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, August 12, 2018

Rehabbing and Rebuilding - Me, Myself, & Olivia (And O's amazing PCA Gisell)

It's been a busy summer! Rehabbing and rebuilding my girl.

Although rehabbing Olivia's weak post-hospital body should be a priority, the "experts" see it differently. Olivia was discharged prematurely from the in-home physical therapy....... just... "because".  New guidelines and stricter ideals from higher up's deemed her ability to recover in their timeline impossible (especially with that ever so important diagnosis)....so, therefore, she was done in May.

You all know me be now.....you know I'm not the type to give up easily. I contacted outpatient facilities in hope to get her additional therapy.....even just one day a week.....I was successful, at the end of September.


This, my friends, is the life of a handicapped individual, and their caregivers. Experts give up, but we believers don't. We are pushed outside ourselves.... beyond ourselves as we learn and research and become just about what these experts are......without the initials behind our names (I, unfortunately,   do not have money for that). We teach ourselves.  We read the science. We adapt and learn about nutrition, biology and chemistry in relation to the human body, especially a damaged one. We dive into therapies, both physical and developmental. We become an expert.....THE expert on our child....doctorate level expertise that sadly carries no weight or worth. More on worthlessness later.

This summer I became Olivia's physical therapist and it was quite the job! When the in-home therapy folks left, I was still relying on the Hoyer lift to get her up from any position. She hardly had the strength to lift her head, let alone balance herself in a sitting position or walk. Her left arm had just become a tad bit functional again (her left arm was injured in the hospital.....she was unable to move it. It literally hung to her side.)

It was overwhelming. Tasks took double the time to complete. It was exhausting to move her, dress her, feed her and clean her. She always looked at me so sad.....like she was thinking..."It's not worth it Momma. I'm not worth it." Those looks were always so heartbreaking for me. I know she's in there. I know she understands, she just can't tell me. Her body was so exhausted. Void of energy.  Each and every day, I whispered these 3 words....."You're worth it"......"please believe that you're worth it."

Last week a friend detailed an encounter she had with her specialist doctor. She experienced some side effects from a new medication that became debilitating and contacted the physician with concern. Her physician confirmed that it wasn't a side effect of the medication and that it was just a coincidence. It clearly wasn't a coincidence for my friend. She stopped the medication and the side effect went away, but even this did not convince the physician. My friend's opinion about her own observations of something negatively affecting her body was "worthless" to this expert.

Ugh - this bugs me. All I could do was think of my poor girl and how the many medications have been prescribed and doubled with terrible side effects that almost took her life, and the experts didn't even bat an eye. Her misery did not matter....especially because she could not tell them how bad her body hurt. How worthless do you think Olivia has felt throughout the years? No voice=No opinion. No opinion= No boundaries. No personal boundaries= worthlessness.

And that's where I come in. I'm her voice. I give her an opinion. I give her boundaries. She becomes worthy......of life. Of personal safety. Of respect and most importantly......dignity.

Just tonight while writing about Olivia's rehabbing, a different word kept popping into my head. Rahab. I remembered reading about Rahab briefly when I did a Joshua study but was intrigued to look into her story a bit more. No coincidences here.

Rahab was a prostitute who lived in Jericho, the first major city the Israelites would meet as they crossed over into the promise land. Her "calling"? To hide two Israelite spies who took refuge in her brothel as they stalked the city for intel information for Joshua. She heard the stories of their God. She knew what she was doing was dangerous, but she took the risk because she sensed that the God they trusted was worth trusting. She was worthless to her community, and let's just reach a bit to conclude that she felt a bit of worthlessness deep down with the choice of her profession. Because of her faith, she was willing to help others despite what could have been a great cost to herself.

Here's my point. God works through people like Rahab. Imperfect, rejected & worthless. Rahab rose above her life situation by trusting God and pulling through on an important assignment specifically assigned to her. Believing in His protection instead of groveling in selfishness and disbelief.

By faith Rahab the prostitute did not perish with those who were disobedient, because she had given a friendly welcome to the spies. Hebrews 11:31 ESV

Rehab.......Rahab. Rising above the naysayers. Rising above the experts and trusting the true Expert with each "assignment" tossed our way. Rahab's life was changed from this experience. I've been changed.....Olivia's is changing, even if it's slow.

It's the end of the summer and Olivia has made some great strides. She is eating better. She is sitting up on her own. She has started walking with support. Last Friday, our rented Hoyer lift was picked up and taken away. Each and every day I see that worthless label melt away......the sad face doesn't dominate her day as it once did. Her cute little smile and giggle have replaced the sadness. I think she's going to be ok.

Here's a video summarizing our summer.....this post.....with a message for all of us.

You're going to be ok.



  1. You are an amazing mom and Olivia is so blessed to have you and she knows it. Your journey is unimaginably harder than anyone's should ever be but your Faith is harder and stronger because of every step you take together forward and even back some days.

  2. Thank you for sharing this Kelly. Once again, your powerful words and video touch and inspire me deeply. God bless and take care...