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, November 7, 2019

The People's Truth

Last night, a couple friends and I went to the premier of the controversial movie ‘Vaxxed II:The People’s Truth’ . 
I’ve been up front and honest as to what destroyed Olivia’s life, and it is detailed in this movie. 
These are the people’s stories, so if you question my believability, sink your teeth into one of the many stories of lives destroyed and talked about in the movie.
Hundreds......thousands of stories similar to mine. Olivia’s name is 1 of over 7000 names written on a bus that toured the United States and is a moving memorial dedicated to those injured.
I was fortunate enough to meet and visit Polly Tommey, the executive producer of this movie and the mother of a vaccine injured son, in August 2017. This was three months before the first devastating hospital stay. As I rewatched the video, I couldn’t help but notice how unwell Olivia appears - especially compared to her today. 
I will post the movie trailer in the comments.
Our conversation was videotaped and here is that link

-24:10


Trailer for Vaxxed II: The People's Truth








Wednesday, November 6, 2019

Update on Olivia ❤️


Happy Wednesday everyone!
Wanted to give a quick update on Olivia!!
Thank God she continues to get stronger and stronger with each passing day. I've been so busy researching and self-teaching therapies and protocols that have benefited my beautiful girl......and they are working!!! 



Remember? We are on a new path. A path filled with new information on the damage her body sustained from her childhood vaccines.
Here are some highlights:
I have continued to wean her off damaging medications and with each decrease her vitality is coming back.
Her strength is 90% back from the 2018 hospital stay from hell! They discharged her with a "new normal". That new normal was tube feeding with no head control, no sitting and definitely no standing or walking. Look at this girl!!!! Sitting up straight and proud! (check out my blog for full story on our hospital stay - www.restoringolivia.com
She is able to move and control her arms and legs. Weird, right? After that disastrous hospital stay, she could not lift her arms and legs without assistance. I'm pleased to say that she is now free to control her arms and legs! So exciting!! I'm researching a condition that was mentioned when she was first discharged ---- functional paralysis -- I'll tell you more about it later.
We have a busy November on tap
- dental appointments to figure out how to get her smile back (with front teeth that is)
-we are working on eating skills
-continuing a protocol to give her body what it needs to recover, while taking away medications that have done more harm then good.
-walking, walking, walking
xo,
Kelly

Wednesday, September 18, 2019

Happy 21st Birthday Olivia!!!😘❤️😘

Happy 21st Birthday Olivia!😘❤️😘

I'm not going to lie. Monumental days, like today are still hard....how can it be that her life is so hard?
Today, I will spare you the yearly breakdown post. I've put together this new list....21 things to be thankful for.


xo

Kelly

Tuesday, September 3, 2019

First Day of School!

First day of school.....Where are we at this year - Grade 14?






I am so extremely thankful for our extremely busy summer. So much good is going on......so much straightening out to this long, curvy, crooked journey we've been on for too many years.

I have been making changes, following a new script....

She's getting stronger, and most important of all, the seizures are decreasing like never before. I need to cross my fingers and hold my breath as I share encouraging news that she had 10 full days with absolutely NO seizures!

EEK!

Looking forward to this upcoming year.....

xo

Kelly

Sunday, July 14, 2019

Five steps up.....two steps back

Hello on this beautiful Sunday afternoon!

Sitting here, thinking about this update I wanted to give you on Olivia and the same song played over and over in my mind. "One step Up" by Bruce Springsteen. Do any of you remember it? Not sure why it was on "repeat" in my head, I haven't heard it in years. I went with the teaser and looked it up and listened. Beautifully raw lyrics about a marriage falling apart....no matter what they did, the one step up was completely devoured by the inevitable two steps back. Timeless pain.

Maybe it was swirling in my head because I've been thinking about Olivia's journey so far this year. Initially, it was so hard to keep up. For us, it was one step up and one step back, kind of status quo for a period of time, leaving me to wonder if I'd ever get my girl back from the last horrific hospital stay. Was the damage just too much for her tiny little body? Just then a humbling whisper reminded me of an earlier time Bruce's famous song title became her life.  Beginning in 2013, the backward steps in her health came at such an astounding rate, she was in a downward, backward, free fall spiral that seemed like would never stop. The only recognizable step forward seemed to be in my faith that the spiral could stop, that her health could be recovered, and that she could get her life back. I buried my head in research. I fell to my knees for wisdom. I clung to God's word and scriptures that told of of a different path, of a different story.

Like this one:




I've been blind----sided by what has happened with my girl. Taken down so many known, familiar paths that have lead us into darkness. It has been beyond rough. Like Bruce says in his song, "we've given each other some hard lessons lately, but we ain't learnin', we're the same sad story that's a fact". But this line resonates deeper, "another battle in our dirty little war". It's been a war, and we had been losing, one battle at a time.

I'm on this new path now. The better One from above. A new, unfamiliar path guided solely by Him, and, by gosh, it seems to be working. The light is peering in, the rough places less rocky and easier to navigate. Not smooth yet, by any means, but less rough for certain.

This past week some big steps were taken! After 16 months of sleeping in our main floor office, Olivia's bed has been moved back into her bedroom!!!


I'd say this is actually 15 steps, since that is how many steps we have to get to the second floor bedrooms, which she has to do 2 x/day now. Of course she needs assistance, but 16 months ago this was an impossibility......it's now a reality.

Second big step was getting her out of the house and attending the local parade, which happened to include her younger sister. We had a rough start to the early evening with a seizure that left her tired, in addition to a cut above her eye, but she rebounded and we were able to go and watch Olivia's younger sister participate in the parade.





Not perfect, but we went.

It worked.

It's a start.

I believe it's only going to get smoother.

Praying for the "5 steps up, 2 steps back" to morph into "10 steps up, 1 step back", and so on and so forth.

Being on the right path makes all the difference.

xo

Kelly

Friday, June 7, 2019

Autism One 2019 - RFK Jr. Quote Video


I have never attended the yearly Autism One conference....I've always been too stressed out with Olivia's health. I wish I could have attended this year. 

Thankfully, I was able to watch several of the presentations via YouTube. Robert F. Kennedy's presentation was amazing.....especially the quote I created this video with.❤️





xo

Kelly

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!!

xo

Kelly