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.

Sunday, March 3, 2019

Finally....the doors are opening. 🙌🏻

I'm wondering if anyone can relate?

Are there others like me?  Others, who just followed the rules and got burned? Others, who have sat on the sidelines and watched as other vaccine injured children have reclaimed their lives with drugs, therapy or supplement intervention?

I have spent years and years trying to fix it...you know, that mistake I made out of ignorance. Years and years of attempting an array of things to help her....only to have door after door slammed in my face.

And now, suddenly, a couple new doors are opening.



I absolutely love this scripture. To add some context, it comes from John's letter to the Church of Philadelphia, one of the seven churches in the province of Asia that he writes to about a vision he received from Christ.

Incredible words from an incredible time. Words that I can take hold of for myself, for Olivia. Words that are living for me and my situation today.

He knows my works. An open door that NO ONE is able to shut. He KNOWS I have but little power in my situation. He KNOWS I have kept my word and have not denied HIS name.

How much more can I ask?

Right now, with Olivia, it's subtle things. Subtle differences that have taken root over the last several months. To the average person there's no hint of anything big taking place. All in all, she still appears the same. She still has seizures (although not as many and not as hard), she is still a bit weak and not able to walk on her own (but can walk up the stairs to take a bath on most days). We are almost back to her baseline before the last hospitalization. Whew! That was a lot of work - but so worth it!

I don't know.....its just a feeling, like a change in the atmosphere of our situation. Hard to quantify but that feeling of daily dread has lifted. We are on a new road now and although the appearance of what's to come is "a cloud as small as a man's fist" (I Kings 18:44), I know the rain of blessings is coming. I can feel it.

I apologize for the lack of updates. Olivia's care has been more demanding and I am in the process of cleaning out my in-laws house. Unfortunately, they both passed away within months of each other . It's a difficult thing to sort through the remnants of two lives.....seeing the material things we collect along the way as just that..... material things that stay back and linger in the basement.

Even with all the hardships with Olivia over that last almost two decades, I feel I can still stand strong and recognize the goodness of God in my life. Yes, He allowed this devastation, but "allowed" is the main point. I CHOSE to trust and believe in a manmade system of health care. I was blind and ignorant to the choice I made - I did zero research on the dangers of vaccines and the damage that can and does inflict SO many children. Haunting U.S. statistics:

1 in 20 children under the age of 5 have or have had seizures
1 in 38 children are now Autistic
1 in 10 children have ADHD
1 in 6 children have learning disabilities

*CDC statistics

The takeaway for us is that He sustained her instead of taking her. He protected her body and brain from all the pharmaceutical medications --- especially from all the potent medications she was given in the hospital in early 2018. Remember....they said she would never be able to hold her head up again. Their "New Normal" prognosis can't stand up to the power of God's provision.

I was reminded of this gorgeous song last week. Bethel Music!❤️❤️❤️❤️



Lyric nuggets from this song that speak to me:

For Your mercy never failed me
All my days, I've been held in Your hands

 I love Your voice
You have led me through the fire
And in darkest night You are close like no other

 'Cause Your goodness is running after, it's running after me
Your goodness is running after, it's running after me



Olivia the "snow bird" getting off the bus. The amount of snow we've had is crazy!! I choose to believe that for Olivia and I this is the beginning of our SHOWER of BLESSINGS!!! It's just in frozen form right now!

xo

kelly



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1 comment:

  1. Jeanette Forlano SlawMarch 3, 2019 at 8:43 PM

    Kelly...you are such a beautiful woman. I love reading your updates. You always mange to touch my heart and inspire me. Much love and ongoing prayers for you and Olivia. God bless and take care...

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