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.

Monday, March 5, 2018

The Perfect Storm

What a stormy 6 weeks it has been. Unfortunately, we are still here. We've moved rooms a couple times but the overall scenery is still the same. Sterile. The nights can be long, but these amazing nurses do what they can to keep me comfortable.

I've been thinking about the comparison of this extended hospital season to a storm for quite a while now. How perfect of an analogy is that?

A common definition of the phrase "Perfect Storm" is "a combination of events which are not individually dangerous, but occurring together produce a disastrous outcome."

Yep. Our stay in a nutshell. Olivia's inability to tell me what was actually going on in her mouth, the bad reactions to medications resulting in a systemic trigger in her little body and her inability to clear the resulting chemicals from her system = 7/8 week extended sleepover. (sigh)

The doctors were/are stumped. No one wanted to believe the inevitable diagnosis -- a medication reaction. Each week new tests have been ordered to rule out the "new disease" of the week, all as I sweated through waiting for the results, time after time. I'm so thankful that everything tested has come back negative or normal. I've compiled a list for your perusal:

I am thankful that I now know that......... she is not pregnant.....she does not have HIV, Tuberculosis, Epstein Barr, Cytomegalovirus, A major bone infection, any autoimmune diseases, Leukemia, Lymphoma, Herpes HHV6 or 7, Shingles, Liver disease, other infections from other countries, Diabetes, VCV-PCR, TB1 or 2, Mitogen Minus, Thyroid disease, Gallstones, Mycelial or Major Immune System Disorder.

We have that going for us🙏🏼

I can say that as time has gone by, the fevers are slowly dissipating! Yay! Her high lipase and liver functioning tests have finally returned to normal. She is weak and is still having some trouble as we wean her off a medication that she unfortunately became dependent on during this hospital stay. Hypersensitive people may be able to relate. Withdrawal is brutal.

Although we remain at the tail end of this internal storm, I was able to venture out a bit on Saturday for a long walk up the steep hill that happens to be steps away from the hospital entrance. Besides the fact that I'm now suddenly out of shape, the trek up was invigorating and worthwhile. As I crested the top of the hill, I was greeted by gorgeous vintage mansions in their full antiquated glory as seasoned runners sped past me in a flash.

Drinking it all in....the scenery, the fresh smell of spring (well, kinda spring)... I started to notice the runners up ahead of me coming to a dead stop as they carefully crossed what looked like lighter spots on the sidewalk. As I got closer I realized the deception that stopped them dead in their tracks. Water on top....ice underneath...snow on the sides...... intermittently dispersed across their path. Dangerous, irritating and deceptive as they had previously sailed along listening to their favorite music with their headphones.

I couldn't help but realize that what I was witnessing was a perfect parallel of my life these last 18 years. I mean, really.....It started out so beautiful. I was sailing along. I was married to the love of my life, had a baby boy.....then a girl. We were set.

Of course, we all have our paths coated with a little ice or water,  glazing on top or deceptively hidden beneath, causing us to temporarily stop and be forced to figure out how to best get across to the other side where our soles (or would that be souls?) are safe and grounded. We then pick up our original pace. It's all good again. My journey, on the other hand, started out this way and eventually ended up like the eternal winter Elsa from the movie Frozen started as her "shit hit the fan" (pardon my french). Icy. Stormy. Blinding blizzard of confusion. Fear. Loss of control. Endless cold. Forgotten dry patches that were perfect for nonslip soles.

Here's where it gets good. I finally feel like it's thawing. It's melting. My sole's (or soul) is secure on dry ground....not slipping and sliding...with no more tall mounds of snow on each side to force a dangerous fall filled with slipping and sliding.

This hospital stay has fleshed out a couple major things that have probably contributed to Olivia's lack of recovery in the last couple years. Abscess's contain a major infection and quite literally a daily drain on her already compromised immune system. The energy used to keep that infection walled off from the rest of the body is exhausting. The fact that she never had a fever to indicate it was there is somewhat remarkable, but for Olivia's journey it's the frosting on the cake.

The wisdom teeth. Yes, they are still there. This surgery will be done at a future time, after she's recovered, gained weight and regained her appetite and strength back. Frustrating, but storm worthy.

I began searching the bible for storm related scripture. I absolutely love Isaiah 54:11 - the scripture I used in the storm picture.

"O afflicted one, storm-tossed, and not comforted, 
Behold, I will set your stones in antimony, 
And your foundations I will lay in sapphires. Isaiah 54:11

I love reading biblical commentaries that dive deep into scripture to give a broader meaning. This one is so good. Isaiah 54 is talking about God's assurance of restoration and renewal of the city of Jerusalem, future blessings for the people of God.  Jerusalem will exceed what she had before, His mercy, new beginnings. The nation will be restored to it's original purpose.

While reading these interpretations, goosebumps appeared as a faint whispering tugged at my ear, for Jerusalem/Olivia or anyone else looking for a set of words that can open up possibilities. Yes, the storms have been tough. Afflicted, and not comforted play a role in what have felt like an "eternal winter".  What's amazing is that He sets our stones in antimony.........which happens to be a compound used for fireproofing. Fireproofed for a calling or a purpose whether big or small, it's everlasting. Additional strength for a calling to never give up on her.

Looking for that cure for her. I will never stop unless I'm directed elsewhere. What do I have to lose? This journey and what I have learned has opened my eyes to the detour we blindly took, and I'm just removing the blindfold. That's all.

As I look into the light sapphire blue eyes of my courageous warrior, I feel compelled to conclude what many commentaries have written......that Sapphire is the hue of heaven.❤️

She's getting better everyday. It may be baby steps, but we are moving forward. Thank you for the prayers.