Of Healing.  This first wheel represents her at the center, and this intruder called JDM. Now, through much research I found that JDM, as other autoimmune diseases, are caused by several things that all have to be present, all at the same time, to begin to “manifest”, which is really just the point at which her body begins to breakdown in its ability to heal itself, the way it was designed to.  A “perfect storm” if you will.

Then, I saw this:

It showed me her healing and different components (things we could actually DO) to heal or manage each individual area that was leading to that “perfect storm.”

Most people, except extreme atheists, believe we are triune beings, made up of 3 parts: Spirit, Soul, and Body. And I believe Autoimmune Diseases include and attack elements from all 3. So, peeling the layers and seeing what needed to be healed and fixed, and what to do to manage it, or correct it, so that my daughter has as much possibility for success- was a necessity for me.

Again, there are other things on this wheel, such as another spoke entitled “Emergency Management” which did/does include: conventional medicine (but I only view it in a very “ER” fashion. To be done long enough to get the emergency under control, and no longer. Another “spoke” on the wheel was/is swimming falling under the “body” category. She regularly swims either at indoor pools or in the evenings in the shade. I had this crazy thought, “What if she became an olympic swimmer, in the face of this condition where she shouldn’t be outside in the sun, and shouldn’t be strong enough?”  I can tell you one thing… SHE ABSOLUTELY COULD if she wanted to!

SO, WHAT ARE WE DOING, THAT ANYONE COULD DO?

We got back to the basics. What are the fundamental things that we should do, be doing, or should’ve done to create a firm foundation for even a healthy body, much less a diseased one?

1. BARE-BONES, EVERY ONE SHOULD BE DOING THIS: A STRONG PRO-BIOTIC (We do the Garden Of Life brand, RAW Probiotics WOMEN (not child strength) bc of the severity of her  condition). See them HERE. You can also view the brief informational video that describes the product. (Doctor recommended to us.)

2. BARE-BONES again, Making sure Vivia has her necessary daily needs of fruits and veggies. How did I do this with a very picky 5 year-old eater?  JUICE PLUS. Awesome awesome product that gives me peace of mind. My kids eat 4 gummies a day. 2 fruit, and 2 veggie. This, plus my food that I prepare for them, ensures that they are getting what they need. I took the cost of this right out of my FOOD BUDGET, because I knew we’d be getting way more bang for our buck here compared to wasting loads of money on foods devoid of any nutritional value of punch. READ ABOUT JUICE PLUS here. (Pediatrician recommended to us after dx.)

3. Ninxia Red Wolfberry: UNBELIEVABLE. THIS IS A KEY, so don’t let me lose you…If I didn’t just see the difference this stuff makes with my own eyes, I would be completely skeptical- And I WAS, at first! Everyone in the conventional medical field tells us that with autoimmune conditions, you have to be careful of stimulating the immune system. Autoimmune conditions appear when an Immune System is Confused, and Overactive. It doesn’t know who are it’s friends and who are it’s enemies, so, it just attacks them all. Therefore, when several different people in my life approached me about trying this, I was like, “NOPE, too much vitamin C!” I was afraid it would have the adverse affect on Vivia, and cause her to flare all the more.

Something I have grown to realize is that there is a see-saw happening inside the body where, when it is too enflamed, it sets off a chain reaction which leads to, eventually “flare”. Figuring out what contributing factors are  leading your particular body to become inflamed, is a huge key to your success in personal health. W/ an autoimmune person who has a confused immune system- friends of the body, such as Vitamin C- are translated as “enemies” instead and can cause inflammation when it shouldn’t, normally. Even though the testimonies I was reading of people being cured of things as serious as cancer and other chronic conditions when taking this, again, I had that nagging argument in the back of my head- “But what about the vitamin c boosting effect?” As we know, we can’t have that, right? or maybe not…

SO, all that to say, is this: I dug and uncovered the studies that were done in China SPECIFICALLY ON AUTOIMMUNE PATIENTS. Basically, This Wolfberry has the highest antioxidant level on the PLANET. It is so high- (meaning it is so ANTI-INFLAMMATORY, it actually bears the ability to REDUCE inflammation in the body with only small amounts). That accomplishes two things at once: BALANCE of the immune system, and REDUCTION of current issues/symptoms caused by inflammation- (which causes the imbalance, and the vicious cycle goes on).  In other words: 1. Take arrest the offender, and 2. Restore balance in the galaxy.   UNREAL!  As soon as I read that, I had the confidence to give it a try. Or for Vivia to give it a try, rather.

She’s been on it for 3 months now, regularly, and we have seen miraculous results. HER STRENGTH IS BACK FULL FORCE. HER ENERGY IS BACK FULL FORCE. HER ARTHRITIS IS GONE. HER SKIN INFLAMMATION is COMPLETELY GONE (rash). WE HAVE BEEN GIVEN THE GREEN LIGHT TO BEGIN THE TAPERING PROCESS. IT HAS HELPED SUPPORT AND MAINTAIN her blood levels at “normal”. I could go on and on.

You can read some more about it HERE, and here;  and if you want to try some: CONTACT ME (at the top of the page, click “CONTACT: , I’ll hook you up. That’s how much I believe in this stuff. One bottle goes a LONG LONG way.

4. We went “non-processed” with our diet. Basically switched from dead foods to living foods. But that’s a whole ‘nother post.

5. Essential Oils: “Our Missing Link”. SO much to say here, but it’s 2 am.  Will come back and share this HUGE piece of our puzzle. But in the meantime, feel free to get a sneak-peek here: But keep one thing in mind: Amazing Science to back this stuff up! But that’s for later…

Nite Nite…

I loved our Monday morning riddles. The bell would ring, and he would start off the week with this ridiculously hard riddle, and we had all week to ask questions and to try and figure it out.  We were only allowed to ask “yes” or “no” questions. I still remember some of them. I loved our early morning music sessions. He would let us listen to music before the bell rang as we were getting ready for class to start. His was the first CD player I had ever seen! He would let us listen to current music (at the time). His favorite that year was George Michael- and we convinced him to let us listen to the “I want your sex” song bc we told him that it was about a married couple!  We thought we were so cool!

I remember countless hours of filling in graph paper with my initials bc I got in trouble for talking too much, I remember analogies, and creative writing, and poetry. The world Mr. Yesue introduced us to was much much bigger than the tiny town of Shirley.

Mr Yesue was more than a teacher to me, he also was like a father. He wiped away more than one tear from this pre-adolescent’s cheek.

He represented safety and security, and consistency to me during that year I was in his homeroom, which was one where I went through a very difficult ordeal in my life at home.   I came to him and told him all about it, and his words to me at the time were so full of encouragement, and life, and love, and hope. I can say with all certainty that he was a rock to me during that time. A gift from God.

I moved away to another state after my eighth grade year, and my life changed dramatically. Fast-forward to 2003, I traveled back up North, a married woman, and just HAD to go visit Lura A White, specifically Mr. Yesue. I wanted my husband to meet the man I credited as one of the most influential people in my life, to date.

Nostalgia immediately set in as we turned down the street. How many millions of times had I turned down that street? And walked in that front door of the school, and walked down that  main hallway? And peeked in that window in the door? I had a surreal experience at that moment because, there I was again, a 12 or 13 year old girl, smelling the musty odor of the ancient building, about to open that antique door to enter the classroom. Almost on cue, Mr Tellier was there, leaning over Mr. Yesue’s desk pointing at something, and they were laughing about (whatever it was). BUT THEY WERE OLD. And GREY. And frail-er. I fought back tears in that second. It was almost like when you’re watching a movie, and in a 60 second montage, the main characters age by 20 years so the story can progress quickly.

Of course Mr Yesue and Mr. Tellier immediately remembered me, embraced me, and introduced me to the entire class. When he found out what my husband did for a living he, in true Mr. Yesue style, wanted to make that a teachable moment- so he grabbed (whatever boy in his class wanted to do what my husband did), and sent them out in the hallway to have an impromptu Q and A session.  He also asked me if I remembered “Timmy”, which of course, I did. He then told me “Timmy” was down the hall teaching, and I had to go mess with him. Always a prankster, always full of fun. I’m so glad we took the time to go spend those few moments with him, because it was a dream of mine, ever since I moved away. A small part of me wanted his approval, and his “thumbs up” of what I had made of myself and my life.

The world certainly was a better place with him in it, and his legacy lives on in each of his students. We were his opus. We were his “Dead Poets Society”, and he will always hold a special place in my memory.

The angels rejoice as we weep. You will be missed. Sleep well, sweet friend. Until we meet again.

I am a better person, having had known you. Thank  you for all you were, and thank you also to Mrs. Yesue for sharing him with us. I know that without you, he wouldn’t be who he was.

Now, I must go back and check and re-check my post, because this is for Mr. Yesue, after all. And anything less than my best is just not “Outstanding.”

Thanks to whoever supplied these photos, bc I don’t have any of him…    If you’d like to read more about him, and the people who’s life he touched, go HERE: http://www.facebook.com/pages/Remembering-Al-Yesue/131581900258858

JDM rash at it's worst

So many of our friends and family have offered to help and asked how, and I thank you all so much. With much thought and consideration and (humility) I  have put together this list of things I have thought of.

First of all: Please join us in prayer for believing for these specific things for Vivia. And

Second, if any of you have any of these things you could gift her/us, or

Third, feel so inclined as to join us in helping us bear the financial burden (especially the ongoing medical necessities) please feel free to do so.

If you don’t live locally, Email me at freedomg12(at)gmail.com and I will email you our address, (Don’t want to post it online).

We are currently setting up a special needs Medical Trust for our family (including Rio’s ongoing special needs as well) so we can receive the help that so many of you have offered. We also welcome ideas! So, please share them.

Vivia’s Wish List:

1. Beads and beadmaking supplies that she can make all kinds of necklaces and bracelets out of. This is important bc it helps keep her fingers nimble as JDM can cause arthritis. She is making them to support the @GLOBALGENESPROJECT, 7000 bracelets for hope campaign, to send to children with rare genetic diseases, such as JDM.
2. Coloring books and/or coloring pages to pass the time while at the hospital, and long days indoors at home. Coloring is very theraputic for her, and she goes through a coloring book a week! (Thanks to Christine Aubrey, Tonie Sophia, and Mrs. Labrador and Miranda for already having brought goodies like this!)
3. Any kind of travel-friendly art project that we can take to the hospital with us.
4. A personal gamer thinggie (I don’t even know what they are called but like, a nintendo thing, or ???) again, to pass time during infusions.
5. An Ipad for “face time” with Papi, Mami, Bella, Nona, Baby Brother Rio or whoever else stayed home during hospital stays. (Gainesville is a long drive, so visits from family and friends is difficult). Also for the games and the books, music and the homeschooling etc.
6. A pass to indoor play places, since she can’t play outside for long periods of time. Like, Monkey Joes, Amaya Papaya’s, Orlando Science Museum or whatever.
7. A pass to Sea World: (She keeps begging to go, but we can’t do full days all at once. Would need to be able to come and go. Hey, I think Marine Life is therapeutic too!
8. A penny whistle, yes, you heard me- she wants to learn to play this.
9. A piano/keyboard- She’s also learning to play this and I think is a brilliant thing to focus her indoor time on.
10. An indoor mini trampoline (received, thanks to the Randles!) For indoor exercise.

Medical Needs List:

1. A special needs stroller for our excursions. She tires easily and needs breaks when on long trips out of the house.  She has outgrown normal, baby sized strollers.
2. Rash-Guard style long and short sleeved shirts with UV protection.
3. Cool sun hats
4. SunScreen- we are always having to buy more and more of this- not covered by insurance
5. Ongoing supplements- not covered by insurance (too many to be listed)
6. Ongoing Medicines (too many to be listed)
7. Chiropractor Visits for nerve and spinal healing
8. Swim Class (water therapy)
9. Therapeutic Essential Oils (healing and reversing of cell damage)
10. Visits to Dr. Colbert who doesn’t take insurance
11. Since she was dx, we have also had to go on a very specialised diet which includes organic and gluten-free products which has increased our grocery budget by double. This is medically necessary at this time and of course, not covered by insurance.
12. Lawyers/accountants fees to set up Trust

Vivia has shown dramatic improvements in the past few months, but she is not in the clear just yet. She is still in the thick of it right now, and we continue to believe for her complete healing. As it is now, this course of therapy has been working! And we will stay the course until it’s results are realized.