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.

Wednesday, April 11, 2018

Assumption's Can Be Deceiving

I haven't been able to share with you lately. I've been in that pit again....unable to see the light. Caught up in the darkness.....you know, where deception runs rampant.

I'm trying to decide which Bible story is similar to my last couple months. Have I been in the lion's den? The fiery furnace? In an ash-heap? In prison? Fighting Goliath? Or simply walking further out into this man-made wilderness? Which is it? It's seriously up for debate in my head and it's been making me crabby.

Just being real.

Thus the reason I haven't been writing to you. Who wants to listen to a crabby person vent (other than my mom, jk ๐Ÿ˜‚)? Certainly not you, and I respect that.

That said, I have good news for you by the end of this post. I promise.

What I'd like to share is the truth about my experience with Olivia over the last couple months. One word was king......Assumptions.



We've all heard the expression, right? Don't assume.....it makes an a** out of u and me. Silly...right? Or might this just be dead on?

Most of Olivia's really bad days have begun with assumptions, and the last several months have proven this to be true.

Assumptions are all you have when your child is non-verbal and not able to communicate with you. On January 20th we assumed she was having a "rage" adverse reaction to the medication Keppra since she has experienced it before. Just ask her elementary teacher and aides....scars from her gouging their arms probably still exist. It was a sensible conclusion, but this time her rage was directed at herself. Self-harm. Gouging of her face. This post explains the details.

We assumed and we started weaning in the hospital, but the self-harm continued. A CT scan was done and it revealed that she actually had an abscess in her mouth that was hidden from our sight. We assumed  the root canal an ENT performed a couple years ago had worked. She was in pain and could not tell us, that is, we didn't think she could tell us. In reality, though, she was. She was screaming at the top of her lungs, eventually having to intensify her message because we just weren't getting it. She upped her game.......with the clawing of her face....the constant biting of her hands and the constant writhing in pain.

At the time this CT finding was a blessing, I sighed with relief. The surgery to remove the abscess (and unfortunately 2 of her front teeth) was done and I was anxious for her to recover so we could return home.

I assumed wrong.

When she returned from surgery I was met with members of the pain and palliative care and infectious disease teams, and this is where the assumptions ran wild.

Standard of care for pain. Opioids+.

I was told she would be getting the following medications:

Oxycodone
Dilaudid
Hydroxyzine
IV Tylenol
Motrin
Ativan
Unasyn for the "possible" abscess infection.

I told them. "Olivia does not do medications well! Her body does not break them down properly." "This is too much for her." "She had an abscess in that exact same spot before - she did 7 days of amoxicillin and OTC Advil ---- that's it!"

If you get me, you know I am a fierce advocate for Olivia. But, unfortunately that didn't matter. They are the experts - I am nothing. In an instant, I'm reminded of a clip from the movie "Matilda" I've shared on my blog before - "Listen you little wiseacre. I'm smart, you're dumb --- I'm big, you're little. I'm right, you're wrong, and there is nothing you can do about it."



And that there is truth. There was nothing I could do about it, and that's where things took a turn for the worst. 

High fevers, every day for a month. Liver enzymes elevated. Pancreatitis. She needed enema's and catheters to eliminate. Visits from other specialists due to other elevated blood tests. Endocrinology, Gastroenterology, Radiologists, Pharmacogenetics and towards the end, the Physical Medicine experts. 

I'd like to invite you into her hospital room  -  number 5020. This small room where I ate, slept and sat for 8 weeks..... watching my daughter slip into a world I had never seen before. In a sense, I likened it to a "lion's den" and daily I was thrown into the "fiery furnace" of despair and worry as they checked off the testing of one horrible and critical disease after another. Scans and X-rays repeated over and over. Waiting for test results became excruciating. "Goliath" visited me on a daily basis as he became more and more frustrated with normal test results as the "fire" of her daily high fever became ever so intimidating. They exhausted all the causes ---- except for one. Drug reaction. Multiple drug reactions. DRESS (Drug Reaction Eosinophils Systemic Syndrome). 

aka - poisoning.

When we checked in on January 20th she was sitting up, eating and drinking real food --- walking to the bathroom and so strong with the self-harm they had to put "No-No's" on both of her arms. They even considered putting her arms in restraints. The darkness hid the abscess, but even with the unknown infection, she did not have a fever. The fevers began after the onslaught of the medications. Can you even imagine taking all of those medications at the same time for days on end? Can you imagine losing your ability to control your bodily functions and not be able to tell anyone? Excruciating to think about. Excruciating to be a parent and to have to witness it, unable to do anything. You know why? Never once did they believe that their standard of care was responsible. They assumed that her fragile body could handle all those medications, and because of this assumption it then became her fault. It was her "underlying" condition that caused it all. It had to be because their "superior knowledge" is infallible.  Period.

This elusive "underlying" condition. What exactly is it? They tested her for everything under the sun, including every known autoimmune test....every cancer panel. Everything came back normal. The real cause became the elephant in the room. Each morning the "team" would file in, carefully slipping past that darn elephant that grew larger by the day. Towards the end of our stay, I watched them closely as they entered the room. My minds eye saw them sheepishly squeeze by the room full of truth and pridefully announce the following assumptions:

  1. Olivia's fevers were/are a result of her "underlying" condition and it's a defect in her brain (even though they did not see anything on an MRI.)
  2. Olivia's newly acquire hypertonia (which she did not have at admission) is a result of her "underlying" condition and it is her new normal. (To me it looked like severe Charlie Horses).
  3. Olivia's inability to use her left arm (which became floppy and unusable) is a result of her "underlying" condition and it will be her new normal.
  4. Olivia's inability to sit up or hold her head up is a result of her "underlying" condition and will be her new normal.
  5. Olivia's extreme weakness and inability to eat and drink is a result of her "underlying" condition and will be her new normal.

And soon I began falling.....falling into that pit that I've crawled out of time and time again. The pit of wondering where God was, the pit of feeling forsaken, the pit of grasping at and clinging to mere shoestrings of faith that I've spent years building up in my heart. I was alone. All the time. Listening to these lies about my baby girl. My vision for her was fading....quickly. What about his plans for her life? Are they no longer good? Remember? I had just figured out some big pieces to her puzzle before this whole mess started. This is the absolute worst condition she has ever been in.

Finally, one morning I thought about everything that had happened and the rush of emotions crashing down on me. Daily. Isolation...confusion....condemnation.....discouragement....fearfulness. In an instant I'm reminded that these feelings....these emotions are liars. This liar was wearing me down, leaving me frazzled, stripping away my courage. From that point on I redirected my attention to God's word ferociously to remind myself what comes from Him. He stills me. Reassures me. Calms and comforts me. He enlightens me. Intimidation was not His way.

This situation was not Olivia's "underlying" condition. This team's gross assumptions about medications and the benefit/risk ratio were undeniably skewed. These doctors have an uncanny belief that drugs are only good. The more the better. Side effects? What is that? Especially the "experts". The pain expert appeared to have memory lapses when I correctly pointed out that the constant vomiting and drench sweat fits were not part of Olivia's picture, but were meticulously detailed in the side effect profile of benzo's. Her daily comments of how "wonderfully" Olivia was responding to the potent opioid's and benzo's painted a grossly unprofessional picture of an expert who clearly only saw blur after the words "side effects". The infectious disease experts were all over the board. Even with a negative culture, fevers were their specialty and while one said the course of antibiotics was enough for the "what ifs", the director of the department charged in one day like chicken little demanding a pic line with a 6 month iv antibiotic course, only to completely recant this hysteria the following day.

Finally, the insanity was made complete when the aloof Physical Medicine doctor and his lovely assistant swooped in like vultures to render their final and prideful opinion about Olivia and the poor prognosis they had for her future. No time to listen to what she was doing 8 weeks prior. Her muscles were not tight when admitted. Her arm was strong. Her back used to straighten. She was walking.
No rehabilitation. She didn't qualify. Drugs. That's what she needs.

I tell you this not to berate anyone, but to only tell the truth of what happened. Assumptions regarding powerful medications, incomplete knowledge, prideful ignorance with absolutely no wisdom.

And then they sent her home. A new version of disabled. The weakest I've ever seen her. Her "new normal" according to the Children's experts. All because of a simple, run of the mill abscess that was not systemic. The same exact procedure was performed in an ENT office a couple years ago.

She used to walk up the stairs to her bedroom. Not anymore. We have a mattress on the floor in our office. She used to walk up the stairs to take a bath. Not anymore. Sponge baths on the floor.  She used to eat with her adapted spoon. Not anymore. NG tube feeding. She used to walk to the bathroom. Not anymore. She used to sit up on her own. Not anymore. We need a Hoyer Lift.




It has been extremely trying. I've tried to recount and claim the many times she has gone backwards and recovered her lost skills.  One night while laying next to her as she drifted off to sleep I realized that it's been her that has been in the lion's den. Seizures have been her fiery furnace. She fights Goliath daily. 18 years she has lived in an ash-heap. Her entire life she has lived in a prison, which is sadly her own body. Together we've been traveling in this man-made wilderness and in that darkness I again entertained the idea that we were and are total and complete victims. Especially with this last hospital stay. It was like one last kick to the curb. That's it. I was up all night.

Wallowing in victimhood.

But then.........I got up and started moving in the new day and I heard an incredible song ---- "I am no victim" by Kristene DiMarco and I knew it was just for me.❤️




I'm reminded...... with God.....


I am no victim. I live with a vision
I’m covered by the force of Love. Covered in my Savior’s blood
I am no orphan. I’m not a poor man
The Kingdom’s now become my own
And with the King I have a home

He’s not just reviving. Not simply restoring
Greater things have yet to come

He is my Father.I do not wonder
If His plans for me are good. If He’ll come through like he should
Cuz He is provision. And enough wisdom
To usher in my brightest days. To turn my mourning into praise

I am who He says I am. He is who He says He is
I’m defined by all His promises. Shaped by every word He says


If you're like me and like live worship video's, here's her live video:


This live version is my favorite. I crank it up so loud I lose myself in the message. That's just what I do to crawl out of the pit of unbelief and darkness. Music. Loud. My mom always says "Why do you listen to it so loud?" Until this round of adversity I always assumed that I need it loud to release my sorrow. As I sit here tonight, the clear whisper I hear is that I need it loud to blast past my head.....past my thinking....past my logical determination of the dire circumstances I am living in with Olivia. I need it loud for it to bypass the "intellectual arrogance that opposes the knowledge of God. (2 Corinthian's 10:5). It's the only way for that much needed God sized Hoyer lift to lift my heart and the rest of my earthly baggage out of this deep, dark pit I find myself in when Olivia tumbles down.

I've realized that I don't have to assume God's promises for Olivia's recovery from this assault...I just need to continue to believe. Like the song says....I am who he says I am.....Olivia is who He says she is......Healed.....Abundant Life....Christ Like.....Wonderfully Made.....A New Creation.....An Overcomer......

My faith says she'll come out of this and she won't even smell like smoke. (Daniel 3:26-27)

xo

p.s. I would like to send a shout out to the amazing nurses, csa's and several doctors who were champions with Olivia during this very difficult hospital stay. I'm grateful for your love and compassion.


Monday, March 5, 2018

The Perfect Storm

What a stormy 6 weeks it has been. Unfortunately, we are still here. We've moved rooms a couple times but the overall scenery is still the same. Sterile. The nights can be long, but these amazing nurses do what they can to keep me comfortable.

I've been thinking about the comparison of this extended hospital season to a storm for quite a while now. How perfect of an analogy is that?

A common definition of the phrase "Perfect Storm" is "a combination of events which are not individually dangerous, but occurring together produce a disastrous outcome."


Yep. Our stay in a nutshell. Olivia's inability to tell me what was actually going on in her mouth, the bad reactions to medications resulting in a systemic trigger in her little body and her inability to clear the resulting chemicals from her system = 7/8 week extended sleepover. (sigh)

The doctors were/are stumped. No one wanted to believe the inevitable diagnosis -- a medication reaction. Each week new tests have been ordered to rule out the "new disease" of the week, all as I sweated through waiting for the results, time after time. I'm so thankful that everything tested has come back negative or normal. I've compiled a list for your perusal:

I am thankful that I now know that......... she is not pregnant.....she does not have HIV, Tuberculosis, Epstein Barr, Cytomegalovirus, A major bone infection, any autoimmune diseases, Leukemia, Lymphoma, Herpes HHV6 or 7, Shingles, Liver disease, other infections from other countries, Diabetes, VCV-PCR, TB1 or 2, Mitogen Minus, Thyroid disease, Gallstones, Mycelial or Major Immune System Disorder.

We have that going for us๐Ÿ™๐Ÿผ

I can say that as time has gone by, the fevers are slowly dissipating! Yay! Her high lipase and liver functioning tests have finally returned to normal. She is weak and is still having some trouble as we wean her off a medication that she unfortunately became dependent on during this hospital stay. Hypersensitive people may be able to relate. Withdrawal is brutal.

Although we remain at the tail end of this internal storm, I was able to venture out a bit on Saturday for a long walk up the steep hill that happens to be steps away from the hospital entrance. Besides the fact that I'm now suddenly out of shape, the trek up was invigorating and worthwhile. As I crested the top of the hill, I was greeted by gorgeous vintage mansions in their full antiquated glory as seasoned runners sped past me in a flash.

Drinking it all in....the scenery, the fresh smell of spring (well, kinda spring)... I started to notice the runners up ahead of me coming to a dead stop as they carefully crossed what looked like lighter spots on the sidewalk. As I got closer I realized the deception that stopped them dead in their tracks. Water on top....ice underneath...snow on the sides...... intermittently dispersed across their path. Dangerous, irritating and deceptive as they had previously sailed along listening to their favorite music with their headphones.

I couldn't help but realize that what I was witnessing was a perfect parallel of my life these last 18 years. I mean, really.....It started out so beautiful. I was sailing along. I was married to the love of my life, had a baby boy.....then a girl. We were set.

Of course, we all have our paths coated with a little ice or water,  glazing on top or deceptively hidden beneath, causing us to temporarily stop and be forced to figure out how to best get across to the other side where our soles (or would that be souls?) are safe and grounded. We then pick up our original pace. It's all good again. My journey, on the other hand, started out this way and eventually ended up like the eternal winter Elsa from the movie Frozen started as her "shit hit the fan" (pardon my french). Icy. Stormy. Blinding blizzard of confusion. Fear. Loss of control. Endless cold. Forgotten dry patches that were perfect for nonslip soles.

Here's where it gets good. I finally feel like it's thawing. It's melting. My sole's (or soul) is secure on dry ground....not slipping and sliding...with no more tall mounds of snow on each side to force a dangerous fall filled with slipping and sliding.

This hospital stay has fleshed out a couple major things that have probably contributed to Olivia's lack of recovery in the last couple years. Abscess's contain a major infection and quite literally a daily drain on her already compromised immune system. The energy used to keep that infection walled off from the rest of the body is exhausting. The fact that she never had a fever to indicate it was there is somewhat remarkable, but for Olivia's journey it's the frosting on the cake.

The wisdom teeth. Yes, they are still there. This surgery will be done at a future time, after she's recovered, gained weight and regained her appetite and strength back. Frustrating, but storm worthy.

I began searching the bible for storm related scripture. I absolutely love Isaiah 54:11 - the scripture I used in the storm picture.

"O afflicted one, storm-tossed, and not comforted, 
Behold, I will set your stones in antimony, 
And your foundations I will lay in sapphires. Isaiah 54:11

I love reading biblical commentaries that dive deep into scripture to give a broader meaning. This one is so good. Isaiah 54 is talking about God's assurance of restoration and renewal of the city of Jerusalem, future blessings for the people of God.  Jerusalem will exceed what she had before, His mercy, new beginnings. The nation will be restored to it's original purpose.

While reading these interpretations, goosebumps appeared as a faint whispering tugged at my ear, for Jerusalem/Olivia or anyone else looking for a set of words that can open up possibilities. Yes, the storms have been tough. Afflicted, and not comforted play a role in what have felt like an "eternal winter".  What's amazing is that He sets our stones in antimony.........which happens to be a compound used for fireproofing. Fireproofed for a calling or a purpose whether big or small, it's everlasting. Additional strength for a calling to never give up on her.

Looking for that cure for her. I will never stop unless I'm directed elsewhere. What do I have to lose? This journey and what I have learned has opened my eyes to the detour we blindly took, and I'm just removing the blindfold. That's all.

As I look into the light sapphire blue eyes of my courageous warrior, I feel compelled to conclude what many commentaries have written......that Sapphire is the hue of heaven.❤️

She's getting better everyday. It may be baby steps, but we are moving forward. Thank you for the prayers.

xo











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 faรงades 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


xo






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. ๐Ÿ™๐Ÿผ

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)



xo




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 ๐Ÿ’”

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.❤️

xo




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.

Pain.



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.

xo











Thursday, January 25, 2018

Back here again.....

What in the world is going on? We are back. Again. Sigh,



This past Saturday was such a great day with my little dancer. One phone call later and it's a buzz kill.

Olivia has been having "rage" sessions again, a major side effect of the anti-seizure drug Keppra. We've been down this road before with this medication, and the timing seemed right since they doubled her dose during the hospitalization in December.

For those of you that have been following our journey for awhile, I've been trying to wean her off Keppra for years. Sounds weird, right? Why is it taking so long?

It seems like I almost get her there and then boom.....she's in the hospital. The first thing they do is double it, because, you know.....Keppra is wonderful for EVERYONE. MORE=BETTER.

Not for Olivia.

For more on past side effects, please read SIDE EFFECTS ARE BRUTAL.

It's always a process when you haven't found a medicine that works, and especially when that elusive "cocktail" of meds has not been concocted.

This time was intense but it seemed like she was doing way more self harm than usual. She was scratching her face, pulling at her cheeks and biting her hands......like crazy. Most of it was done in the ER before they settled her down. Something I hadn't seen before. Something was different.







First day in they started the wean, going down faster than I had ever done with her. Like, really fast. Every three days they were decreasing it by 125mg 2x/day.

The rage against herself was not going away.

A couple days later, one of my favorite nurses walked in to say hi and happened to notice how much weight she had gained.....especially in her face. As I looked Olivia's way, I realized that her face had morphed drastically. She had big cheeks.....bigger than normal. It was then that I realized that there was something wrong with her teeth.......and after a couple xrays it was confirmed. WISDOM TEETH!!

All four were on the move, and unfortunately, they have no room.

Olivia needs them out.....yesterday. This type of procedure is typically not done in a hospital, generally it's an outpatient procedure......at an oral surgeons clinic most likely.

It's been a couple days of navigating a path very few take. Doctors are not dentists and do not venture in the 3 inches or so between your chin and your nose. Some challenges have been presented and some protocols overturned.

Remember my snowball analogy I used in my last post? This hospitalization is completely different. Olivia is in A LOT of pain. Can you imagine having that much pain and not being able to communicate it? Know wonder she was thrashing at her cheeks, and biting everything in site.

Today we are trying to get ahead of the pain. We lost some ground and have been piggy backing pain meds to get it under control.

I'm grateful for the Hospitalist that has gone to bat for Olivia when hospital protocol leans toward discharge and reschedule. She literally can not handle one more day of this excruciating pain.

Please pray that a surgeon's schedule opens up, she tolerates the surgery and is on the road to recovery SOON!

xo