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.

Monday, December 31, 2018

Happy New Year!!

Quite the year we had in 2018.

I could go there again. You know....the place where I point out the unfairness of the last 11 months (wait the last 19  years)....but I will not.

You know why? This is the first time, since this madness all started, where I finally feel at peace.

Peace about Olivia's future.



I feel armed with REAL knowledge about her injury and a new path that has already yielded a miraculous recovery from where we started in April.

This verse from Isaiah continues to shine light in the darkness that almost took my girl:

I will lead the blind by ways they have not known,
    along unfamiliar paths I will guide them;
I will turn the darkness into light before them
    and make the rough places smooth.
These are the things I will do;
    I will not forsake them. Isaiah 42:16

 I'd like to focus on the things she has overcome this year:

  • She has regained complete head control.
  • She has regained the ability to eat, including chewing and swallowing.
  • She has regained the ability to get herself to a sitting position from laying down.
  • She has regained the ability to walk, while being supported
  • She has started attempting to raise herself up and balance on her knees.
  • She has regained the ability to walk up our two story stairwell for a bath (with help of course).
All of these gains, with none of the pharmaceuticals I was told she needed when we left the hospital. 

We are gaining ground, not losing.

I was thinking......this time I'd like to document some New Year Resolution Goals for Olivia's progress:
  • Independent walking.
  • Independent eating.
  • Self care skills.
  • Healthier year.
  • Relocating her bed back upstairs to her bedroom (with her setback, her bed is in our office).
  • Testing of communication devices.
  • ABA type therapy.
  • Getting her out in the community more.
These goals may appear as no-brainers for the average person, but for Olivia they are monumental.

I have my own resolutions...
  • To have more courage with sharing her story.  BE BRAVE
  • To trust, that for some crazy reason I was chosen for this .   BE CONFIDENT
  • To engrave on my heart what I have gained from my relationship with Jesus.  BE LOVED
A couple nuggets of truth I've learned through this hardship:
  • All things work together for good (Romans 8:28)
  • God has started and is perfecting a good work in me ( Philippians 1:6 )
  • I can find grace and mercy in my time of need ( Hebrews 4:16 )
  • He has given me a spirit of power, love and a sound mind ( 2 Timothy 1:7 )
  • I can do all things through Christ who strengthens me ( Philippians 4:13 )
  • I have been chosen and appointed by God to bear fruit ( John 15:16 )
  • I have been redeemed and forgiven of all my sins ( Colossians 1:14 )
  • I have been established, anointed and sealed by God ( 2 Corinthians 1:21-22)
  • Olivia and I are protected by His Love & Faithfulness ( Psalms 40:11 )
  • He arms me with strength, makes me surefooted as a deer. Prepares me for battle, with His shield. His right hand supports me and provides a path for my feet  to keep from slipping.         ( Psalms 18:32-36 )
I could seriously go on and on. Truth soothes those nerves of dread each and every time.

As we enter 2019 with high hopes and expectations of new possibilities for Olivia's life, I need to remember that even though I can be such a wienie when it comes to her suffering, I apparently am the one He chose for this particular journey. When I'm at the height of my "wienieness", I love to crank the volume high on Lauren Daigle's new song --- "You Say"

Here's a sampling of the lyrics:


I keep fighting voices in my mind that say I’m not enough,
Every single lie that tells me I will never measure up
Am I more than just the sum of every high and every low?
Remind me once again just who I am, because I need to know

You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say that I am Yours
And I believe, oh I believe
What You say of me
I believe

The only thing that matters now is everything You think of me
In You I find my worth, in You I find my identity,

Taking all I have and now I'm laying it at Your feet
You have every failure God, and You'll have every victory,

You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say that I am Yours
And I believe, oh I believe 
What You say of me
I believe
Oh I believe, yes I believe
What You say of me
Oh I believe


Take a listen:





Happy New Year Dear Friends ----- I'm looking forward to more Overcoming in 2019!!
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1 comment:

  1. Jeanette Forlano SlawJanuary 2, 2019 at 3:36 PM

    As always, Kelly, this post is BEAUTIFUL and so are you and your precious, Olivia! I agree with the Facebook comments, you are an amazing warrior mother and an amazing writer. You are also an amazing photographer and perhaps most important of all, you are an amazing and an inspiring woman of faith. You have gained so much courage and come such a long way in sharing Olivia's story since I first "met" you in your earliest Restoring Olivia posts. Thank you for giving so much of yourself to all of us as you give so much to Olivia. I feel truly blessed to have connected with you and to Olivia. Much love and continued prayers for you and Olivia. God bless and take care...Jeanette

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