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?
Wednesday, November 6, 2019
Update on Olivia ❤️
Wednesday, September 18, 2019
Happy 21st Birthday Olivia!!!😘❤️😘
xo
Kelly
Tuesday, September 3, 2019
First Day of School!
I am so extremely thankful for our extremely busy summer. So much good is going on......so much straightening out to this long, curvy, crooked journey we've been on for too many years.
I have been making changes, following a new script....
She's getting stronger, and most important of all, the seizures are decreasing like never before. I need to cross my fingers and hold my breath as I share encouraging news that she had 10 full days with absolutely NO seizures!
EEK!
Looking forward to this upcoming year.....
xo
Kelly
Sunday, July 14, 2019
Five steps up.....two steps back
Sitting here, thinking about this update I wanted to give you on Olivia and the same song played over and over in my mind. "One step Up" by Bruce Springsteen. Do any of you remember it? Not sure why it was on "repeat" in my head, I haven't heard it in years. I went with the teaser and looked it up and listened. Beautifully raw lyrics about a marriage falling apart....no matter what they did, the one step up was completely devoured by the inevitable two steps back. Timeless pain.
Maybe it was swirling in my head because I've been thinking about Olivia's journey so far this year. Initially, it was so hard to keep up. For us, it was one step up and one step back, kind of status quo for a period of time, leaving me to wonder if I'd ever get my girl back from the last horrific hospital stay. Was the damage just too much for her tiny little body? Just then a humbling whisper reminded me of an earlier time Bruce's famous song title became her life. Beginning in 2013, the backward steps in her health came at such an astounding rate, she was in a downward, backward, free fall spiral that seemed like would never stop. The only recognizable step forward seemed to be in my faith that the spiral could stop, that her health could be recovered, and that she could get her life back. I buried my head in research. I fell to my knees for wisdom. I clung to God's word and scriptures that told of of a different path, of a different story.
Like this one:
I've been blind----sided by what has happened with my girl. Taken down so many known, familiar paths that have lead us into darkness. It has been beyond rough. Like Bruce says in his song, "we've given each other some hard lessons lately, but we ain't learnin', we're the same sad story that's a fact". But this line resonates deeper, "another battle in our dirty little war". It's been a war, and we had been losing, one battle at a time.
I'm on this new path now. The better One from above. A new, unfamiliar path guided solely by Him, and, by gosh, it seems to be working. The light is peering in, the rough places less rocky and easier to navigate. Not smooth yet, by any means, but less rough for certain.
This past week some big steps were taken! After 16 months of sleeping in our main floor office, Olivia's bed has been moved back into her bedroom!!!
I'd say this is actually 15 steps, since that is how many steps we have to get to the second floor bedrooms, which she has to do 2 x/day now. Of course she needs assistance, but 16 months ago this was an impossibility......it's now a reality.
Second big step was getting her out of the house and attending the local parade, which happened to include her younger sister. We had a rough start to the early evening with a seizure that left her tired, in addition to a cut above her eye, but she rebounded and we were able to go and watch Olivia's younger sister participate in the parade.
Not perfect, but we went.
It worked.
It's a start.
I believe it's only going to get smoother.
Praying for the "5 steps up, 2 steps back" to morph into "10 steps up, 1 step back", and so on and so forth.
Being on the right path makes all the difference.
xo
Kelly
Friday, June 7, 2019
Autism One 2019 - RFK Jr. Quote Video
xo
Kelly
Thursday, June 6, 2019
Thankful for a stronger girl at the end of the school year
Olivia and I are looking forward to a busy summer of rehabbing! This verse has been on my mind lately for so many reasons.
Driving home from an appointment yesterday, I had to take this video of Olivia:
As I looked over to her, I realized how far she has come this school year.
She is sitting up.....on her own. She looks relaxed and interested in the cool wind blowing her beautiful blonde ponytail around. She appears more in control, a tiny bit closer to the life that should have been hers....one of independence...one of new experiences and intellectual growth.
Milestone days are always the hardest days, and sometimes I sink back into "what should've been" land.
Just being honest.
I had an interesting talk with a friend who has had tough times and gets stuck in "what should've been" land. Although I do visit (more frequently lately), I never want to stay and establish roots there....visiting is hard enough.
Often times, I'm there with my friend and we discuss my hope in Olivia's healing and the fact that it's my faith that leads me away from that darkened place. Without fail, I'm always challenged with the questions raised by my friend's breaking heart. Questions like:
"If God was going to heal her, why hasn't he done it yet?" Invariably, I defend. I argue. My main point always being that I have free will, and because she is my child, I have always made her life's decisions for her and some of those decisions caused her harm, even though my decisions were predicated by a set of guidelines I was told I must follow. I continued....How can God heal her if I'm always giving in to the doctors, to the medicine, to the things that always seem to damage her health? In the past, I've been forced to make decisions based on fear that is fed to me by the experts, and she always ends up worse....not better.
I'm sure you've heard me talk about this before. It's maddening.
But, then, my friend threw me a loophole by further challenging....."Yeah, I can see that, but why does it even matter? You always talk of God's power & might, so even if you are making all sorts of 'free will bad decisions', He could still do it.............if He wanted to."
How can you argue that point? It's true. He could do it under any circumstances, and sometimes He chooses not to heal.
So there I sat. Confronted with a reality that many, many people experience. I could feel the roots taking hold.
Just then I remembered a scripture from a bible study I did a while back --
"Do not give dogs what is sacred; do not throw your pearls to pigs. If you do, they may trample them under their feet, and then turn and tear you to pieces". Matthew 7:6
God has built me up. He has grown my faith and planted my feet on His sturdy foundation. This doubt is too destructive for me to entertain...even in the slightest way. I've learned to persist, and to pursue God. Others may try and give up. That doesn't have to be my story.
Our story is the next two verses:
"Ask and it will be given to you, seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." Matthew 7:7-8
I am always learning, always reaching, always trying to find what I can do to help my girl. That is not stopping. I figure, God can always do something with what I learn, what Olivia learns and any progress for my precious girl is worth trying to move mountains.
Here's to an amazing summer of continued seeking, knocking and leaning into His Word, and His plan for Olivia's life. I continue to remind myself that He is the Author, not only of my faith, but of her precious life! He will bring down the story He has written for her from Heaven. In His Perfect Timing!! Just you wait!!
xo
Kelly
Friday, May 24, 2019
Hey there!
It’s been a while, I know. My time and energy have been monopolized not only with Olivia’s Rehabbing, but with my in-law's estate. I’m finally seeing a light at the end of the tunnel. For those who have lost their parents, one shortly after the other, you probably can relate.....
The estate sale is done and it’s time for me to get back to the thing I love most.....writing♥️
Xo...
Kelly