Saturday, August 4, 2018

The Beast - Round Two

Little toothless girl in her twirly new Matryoshka Doll dress!
 
 
Don't be fooled...
 
 
Don't let that sweet toothless smile fool you into thinking that all is well here in our little house on the hill.

 
 
It's not peaches and cream for little girl.

 
The Epilepsy Beast is not giving up.
 
I don't even have the words to describe what it is like to watch our littlest do full body falls over and over and over again all day every day.
 
I can't describe the feelings we have when we hold her after she has slammed her helmet-covered head onto some granite and screams for 10 minutes from the pain. How can you protect her when she has the helmet on and still gets hurt???
 
I am beyond the ability to share the utter exhaustion we are feeling trying to keep her contained and safe when she wants to run free.
 
We had 6 weeks where she was free to dance and play without her helmet. Those 6 weeks were right after we started the Keto Diet. They were right after we started CBD oil. We thought we had won the lottery. She still had 30-50 small seizures a day, but the beast was being tamed and we rejoiced.
 
But then the beast reared its ugly head.
 
Over the last 3 months we have watched it slowly gain back the territory we had claimed.
 
We have watched her seizures change from 30-50 small ones a day to 30-50 large ones. We have watched over the last two weeks as those numbers have inched ever higher. 50-60 large ones. Two days ago 100 large ones.
 
We have held her on days when the seizures won't stop and we have to give her rescue drugs.
 
Don't be fooled.
 
That smile - it's fleeting right now. She is frustrated and angry.
 
We are changing drugs around. Removing her last seizure medication as it has been known to interfere with the Keto Diet. Stopping the CBD for a period as it has been known to interfere with the seizure medication. The changes are affecting her mood and sleep.
 
The beast is winning right now.
 
It's winning.
 
But we are not giving up. We are in a season of weaning down a drug that will take several months to stop. We have an amazing doctor and dietician who are fighting this beast with us. We are praying and clinging.
 
 
We love our little toothless wonder. Even when she growls and yells at us. She has brought so much life and joy to our family.
 
We are not going to let the beast win.
 
Epilepsy is not going to have the last word in our house!!
 
Our little one is a fighter and we are fighting right alongside her!
 
 
 
 
 
 


15 comments:

  1. Praying, Julie!! Don't know what else to say..

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  2. And I am praying with you Nalle family. Keep up this fight! May the Lord bless you and protect your beautiful little girl.

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  3. Amen, Julie! Praying for peace & healing.

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  4. she is beautiful,,, hugs to both of u,,,pray they soon find the right meds for her

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  5. Praying for strength and wisdom! I know you won't give up until your daughter gets relief.

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  6. Mary's dress is precious, and so is she. I am so sorry the struggle is increasing, and hope that the new measures will be effective.

    Just seems so unfair, doesn't it? No need to tell you all to "hang in there", of course, since you're already doing it, so tenaciously that success WILL occur and the right treatment WILL be found. Meanwhile, hugs and prayers to and for everyone...

    Susan in Kentucky

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  7. How awful and crazy -- poor child, and poor all of you. Sending much love and light to you and your family.

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  8. I'm praying too.
    tam ON, Canada

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  9. Praying!


    God bless your family!


    Erika

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  10. Praying for God's strength for you as you keep clinging!

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  11. Sending love and strength! We are praying for you!

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  12. I'd love to give you a big hug, Julia. May the Lord magnify His grace, help, and presence to you. xo, Kelly

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  13. I have followed you since you began the journey to bring sweet Mary home. She is beaming, and looks so healthy. I will pray that her seizures relent. I worked as a nurse on a neurologist floor for a long time, and never heard, or observed seizures this devastating.

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  14. Hugs and Prayers!!!!

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Loving words from kind people make our hearts glad!