Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.

Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 40 to 90 seconds.

Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.

Our beautiful girl

Our beautiful girl

As a parent to a severely autistic child who has daily uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey. Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success because I never introduced the homemade yogurt, which is the main healing modality. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.

I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.

This blog is really about our journey over the last 15 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives.

Hebrews 11:1 -

Now faith is confidence in what we hope for and assurance about what we do not see.

Have a question or comment for me?

If you have a question or comment for me feel free to leave it under the "comments" section on the bottom of each individual post. If you would like to leave a private comment you can email me at kellynjohnson94@gmail.com.

Friday, February 23, 2018

Repentance - For the Race Set Before Us.

Hey, there :) - it's me again.

Been thinking. It's hard not to while sitting in this small room, day after day, week after week.

What is my role in this long, overstayed visit? Trying to look inward..... I'm crabby for sure. I was thinking about that several days ago during the daily "huddle" with Olivia's "doctor team of the week". Frustrated to say the least......I think anyone would be. Angry. Questioning what the heck is going on with these fevers. Is there sin tripping me up? What is this race I'm running?

Do you ever just get so worked up about a situation and you know darn well you have absolutely no control over it? Where the answers are slow, and the future appears questionable? Each morning, for the last 5 weeks, I wake up on this pullout futon searching for a way out of this place. What's the answer?

You know me. Even though I'm not talented enough to sing worth a darn, listening to music....especially praise and worship music gets me thinking. It's like these songs minister to my questioning spirit and point me to an area of my life that needs a little mending....in this case, repenting. Today, I heard Switchfoot's amazing song "I Won't Let You Go"

Seriously.....take a gander at a couple of these lyrics:

When it feels like surgery...And it burns like third-degree...And you wonder what is it worth?
When your insides breaking in..And you feel that ache again..And you wonder..What's giving birth?

If you could let the pain of the past go...Of your soul...None of this is in your control
If you could only let your guard down...You could learn to trust me somehow
I swear, that I won't let you go

If you could only let go your doubts...If you could just believe in me now
I swear, that I won't let you go

When your fear is currency...And you feel that urgency
You want peace but there's war in your head

Maybe that's where life is born...When our façades are torn
Pain gives birth to the promise ahead

There ain't no darkness strong enough that could tear you out from my heart
There ain't no strength that's strong enough that could tear this love apart
Never gonna let you go

These words! They so easily confirm the scripture that stopped me in my tracks today:

The Lord isn’t really being slow about his promise, as some people think. No, he is being patient for your sake. He does not want anyone to be destroyed but wants everyone to repent. 2 Peter 3:9

We all have those pangs of unforgiveness that we can't let go of. Honestly, if you really think about it. For me, I guess I realized in the last couple weeks how incredibly mad I have been towards the medical community in general. Seventeen years is a long time to carry the hurt, anger and bottled up bitterness that stems from what was stolen from me. Maybe I'm the one that needed the surgery here. A deep incision into my broken heart to remove this infective root of anger and bitterness. Maybe this would rid me of my own fevers of contempt, sarcasm, and victimhood.

It's funny, but to those on the outside, that seems so logical. It is logical if you've never walked in my shoes or the shoes of a parent who witnessed and reported the same dreaded fate for their child. People can see the logic of me extending forgiveness to a highly praised community even while their own personal life reeks of held on offense and hurt that may have happened years ago. No condemnation here, just putting in perspective where I am coming from.

What if your growth depended on forgiving someone while being in the uncomfortable position of having to completely depend on them at the same time? That concept is not so far-fetched. In fact, I think of the many people I know who grew up with an abusive parent, and as a child, they obviously had no recourse.  It seems crazy that I am in this position, or is it? Relying on a system that is responsible for screwing up her system so terribly that she is incapable, really, to break down medications that she needs to get better. Can't get any more stuck than that.

This is hard to hear.....I know. We all want to believe the fairytale concept of the "First Do No Harm" motto. In fact, this was recited to me by one of the docs on her rounds when I wanted to use a simple supplement. I won't languish in his embarrassment when he later had to diagnose her with a reaction from a medicine given to her here as the culprit of these fevers. I did not know that according to the FDA, drug Adverse Drug Reactions (ADR) are the 4th leading cause of death in the US.

Truth is hard to hear sometimes....and for me, learning how the Truth of how truly destructive unforgiveness is to our souls and our walk with God was life-changing. Over 17 years I have been pruning and repenting all sorts of unforgiveness. I guess you could say I saved the best for last. The one that seemed to act as a messed up security blanket. Can anyone relate? When we first checked in here I was deep in resentment. Watching her suffer in their midst is like pulling a scab off a 17-year old wound that has never healed. Truth is that my own free will allowed that sore to remain scabby and ready to be triggered.....even by accident. Positioned perfectly for the next ripping off ceremony. Does that make sense?

Sometimes difficult situations force you to look to other avenues of relief, especially after several weeks. Tearfully repenting this bitterness was the most freeing thing I've done in the last month. It was interesting, but for the first time, I was truly able to look past her injury and the perpetrators who destroyed my beautiful girl's life. I finally let my guard down and it granted me the privilege to take the time to truly gaze into the eyes of the hospitalists that are taking care of her. It revealed a much different picture then I had been imagining in my head. Once free, I witnessed the glossed over tears forming in their eyes.....the sound of a choked up professional assessment and the countless confessions of being up all night, "thinking about Olivia", researching possible diagnosis's to explain Olivia's extreme uncomfortableness and crazy high fevers. It reminded me that "our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms." Ephesians 6:12

Now that's freedom.  All it required was an obedience to His Truth. We can all look at all the terrible things that have been done to us and hold onto it ---- it's your right. But when I took to heart my role in transforming that hurt into sin I can see why I've been stumbling and tripping up in this "race set before me." I want His endurance, not my own.

I was thinking about it last night. This really free's my soul to continue writing about our journey with vaccine injury. I can report the truth I've learned and hopefully provide a different avenue of emotional freedom to other parents who may be just like me. It seems odd in the flesh, but true submission to the highest Judge is the most powerful thing for life renewal and recovery.

The last couple verses of this song scream an important Truth ---- He's never going to let you go. No darkness is strong enough.

 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:

“For your sake, we face death all day long;
    we are considered as sheep to be slaughtered."

No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.  Romans 8:35-39


Monday, February 19, 2018

Faithfully Waiting for that "Suddenly" Moment. Can We Bounce Back?

Wishing I had some better news....or any news for that matter.

We are still here and the relentless fevers are her constant companion, unwilling to just melt away within the perspiration that pushes through her pores several times a day.

Where have we been since my Valentine's Post?

I can't help but be in waiting mode, right? Trying to learn more, sit still and listen more...trying not to question and simmer too long in the "wonder" stage.

Wondering.....how a kid with a history of very few fevers can fall into such a rare position of chronic fevers.

Wondering how we could go from eating, drinking and walking to the bathroom to tube feeding, extreme weakness and a strange inability to even hold her head up.

Wondering, and waiting for what God's going to reveal from this odd setback.

Wondering why I can't ever be consistent with my faith. You know, that believing without seeing thing.

I have to say that we've traveled down some rocky paths in the last four weeks and have seriously been pushed to the edge of several cliffs. Scary cliffs. She has been tested for a plethora of major syndromes, infectious diseases, AutoImmune Diseases,  HIV, Tuberculosis, and many other obscure conditions they needed to rule out. Praise God they all have been negative. 🙏🏼

As of today, the team continues to scrap the bottom of the barrel looking to check off any other "one in a million" conditions as her current condition continues to baffle them.

Even the current "semi diagnosis" of "Drug Reaction with Eosinophilia and Systemic Symptoms"(DRESS) isn't conclusive. Phenobarbital is one of the bad guy drugs with this mysterious syndrome. Unfortunately, the phenobarbitol has been keeping those dang seizures in check. Check out the pictures below though. With every single hospitalization, I explain Olivia's extreme hypersensitivity to medications, and the uncharacteristic nature of her weak, damaged immune system. Every. Single. Time.

After days of testing the scary stuff, it comes back to this. Hypersensitivities to drugs.....accumulation of drug metabolites (i.e. toxic). You really can't make this stuff up.

Reflecting on the last four weeks and watching her get a tiny bit better each day, I'm reminded of God's Grace while actually simmering in that unwanted arena of the unknown. Auto Immune conditions, infectious diseases, and even cancer --- that's a heavy load. What this uncertainty did do is catapult me further into learning about His character and the obedience He requires while we are sitting in that dreaded waiting room.

I've learned that Olivia has a book written especially for her in Heaven. Her destiny before the injury.

Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. (Psalm 139:16)

His Grace gives me the strength to continue fighting for that reality instead of this painful one. We can come "boldly to the throne of grace, that we may obtain mercy and find grace to help us" Hebrews 4:16.

A friend of mine shared a podcast to listen to and it knocked my socks off. Exactly the words I needed in this confusing season.

Graham Cooke - God gives us the Upper Hand in Places of Defeat.

So many confirmations I needed here:

"Perfecting the art of bouncing back......we can't be 100% all the time........consistency.......God's Grace in allowing you to bounce back to a higher place than where you fell from.......going to a higher place of victory."

So incredibly good.

I continue to proclaim her future:

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)


p.s. this is a really good one too:

Graham Cooke - Turning Your Setback into a Comeback

Wednesday, February 14, 2018

Valentine Fever? When loving the broken is this year's plan 💔

Love. What a crazy, exhilarating, powerful word.......feeling......calling.

Past Valentines for my family have been filled with excitement, tenderness with little's, cute heart underwear as gifts and of course flowers and chocolates.

But. Not. This. Year.

Going on 4 weeks in the hospital and we are stuck. Like, somewhere between a rock and a hard place. Ever been there?

For those who've been following our recent hospital experience, the complications appear to be endless. I explained in my last post Can Wisdom be elusive for the Wise that Olivia was in a lot of pain from her wisdom teeth, which continues to be overlooked as painful. We checked-in the end of January for a drug wean, and since then each day continues to morph into unbelievable complication after complication.

Now, for today. In addition to the mouth pain, this poor girl has had high fevers for over 10 days. We've had all the blood work to find a source of infection and they've come up with diddly squat. So here we are with a diagnosis of FUO - Fever of Unknown Origin --- aka a mountain of hurdles. You see, there will be no surgery with this mysterious fever. In addition, fever medications haven't been working -- maybe 50% of the time and she is getting weaker by the day.

Sometimes I just don't get it. Why do the hurdles have to be so high? My conversations with God seem to get shorter during these intense moments, I don't know..... my mind goes blank and I can't think....I don't like it.

From the fever's early beginnings my mommy instinct kept going back to the day after the abscess surgery when she was put on 6, yes 6 medications all at once. Many of these medications were major pain narcotics and for a mom with a kid who doesn't process drugs the way others do, I was a bit concerned. Within two days of starting these medications her fevers started.....and never stopped.

Ten days later, they now have a theory. Drug fever. Hmmmmm.....yes, a reaction to a drug, exactly what I was concerned about. But hey, I'm just a mom.

New meds, high, unexplained fevers = drug fever. Here's a news flash.......medicines have side effects and actually can cause problems. Benefits do not always outweigh the risks.

So, we wait. We wait for her little body to deal with whatever it could not handle. We all know the waiting is the hardest. This song. "Take Courage" is incredible. Words so spot on for my weary valentine heart and painful days of waiting. If this post catches you on a vulnerable Valentine's Day lean in....you won't be disappointed.

Slow down, take time
Breath in He said
He'd reveal what's to come
The thoughts in His mind
Always higher than mine
He'll reveal all to come

Take courage my heart
Stay steadfast my soul
He's in the waiting
Hold onto your hope
As your triumph unfolds
He's never failing

I am so thankful for your prayers. Holding onto my hope that she'll pull through this. Once she does, her wisdom teeth will have to come out. Praying these days shorten up quickly.❤️


Saturday, February 10, 2018

Can Wisdom be elusive for the wise?

Hey there friends.

So thankful for your prayers. Olivia continues to need them.❤️

Yes, we are still in the hospital. Three weeks today. Sigh.

Testing...scanning.....blood work....ultrasounds.....Echo's.....such sophisticated tests, all of which are mostly normal. High temps, no bacterial indications, high liver enzymes.......constant hand biting.

I'm not a doctor but the obvious (in my opinion) continues to get pushed off the table.

Wisdom teeth.


I can vouch for Olivia. Never have I witnessed her biting her hands for days and days, week after week. It's just never been part of her picture. Ever.

I remember vividly the day my wisdom teeth attempted their shenanigans in my mouth. I was a sophomore in college.....living without a care, day in and day out. It was an average day. Work, class, a little hang time with my friends, late night studying, then bed. All of a sudden, at 3:00 in the morning I woke up in extreme pain. A pain I had never felt in my mouth. I did what every other college student would do, I called my Mom. By 8:00 that morning I had an appointment with the local surgeon and by that afternoon they were out.

My baby girl has no voice. Her ability to explain her pain has been stolen. Can you even imagine?

What has complicated this hospitalization is a known fact......mouth pain and doctors do not gel. I've heard apology after apology from the hospital staff, this is definitely a hole in our current healthcare system. Dentists are a luxury at hospitals.

Most people are able to explain their pain when it first begins like I did in college.  For those who are nonverbal, that option doesn't exist. So they suffer. They cry. Soon they have no choice but resort to behaviors they can no longer control. They lash out. They lose control. They bite themselves.....inside screaming silently at the top of their lungs. Help Me!!!!

And then. Then they are medicated. They are heavily medicated to end the struggle, with the root problem never addressed.

One analogy I recently shared with the rounding doctor -- Someone steps on a nail. They go to the doctor and they are prescribed antibiotics and pain medication and sent on their way. The pain continues to get worse.....the nail is still there....the root cause of the pain never addressed. He laughed and said that would never happen -  but is that true? I think it happens more than we think. We have a symptom, it's not well understood and the only tool in their toolbox is a medicine that just deadens the symptoms, many times creating more problems from the treatment.

When we checked in here all of Olivia's blood tests were normal. Now, we are dealing with high liver and kidney tests and a host of other complications that happen to be "side effects" of potent medications that haven't resolved a persistent high fever that magically started after iv treatment.

I've been praying for wisdom for quite a while. I never dreamed it would be this literal.

The Bible teaches that wisdom is ours for the asking, He gives it generously (James 1:5) Even if we don't believe it.

I really like The Message translation on this 1 Corinthians scripture on wisdom and the wise:

The Message that points to Christ on the Cross seems like sheer silliness to those hell-bent on destruction, but for those on the way of salvation, it makes perfect sense. This is the way God works, and most powerfully as it turns out. It’s written,

I’ll turn conventional wisdom on its head,
I’ll expose so-called experts as crackpots.

So where can you find someone truly wise, truly educated, truly intelligent in this day and age? Hasn’t God exposed it all as pretentious nonsense? Since the world in all its fancy wisdom never had a clue when it came to knowing God, God in his wisdom took delight in using what the world considered dumb—preaching, of all things!—to bring those who trust Him into the way of salvation.

While Jews clamor for miraculous demonstrations and Greeks go in for philosophical wisdom, we go right on proclaiming Christ, the Crucified. Jews treat this like an anti-miracle—and Greeks pass it off as absurd. But to us who are personally called by God himself—both Jews and Greeks—Christ is God’s ultimate miracle and wisdom all wrapped up in one. Human wisdom is so tinny, so impotent, next to the seeming absurdity of God. Human strength can’t begin to compete with God’s “weakness.”

Take a good look, friends, at who you were when you got called into this life. I don’t see many of “the brightest and the best” among you, not many influential, not many from high-society families. Isn’t it obvious that God deliberately chose men and women that the culture overlooks and exploits and abuses, chose these “nobodies” to expose the hollow pretensions of the “somebodies”? That makes it quite clear that none of you can get by with blowing your own horn before God. Everything that we have—right thinking and right living, a clean slate and a fresh start—comes from God by way of Jesus Christ. That’s why we have the saying, “If you’re going to blow a horn, blow a trumpet for God.”1 Corinthians 1:20-31 The Message (MSG)

Another version of the most important verse here:
But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty; 1 Corinthians 1:27 NKJV

Please don't get me wrong. I appreciate and am thankful for the hardworking doctors and nurses that have been taking care of Olivia for the past three weeks, but sometimes the simple answer is passed as illegitimate, common sense thrown out the window.

I know. I'm only a mom, but I'm seeking the Keeper of Wisdom. The Wisest of them all, and continue to pray that He guides them to the answer - simple or complicated - so we can get her back on her feet. Back to our healing mission.