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, December 31, 2015

So long 2015! You began with the "worst of times", but ended with the beginning of the "best of times"!

I know. I know. I switched up the famous Tales of Two Cities opening sentence -- at least the first portion. The original begins with the "best of", but that would not apply to Olivia's 2015. I haven't read that famous book for years.....high school?......college? I pulled it up on my computer and as I started reading the first sentence, the first paragraph.... the tears started streaming down my face. Take a look:

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way–in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only." Tale of Two Cities

 Most can and do relate to these words sometime in their lives. But this.....this defines our year. The year started off tough and became worse, but then became good.  July 1st marked an "epoch of belief", or the beginning of a distinctive change for Olivia's 15 year struggle with uncontrolled seizures with the legalization of Medicinal Cannabis. But, then she had her dips, seizure cycles would return and unbelief would sweep in like a thief in the night. Her year was filled with darkness, and then Light.....brimming with despair, then off set by Hope. The wisdom taught made the foolishness that much more foolish.

I love one commentator's interpretation of this powerful sentence. He says "these famous lines hint at the novel's central tension between love and family, on the one hand, and oppression and hatred, on the other. The passage makes marked use of anaphora which suggests that good and evil, wisdom and folly, and light and darkness stand equally matched in their struggle." Chronic illness. Chronic pain. Chronic suffering encompasses it all. It causes tension among the sufferer's family. It can destroy love. It can cause hatred. But then, in walks Love.

This year was really about holding on. Holding on to a hope and dream that her suffering could come to an end - either here on earth with a healing, or in heaven. I winced each time I read Proverbs 13:12 "Hope deferred makes the heart sick, but a desire fulfilled is a tree of life" because I knew that was a path my heart was heading. When I felt myself going this way, holding on to my desire for her suffering to end became the priority, knowing I needed His help to focus on it.

Soon, I began playing Jaime Grace's "Holding On" song over and over until the truth was embedded in my heart. Words like:

I just keep holding on to what I believe
Oh, I believe in you
Give me the strength to fight
And the heart to believe
When it’s hard to believe in you


Oh and these are the times when doubt’s tryin’ to creep in
And I need a reason that’s larger than life when hope seems hard to find
If only I can fight just a little longer
I know it’s gonna make me stronger

_______________


Pictures and videos are worth a thousand words. I thought I would post some from the beginning of the year to the end to show the incredible progress Olivia has made -- mainly since September of this year. She has a long way to go, but at least things are finally going in the right direction.












At the beginning of the year she could not sit up by herself.




Walking up and down the stairs became a challenge:





Some days she would have smaller seizures throughout the day.






She was so weak at times she could hardly eat.




But, then, her miracle began:


She started getting stronger:




Started drinking by herself:




And, most recently has started using a spoon again:





So.....so long 2015. I am thankful for the important changes you offered like Olivia gaining 12 pounds, smiling more, purposeful actions and reactions like putting her arms through her shirt armholes, pulling me over to the TV so I will turn it on, early stages of feeding herself again, and of course walking on her own. Although she is still is having some seizures, she has longer periods of seizure free days and we are hopeful we will find a therapeutic dose of the Medicinal Cannabis soon. We are ready to move into a new year of hope and further healing. We serve a Big God who encourages us to ask for Big Miracles. I for one am going for a complete healing! Welcome 2016!

Go God!!!!








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