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, May 24, 2018

Mending....

Thank you so much for the prayers of support and healing for Olivia while she was hospitalized and while we have been at home.

So many things have come to mind over the last eight weeks that I'd like to share. Upon discharge, I was given an incredibly dire prognosis for Olivia's life. This prognosis was detailed in the "Assumptions Can Be Deceiving" post. While in the hospital, she acquired 4 NEW serious conditions:


  1. High Fevers. One doctor said "It would be a miracle if her fevers went away.
  2. Extreme hypertonia. Would never walk again.
  3. Her left arm was floppy and unusable. 
  4. Extreme weakness. No longer able to hold her head up and she could not swallow, so, therefore, could not eat or drink.

I can say one thing......it's been a long eight weeks....but Olivia has made a lot of progress!

First of all, she has not had a fever since she's been home! One miracle down!! The extreme tightness and hypertonia are diminishing every day and she has started using her left arm again. Miracles #'s 2 and 3! The weakness is gradually subsiding. She is able to hold her head up again with returned trunk strength and is completely off the tube feeding and eating/drinking once again. Praise God!

I really wanted to share some of the pictures and video's I've collected over the last 16 weeks  - yes 16 weeks!!!! Looking back on where we've come from, I thought it would be neat to combine them with a song that God has put on my heart since arriving home.



Actually, it just occurred to me why God impressed this video on my heart and it starts with one of my favorite bible verses for Olivia. Psalm 139:13 "For you created my inmost being; you knit me together in my mother's womb," and this incredible song by Matthew West "Mended".

What I realized is that God is the one who "Knits" (Premier Knitter) us together, so, therefore, he must be the Mender. With Olivia, the temporary patches to her fragile and damaged "inmost being", supplied by drugs and other medical interventions have too often worn thin.......with their ineffectiveness and consequential damage. As with this last hospitalization, she ends up worse off. Take a look at how much the drugs ravaged her hair:



See that inch and a half section closest to her scalp. That's her real hair color. That is healthy, undamaged hair pushing out the darkened, broken and thin strands left remaining on her head. She lost so much hair since being home, you would have sworn she had been on cancer drugs. It came out in fist fulls.

If you are familiar with my writing, I often plead for a "Do Over" with Olivia's life, especially the decisions I have made for her. In a sense, I really feel like this is the beginning of that "Do Over" phase. I mean, seriously, it was like I brought home a 19 year old newborn. Her limbs were contracted in a ball, she could not use her arms for anything purposeful, she could not hold her head up and consequently lost a bunch of hair at the back of her head. As she started getting better her coo's and giggles reminded me of that gorgeous little baby I brought home 19 1/2 years ago. Especially since she now has some missing teeth. (ugh) Ok, now I'm getting weepy.

What's important is that the mending has begun and I feel like I have a better understanding of how the vaccines tore a hole in the Perfection she was given. These holes and patches can and will heal because guess what? He can push out the darkness.....the brokenness.....and strengthen the thin strands of faith we mothers of vaccine damaged children cultivate with our experiences. 

Here's to the beginning of this new chapter!❤️

We would love continued prayers for her ability to sit up/get up on her own from a laying/seated position and to be able to walk again and her overall health and vitality at this stage of her restoration.

xo





Sunday, May 13, 2018

Happy Mother's Day!

Happy Mother's Day from Olivia and I❤️

I was reminded of this picture today, and my visit to the Cathedral of St. Paul while Olivia was in the hospital this winter. I stood before this.....mesmerized by the beauty.....and snapped a photo with my phone. A powerful image of THE Mother/Child.


Reproduction of Michelangelo's Pieta at Cathedral of St. Paul

For those not familiar......this is a reproduction of Michelangelo's Pieta sculpture depicting the Virgin Mary cradling her dead son's body, Christ Jesus, after He was removed from the cross on that fateful day.

So many feelings/emotions and lessons hit me with this visit. Not one mother I know can completely identify with the pain she must have endured. As I gazed at her downtrodden face, age-old truths soothed my own grieving heart, which still resided at a local hospital bed just a few miles away.

A mother loves, yes. But more importantly, a mother endures......she sacrifices......she suffers with her baby, no matter the age.......and at some point, she learns to believe in the Sovereignty of her situation......even when it stings. 

I am thinking of all mothers today, but I'm especially thinking of those kindred spirits who have had to become warriors for their children......for those who have had to cradle them while they are having seizures.....praying for them to just stop. To all those mothers who are wrestling with sick children and beating themselves up for making that common decision to vaccinate, only to end up with a child that sits in the corner stimming all day....or banging their head on the wall.....or screaming that familiar high pitched scream......or...... (insert a child's individual heartbreaking symptom). 

I'm thinking of these Momma's and their breaking hearts and I humbly point them upward to the only Hero.....Mary's Son.....the only One who can truly save them and gracefully pull from their hands the responsibility to save. Only He can.



You're my hero
You're the only One
Who is strong enough
You're my hero
You always pick me up
Before I self-destruct (Save Me Steffany Gretzinger)

xo