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.

Thursday, June 6, 2019

Thankful for a stronger girl at the end of the school year

Happy Summer Everyone!!

Olivia and I are looking forward to a busy summer of rehabbing! This verse has been on my mind lately for so many reasons.

Driving home from an appointment yesterday, I had to take this video of Olivia:

As I looked over to her, I realized how far she has come this school year.

She is sitting up.....on her own. She looks relaxed and interested in the cool wind blowing her beautiful blonde ponytail around. She appears more in control, a tiny bit closer to the life that should have been hers....one of independence...one of new experiences and intellectual growth.

Milestone days are always the hardest days, and sometimes I sink back into "what should've been" land.

Just being honest.

I had an interesting talk with a friend who has had tough times and gets stuck in "what should've been" land. Although I do visit (more frequently lately), I never want to stay and establish roots there....visiting is hard enough.

Often times, I'm there with my friend and we discuss my hope in Olivia's healing and the fact that it's my faith that leads me away from that darkened place. Without fail, I'm always challenged with the questions raised by my friend's breaking heart. Questions like:

"If God was going to heal her, why hasn't he done it yet?" Invariably, I defend. I argue. My main point always being that I have free will, and because she is my child, I have always made her life's decisions for her and some of those decisions caused her harm, even though my decisions were predicated by a set of guidelines I was told I must follow. I continued....How can God heal her if I'm always giving in to the doctors, to the medicine, to the things that always seem to damage her health? In the past, I've been forced to make decisions based on fear that is fed to me by the experts, and she always ends up worse....not better.

I'm sure you've heard me talk about this before. It's maddening.

But, then, my friend threw me a loophole by further challenging....."Yeah, I can see that, but why does it even matter? You always talk of God's power & might, so even if you are making all sorts of 'free will bad decisions', He could still do it.............if He wanted to."

How can you argue that point? It's true. He could do it under any circumstances, and sometimes He chooses not to heal.

So there I sat. Confronted with a reality that many, many people experience. I could feel the roots taking hold.

Just then I remembered a scripture from a bible study I did a while back --

"Do not give dogs what is sacred; do not throw your pearls to pigs. If you do, they may trample them under their feet, and then turn and tear you to pieces".  Matthew 7:6

God has built me up. He has grown my faith and planted my feet on His sturdy foundation. This doubt is too destructive for me to entertain...even in the slightest way.  I've learned to persist, and to pursue God. Others may try and give up. That doesn't have to be my story.

Our story is the next two verses:

"Ask and it will be given to you, seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." Matthew 7:7-8

I am always learning, always reaching, always trying to find what I can do to help my girl. That is not stopping. I figure, God can always do something with what I learn, what Olivia learns and any progress for my precious girl is worth trying to move mountains.

Here's to an amazing summer of continued seeking, knocking and leaning into His Word,  and His plan for Olivia's life. I continue to remind myself that He is the Author, not only of my faith, but of her precious life! He will bring down the story He has written for her from Heaven. In His Perfect Timing!! Just you wait!!



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