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.

Tuesday, April 12, 2016

How does one Rebuild a brain?

Hi ;) it's been awhile, I know. I am sorry. Please forgive me.

Trying hard to do the above. I've also been feeling a bit whiny.......and did not want to ruin your day. But then, I was thinking how the purpose of my blog is to show you the good....and the bad. To be real. To show the vulnerability of living with and loving someone with a chronic medical condition; all while attempting to keep the faith of restoration that was whispered to my heart 16 years ago. Did I mention it's been 16 years?

The subject that has been burning deep within lately is how to rebuild her brain. I know - crazy, right?Not physically....silly; rather, restoring the cognitive regression to enable her to start learning again. Learning like she did before the damage. With this kind of "crazy thinking" going on, other thoughts begin to race through my mind..... expectations, faith, wishful thinking, reality......or do I need a reality check? It's been over 14 years since I heard her sweet little voice say the very last word she spoke......."Bob". As in Bob the Tomato, a VeggieTale leading character. We were watching her favorite episode as we snuggled in the chair, when Bob came on the scene. She looked up at me with those gorgeous blue eyes, pointed with her chubby little toddler hand and whispered "Bob". Last word. The memory fresh - as if it were yesterday.

Truthfully, Olivia continues to do much better, especially when you compare her life today to her life last summer. Things have been pretty consistent for the last couple months. She has three wonderful, seizure free / walking more independently weeks and then BAM, she has a bad week. Isn't it ironic how definitions of "bad" take on a completely different meaning? Presently, "bad" means 1 or 2 seizures a day for a 5-7 day period. Last summer, "bad" really equalled 10-50+ seizures/day everyday for a week, sometimes weeks. Perspective taking is vital - things are much better. But, I want more..... I want her back.

Rebuilding and restoring is a common practice in many senses of the word. In the alternative health care field, rebuilding your immune system is all the rage; restoring mental health through therapy and lifestyle changes is miraculous, and of course, rebuilding and restoring communities after storm destruction is common place. With Olivia's health slowly returning (she has gained 20 pounds), and her nervous system quieting, the concept and hope for this rebuilding process has become center stage. Most think it's unrealistic - even crazy. But what about Martin Pistorius? You know....the author of the best-selling novel Ghostboy? My previous post tells his miraculous story of restoration with an ending no one would have believed was possible.

Restoration is possible and it happens over and over in the lives of people used by God. One such story that I feel relates to our situation with Olivia is Nehemiah's story. Nehemiah was called by God to reconstruct a damaged wall in Jerusalem. His story is made up of intense opposition, resistance and struggle. Metaphorically speaking, it's a story we can sink our teeth into don't you think? I cannot deny the similarities here. Nehemiah’s call was to reconstruct a physical damaged wall. I feel as though I have been called to reconstruct Olivia's damaged immune system.

With every great story, there is the underdog and an enemy. Sanballat was Nehemiah's biggest opponent, and greatest critic. When Sanballat heard that Nehemiah was attempting to rebuild the wall, he became angry and was greatly incensed. He ridiculed him, doubting his ability to complete an impossible task. His criticism screams "Can they bring the stones back to life from those heaps of rubble—burned as they are?" Nehemiah 4:2.

I actually wrote about this rebuilding process for Olivia back in 2014 in my personal journal. Comparing Olivia's situation to Nehemiah's came to mind after hearing a sermon by Shea Strickland (Under Construction - Opposition - Pastor Shea Strickland) at Hosanna. Shea's words reignited my hope that Olivia could get better. That God calls us to impossible tasks. Tasks that we were never meant to do alone. At the time I heard this sermon, Olivia was unable to sit up by herself, had been hospitalized many times, and even came home on a feeding tube because she was so weak. Restoration looked impossible, and the world view of her situation was depressing and definite.

In Shea's words, "Sanballat is a type of character who reminds us of the devil. He discourages Nehemiah. He accuses him. He has a condemning voice. He points out all the things that are wrong about the mission, that there is too much rubble. Sanballat reminds us of the mess we made, constantly reminding us of our failures and tempts us to fall away. Sanballat is trying to distract Nehemiah from what his is doing. Distract him from the mission at hand. He points out everything that is going wrong with what Nehemiah is trying to do. The rubble represents the stuff that happens in our lives because of our own dumb decisions. All of us have messed up."

Olivia's health became a heap of rubble, and sadly most people do not believe in this kind of restoration. Most "Sanballat" characters think they are doing you a favor --- that they are helping you get a grip on reality. We can all mistakenly take this role if we are not careful. Missions get hard, our hearts give up and cry out things like - "we don't want to watch our daughter suffer anymore and we feel like giving up". Sometimes I simply get weary and the "want" to believe is just too hard. I have failed so miserably with trying this and then that, the "rebuilding" of Olivia seems to have stretched out over too many years, with too many twists and turns for the worst. The enemy sees this weariness and uses it. But I know that this darkness cannot overcome the light and the hope these new pieces offer for Olivia and her recovery. Medicinal Cannabis being the first and desperately needed piece.

For me, I have always tried to focus on what Shea says we can get from opposition. Resistance makes us stronger and walking through those hard times develops perseverance. But, I must admit that I have been swayed momentarily by my Sanballat characters because even though I try to not focus on Olivia's health "mess" instead of the "mission", fear sometimes surrounds me and the rubble is all I see. Nehemiah doesn't choose to focus on the mess; he focuses on the mission. He maintains the right perspective even though Sanballat is pointing out the obvious. It is a big pile of mess. He doesn't have much to work with. Still he knows that if He focuses on the faithfulness of God and he focuses on what he was called to do even with the mess, something great can rise out of the ashes. Shea continues to say that "Nehemiah could have chosen to focus on the rubble, and it would have diminished the faithfulness of God in his own eyes. It would have diminished what God had called him to do in his own eyes. We all have the choice to look at our rubble with God's perspective." For me, sometimes the rebuilding seems impossible and with that focus "God's faithfulness diminishes before my eyes". The temptation is to lose heart and walk away from what God is trying to do in our lives, especially in Olivia's. It can be so hard. Sometimes we are unknowingly used by the enemy.

Nehemiah refuses to be discouraged, even when Sanballat enlists others to convince him to abandon his mission. He focuses on the faithfulness of God. He refuses the invitation to go to the Valley of ONO. He rebuilt the wall in 52 days. Wonder just how long it will take to "rebuild" Olivia's fragile system.

Nehemiah had expectations of God. We need expectations to have faith - right? Because faith is more than wishful thinking. My dream was that the Medicinal Cannabis would provide instantaneous results --- and it has to some degree.......but as you have read I want more ----- I want her back, and time will tell if my wants line up with God's will. I'll be writing a lot about patience. It's on my heart.

So, I continue to trust this unseen path that God seems to be straightening more and more over time. Refining my trusting skills. Laura Daigle penned this incredible song about that very subject.- Trust in You.

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see

I’ve tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You’re by my side

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

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