Hi everyone. Welcome to Olivia's blog. I actually started this blog in January 2012 and subsequently abandoned it in July of that same year when Olivia took a dive for the worst. I decided to resurrect it today as a sort of "Caringbridge" tool because so many amazing people have been reaching out with their support and prayers. Many of you have questions as to what exactly is going on with her. That question has been the journey of a lifetime; unfortunately, not in the good sense of the word.
I have renamed my blog www.restoringolivia.com. I tried to get www.oliviasrecovery.com (the former name) but it was unavailable. The more I thought about it though, the more I felt like it was time for a new beginning. My hope is that God will be restoring her in this new season; a season brimming with new knowledge, new treatment options and new hope.
Recovering and restoring are very similar, but I began thinking of the word recovery differently. I think of "recovery" in relation to recovering from a drug or alcohol addiction, an action of regaining possession of something, or "recovering" a body. It no longer feels right. With 'restore' I feel it's more about God's restoration of ones health. One source defines 'restore' as "to bring back to a state of health, soundness, or vigor", or better yet "to bring back to or put back into a former or original state".
When I googled "God Restores" I knew it was right because this verse popped up and filled my heart with confirmation:
"God, your God, will restore everything you lost; he'll have compassion on you; he'll come back and pick up the pieces from all the places where you were scattered. No matter how far away you end up, God, your God, will get you out of there and bring you back to the land your ancestors once possessed. It will be yours again. He will give you a good life." Deuteronomy 30:3-13 (The Message)
I claim this verse for Olivia.
This blog is intended to document her healing journey as well as my spiritual journey. For those of you who are interested in her story, feel free to read my past postings. This is our story - Olivia & my family. This is what has happened to our lives and in no way do I want to debate the controversial information I talk about throughout my blog. If you don't agree with it or like it you can choose to not read it. It is my family's reality and the story of a Momma fighting for her girl.
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
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.
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.
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A most definite promise our Lord gives to us. A great one for you to claim, for sure.
ReplyDeleteWill be with you in heart and spirit (and in person if you need a coffee break or something!) during your journey!
Jodie