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.

Saturday, November 28, 2015

So very thankful..........Thanksgiving 2015

Happy Thanksgiving! I know I am a bit late with sharing my gratitude......but better late than never! Computer problems, time constraints and an inability to really think through what I wanted to share kept me from being timely. I loved seeing all the public messages on Facebook (and other social media sites) about being thankful and loving and holding those that surround you on the annual gratitude day.

I loved these messages because it's a feeling that is so coveted...so wanted by so many, so.......... lovely.   I really wish our story was just that......lovely.  I've thought about that word this entire weekend and I have to admit that sometimes reading about things that are/seem so lovely......so perfect.....so mistake free.....have the opposite effect on me. Sometimes, it can cause me to feel like a failure, inadequate, incapable and extremely imperfect because of my experience with Olivia's health over the last fifteen years. Everything we tried to help Olivia failed. Life's "hard". Trying to experience life as lovely felt impossible. 

To tell our story truthfully, you would see how simply unlovely of a journey it has all been. Unlovely in terms of the "fall out" that happens in a story like Olivia's. Fifteen years of suffering, confusion and disappointment in treatment failures that ultimately wore down relationships with distressing and traumatic consequences.

But this imperfect journey brings me to the good stuff. That good stuff being the One who can make the tough road lovely. Where Grace meets the hard road and shows the way. I feel it would be incredibly phony of me to appear like it was an easy journey for my family -- especially with the Medicinal Cannabis miracle. Phony, in that, it may appear as though I walked this difficult road in my own strength, when the opposite is true. I feel led to show you the journey of a frantic fear based mother who had no idea how to be "thankful in all circumstances" (1 Thessalonians 5:18) and learn to trust a God whose position on living is much the same as a saying my yoga instructor whispers quietly in class.......If you can breathe there, you can be there.

And so I am there. Breathing there. Accepting that our broken road prepares His will for us.  That our story has a brand new season that is just beginning. What's ironic is that it took the bulk of this 15 year journey for me to finally be content and thankful in my circumstances and then in an instant it was July 2015 and Medicinal Marijuana was legally available.....and the miracles began. It was then that I realized I was thankful before the blessing came - which said a lot about my transformation.

I am thankful for the first seizure free Thanksgiving in 15 years. I am thankful for Medicinal Cannabis, and the anti-convulsant properties that were created by God, not modern medicine. I am thankful for my husband, son and 2nd daughter. I am thankful that our family is emerging from "survival" living. I am thankful and hopeful for her future. I am thankful her bones are not frail anymore. I am thankful that she has gained 11 pounds since September. I am thankful for her progress shown in the video's below.

Video taken May 2015 - she was sliding downhill fast. This particular day I will never forget. Rounds and rounds of seizure - on the edge of my seat waiting to make the ambulance call.

First week in November - spending more and more time out of the chair. She is getting stronger and wants to walk again - to gain that freedom - but she realizes she is not ready to do on her own.

This weekend. All she wants to do is walk. Round and around our staircase gaining more and more control. 

My hope is that Olivia's progress will show God's faithfulness - even after 15 years of praying, believing but not seeing. God can restore the feeling of all things lovely --- check out His word:

Isaiah 61:1-3 The Year of the Lord’s Favor

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,[a]
to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
and provide for those who grieve in Zion—
to bestow on them a crown of beauty instead of ashes,
the oil of joy instead of mourning,
and a garment of praise instead of a spirit of despair.
They will be called oaks of righteousness,
 a planting of the Lord or the display of his splendor.

Tenth Avenue North - Times

I know I need You I need to love You I'd love to see You but it's been so long
I long to feel You I feel this need for You I need to hear You Is that so wrong

Now You pull me near You When we're close I fear You Still I'm afraid to tell you all that I've done

Are You done forgiving Or can You look past my pretending, Lord I'm so tired of defending what I've become What have I become

I hear You say My love is over It's underneath It's inside It's in between
The times that you doubt me When you can't feel The times that you question Is this for real
The times you're broken The times that you mend The times you hate me And the times that you bend

Well my love is over It's underneath It's inside It's in between  The times that you're healing And when your heart breaks The times that you feel like you've fallen from grace  The times you're hurting
The times that you heal The times you go hungry and are tempted to steal
In times of confusion In chaos and pain I'm there in your sorrow under the weight of your shame

I'm there through your heart-ache I'm there in the storm
My love I will keep you by my power alone
I don't care where you've fallen or where you have been
I'll never forsake you
My love never ends
It never ends

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