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.

Tuesday, September 18, 2018

Happy 20th Birthday Olivia!


We all say it as our kids get older.....How can it be? 20 years have gone by for my baby girl and my heart feels heavy.



Oh, friends. I want to be positive. I want to use fluffy unicorn words to portray a fake, picture perfect response to such a monumental day. Can I just be real? Can I just be honest?

If nothing else, this....this being real......showing my human weakness is a big part of this faith journey I've been on.  In many respects, it parallels Olivia's current physical recovery efforts.

What the heck am I talking about?

I was just discussing this concept with a friend the other day. The concept is simple and hard in the same breath......as we recover....as we heal we have good days....but then we have bad days. As time goes on, soon our good days are equal to those bad days. Then, all of a sudden, there are more good days and the bad days aren't quite as bad as they were.

You get the picture.

Olivia and I are two peas in a pod. Those good days are multiplying, but the bad can overtake us in a moment.... sometimes for more than a moment.....kind of like the fierce storm that swept through our area in the last 24 hrs. Clouds moving in swiftly, lightning that appears to be coming through your windows and of course the gigantic "BOOM" of the delayed thunder as it wakes every living creature in the middle of the night. While laying in bed thinking, (let's be real....OVERthinking) the firey storm reminded me of one of my "go to" songs from a long time ago....."Praise You in The Storm " by Casting Crowns. Those heavenly lyrics...they kept me going when my bad days outnumbered the good. Here's a sampling:

I was sure by now, God you would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
That it's still raining
As the thunder rolls
I barely hear your whisper through the rain
"I'm with you"
And as your mercy falls
I raise my hands and praise
The God who gives and takes away.

Here's the good new about my journey thus far.....

As I think back, my bad days only turned good as I grabbed hold of God's word. In actuality, my "bad" days back then were really bad even though Olivia's health was better (she was eating by herself, walking and did not need a wheelchair). I hope I'm articulating this correctly. So, even though this "storm" in my life has intensified to a present day tsunami level, my bad days are a fraction of what they used to be and I give all that praise to the One who has led my heart down a path of redemption and freedom.

Redemption. One Oxford definition says that is is "the act of being saved by error".

Redemption and Freedom. Yes, freedom from the guilt and shame of my error.......blindly trusting a "belief" system, freedom from my self condemnation for such blatant ignorance of the choices I was making for my beautiful girl. My beautiful young lady.

That's how Good He is.

Here's what's crazy........my annual "what does God's word say about numbers bit".....she's 20 now. Biblically speaking the meaning of 20 symbolizes redemption, and/or a complete or perfect waiting period.

Can't make this stuff up.

Olivia can be redeemed. Her life can be saved from that error. Remember, I told you we are on a new path? So far...... so good. Like anything, we still have those bad days.....but the bad aren't as bad as they used to be. More on this later.

Happy Birthday Baby Girl. Here's to a new decade.....to restored Hope in the One who Redeems us from the wreckage.....who Restores us with True Wisdom and Truth. The One who has set us on a new path void of fear, ignorance and intimidation.


I feel I've reaped the benefit from "Praising Him In The Storm". On to a new skill.......Learning how to tell my heart to beat again. Teaching Olivia to allow hers to do the same.




"Tell Your Heart To Beat Again" Danny Gokey


"You're shattered - Like you've never been before
The life you knew - In a thousand pieces on the floor
And words fall short in times like these - When this world drives you to your knees
You think you're never gonna get back - To the you that used to be

Tell your heart to beat again - Close your eyes and breathe it in
Let the shadows fall away - Step into the light of grace
Yesterday's a closing door - You don't live there anymore
Say goodbye to where you've been - And tell your heart to beat again

 Beginning --- Just let that word wash over you
It's alright now ----Love's healing hands have pulled you through
So get back up, take step one --- Leave the darkness, feel the sun
'Cause your story's far from over --- And your journey's just begun

 xo









Posted by at 2 comments:

Tuesday, September 4, 2018

Back to School - 2018!!!!

I am so encouraged that Olivia is strong enough to go back to school!!! it was a busy summer rehabbing this beauty! You can read about it here:


http://www.restoringolivia.com/2018/08/rehabbing-and-rebuilding-me-myself.html


Thank you for all the powerful prayers for her recovery this summer - we felt your love. Even if we have a long way to go, I'm incredibly thankful for every "mini" step forward.

She definitely looks irritated here because I missed getting a picture this morning and tried to get one after school but the rain started pouring down!





xo
Posted by at No comments:
Subscribe to: Posts (Atom)