6/29

6/29

Trust… 

It is a theme that our family has lived by.  It is a word that has tried us over these nearly 15 years of marriage.  It is an action word that has literally left us gasping for air as if time were running out and we are about to sink under the seemingly towering waves.  It is a word that this very night, one year ago, that I had to say with great sobs and fear.  Many of you were with us this time a year ago.  You checked in on the Foxhole knowing that something wasn’t right.

At exactly 3:09 AM on 6/29/17 Princess awoke stuck in a convulsive state.  Earlier, the night before,  we battled minute by minute with hallucinations.  The routine was she would try to get out of bed, have a seizure, back in bed, lay down, and then back up again.  This went on and on till I guess she somehow tired herself or God provided a break for what was about to come…

Stuck in a convulsive state, I took care of my Wife for Life, thinking this will end….I mean all the other seizures stop after 2 minutes or so…  10 minutes bore on and I was calling 911 for the first time in 12 years of dealing with this affliction.  3 hours later, after an ambulance ride to the hospital and the ER scrambling to stop the convulsions we made the decision to put Princess into a coma and on a ventilator. 

Trust...

My words I don’t think can even begin to describe that night or even the next 30 days, but it was God that pulled us through.  It is surreal to think that just one year ago that I nearly lost my wife.  Critter nearly lost her mother.  A mother nearly lost a child.  This world would lose one more amazing, gifted, talented person.

Trust...

Many of you followed our journey closely and were instrumental in your support for us in that greatest time of need.  And while the Foxhole has seemingly gone silent since then, you have continued to check in.  Since July of last year we have experienced some amazing growth and improvements for Princess, followed by brief setbacks, and then again, some amazing successes. 

As many know, Princess is continuing her use of CBD (Hemp Oil) to treat her seizures.  It has truly been life giving and has provided so much for her.  Reduction of seizures, protection of her brain, opportunity to be a mom, opportunity to be a wife.

It has also allowed her to significantly reduce her pharmaceuticals that have never really controlled her seizures.  While the CBD has been very promising, you may recall that our research has led us to believe that Princess’ hospitalization and convulsions last year were due to an extreme drop of her sodium levels brought on by her tapering of one of her AED’s, Onfi (Clobazam- a benzodiazepine).  The problem, the drug was really the lowest we could get it, and despite the Pharmaceutical Manufacturer’s claim that you can just stop taking the medicine based upon the dose we were at, the claim is just simply not true. 

Since last year, Princess has made huge strides.  For example, she officially was off the support of a walker in November to move around.  While balance can still be an issue at times, it is nice to be able to be more free of any devices or assistance to just get through the house or even to do a quick errand.  More frequent outings for her have also been a blessing and given her some freedom from the confines of home.   

During this time, we did experience several days and weeks with no seizures.  After some stability and nearly a month of seizure-free days, we felt confident that Princess could resume her taper (this especially after the hospitalization had increased one of her drugs by nearly 500%).  So our work began again to put our trust in the Lord and His provision of CBD and that for us, Princess continuing to be on the pharmaceuticals was not an option.  Through the help of a Compounding Pharmacy and an amazing Pharmacist, Princess today is 99% off of the aforementioned increased drug, and is now 96% off of Onfi.  Next Wednesday, July 4^th will be a special day as Princess will be off of one of her two anti-seizure pharmaceuticals and another victory for a simple plant.  While certainly the months since then have not been great, we have seen Princess generally experience 20 to 28 seizures per month. However, as she is nearing the end of one of her drugs, her body has had immense withdrawals in the form of seizures and even some setbacks and has totaled nearly 50 seizures this month alone!

Memory is still an ongoing issue and even events of yesterday are hard to recall.  And for us still, is the call to Trust. 

So as I close this entry tonight, my mind is flooded by so much from last year.  But, praise Jesus.  Princess is here.  She is amazing and I am truly blessed to have her as my Wife for Life. 

Trust in the Lord with ALL your heart; do not lean on your own understanding.  In all your ways, acknowledge Him, and He will direct your paths.  Proverbs 3:5-6

Please pray:

• Princess will do well coming off of her Pharmaceuticals and this this next week she will be able to celebrate a great victory in being able to come off of 1 of her 2 pharmaceuticals
• With one pharmaceutical remaining, the wisdom and guidance in reducing the medicine (it will be a 1 year taper!!!)
• Wisdom in timing and whether to increase the CBD
• Princess’ ability to create memories and to have many more consecutive days without a seizure