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, 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