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.
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?
Monday, December 30, 2019
I've made a decision! This year, I'm making DECLARATIONS instead of flimsy resolutions that fizzle out by February.
It's settled. I've decided to finally Go Big - or Go Home.
My younger daughter hung this poster on her bedroom door recently. My mind's eye did a bit of editing:
I pulled out my favorite devotional - Sarah Young's "Jesus Calling" and reread the devotion for January 1st. It goes something like this:
"COME TO ME with a teachable spirit, eager to be changed. A close walk with Me is a life of continual newness. Do not cling to old ways as you step into a new year. Instead, seek My Face with an open mind, knowing that your journey with Me involves being transformed by the renewing of your mind. As you focus your thoughts on Me, be aware that I am fully attentive to you. I see you with a steady eye, because My attention span is infinite I know and understand you completely; My thought embrace you in everlasting love. I also know the plans I have for you: plans to prosper you and not to harm you, plans to give you hope and a future (Jeremiah 29:11). Give yourself fully to this adventure of increasing attentiveness to My Presence.
Unfortunately, last year I skipped reading this. In fact, I couldn't even find this book amongst the chaos of my life. I was in REHAB mode....reading, studying, consulting and devouring any therapeutic reading material I could to recover Olivia from the abyss she had slipped into during her 2018 hospital stay. I focused, and became obsessed with the TERRIBLE and HOPELESS prognosis given to my girl. I wasn't teachable. The only changing I was interested in was to go back and change that fateful hospital stay. My mind was fixed, I lost Him. He knew and saw my flaws. He understands my deep hatred of myself - how I allowed this to happen to my girl. His Presence was drowned out by my completely distracted mind.
Highlights of the Physical Medicine Doctor's Progress Notes 3/20/18
Physical Therapy - "There has been little functional progress noted."
Occupational Therapy - "There has been little functional progress noted."
Speech/Language Pathology - "No interventions in 2 weeks due to limited goals and potential for functional independence 😭
Neuro: "The patient has spastic quadriplegia from a diagnosis of seizures and brain dysfunction. The mother feels that she had a typical child until that child receive the MMR vaccine. In addition, the mother does not feel that her daughter has Lennox-Gastaut Syndrome. This is notable as said disease is chronic and progressive, so that affects how reasonable it is to expect this child to get back to a functional baseline."
"This patient is currently Max-Total Assist for mobility, is non-verbal, has poor expressive/receptive language and requires total assist for ADL's"
See for yourself👇🏻
But....these words, total devastation:
"The mother has stated goals that include her daughter returning to being able to walk, do ADL's (Activities of Daily Living) and feed herself, but this DOES NOT APPEAR TO BE FUNCTIONALLY POSSIBLE OR REASONABLE."
Initiate obsession of 2018/2019. The slowest/fastest years of this journey.
I am so thankful God blessed my efforts. This physical medicine doctor was wrong.
Skills/abilities Olivia regained despite his prognosis:
Complete and normal head control.
Restored ability to sit unassisted.
Restored ability to walk (assisted).
No tube feeding. Restored ability to eat orally.
Olivia is already a miracle! How is it possible that I was able to restore her functioning when the experts said it was impossible? For Olivia, the experts are not experts of her.
2020 is Olivia's year!
January 1, I will be a teachable spirit, eager to be changed. Walking close with Him for a life of continual newness. I kiss my old ways goodbye as I step into this new year. I will seek His face with an open mind, knowing that my journey involves being transformed by the renewing of my mind. I will focus my thoughts on Him, loving that He is fully attentive to me. He knows His plans for my girl. Plans to prosper her, not to harm her. Plans to give us hope, and Olivia a future. Attentiveness to His presence - no distractions.
I'd like to share with you a couple of the declarations I have written for my beautiful girl. Thank you for your prayers for her recovery. I'm looking forward to a new level of restoration in 2020.
May 2020 bless you & your family,