Friday, September 25, 2020

Racing After Mary

 It's a helpless feeling.

Laying in bed with little girl next to me.

2:00 am and her body jerks.

Just one time but I knew then.

I knew that status was coming.

I rolled over and snuggled next to her. Wishing I was wrong.

Hoping. 

I was not wrong.

Two hours later it hit.

There was nothing I could do. We gave rescue as fast as we could but it was a bad one. 

That was last Saturday.

This morning again. Status. It took two rounds of rescue meds to pull her out.

If that was the whole story it would be bleak and sad.

But it's not the entire story.

Over the last 4 months little girl has turned a corner on day seizures.

To the point where there are some days when  you could count on one hand how many drops she had.

She wears her helmet to school but at home sometimes we can get away with just a headband.

She has occasional bad days. But most days she's beating the beast!

The middle of the night ones are outside of our control. She goes fast and we just race after her. 

The early mornings - each and every morning - that's where the real battle happens.

As soon as she moves we move. Getting in her CBD oil (prescription and extra) is our first line of defense. Between 5-6 am. It has a calming effect and will often relax her and let her sleep for a few more minutes. When she starts moving again we run - get her in the bathroom. Her system needs to clean out. It's a huge trigger.

Then downstairs. Normally she's out of it. Barely functioning. Seizure clusters washing over her. Her seizure pill is next. Getting her to swallow. Holding our breath. Swallow Mary. Swallow. Sips of Zevia. Yes we give her soda in the morning. It helps. It's all natural and tastes nasty. She loves it.

Then breakfast. With chocolate. It too is nasty. 90% but she devours it and we are realizing it too helps.

Each swallow a victory. Her one eye 'blown.' We watch it carefully. It's our tell. When it starts to focus with the other eye we start to breath.

She smiles. Her sassy mouth starts going. She's back on-line and dancing and singing.

Another morning won.

More and more we are winning.

Not always. Once a week or so we lose. Status like this morning hits. Or we lose her at breakfast time.

But not as much. And she's conquering the day seizures.

How? Why? 

We have no blazing idea but we have theories.

  • We removed all artificial everything. Only natural.
  • We stopped giving her cream - this wasn't intentional but she was fighting it so we switched to giving her straight oil for her fat 
  • She gets chocolate. Just about in every meal. Go figure.
  • We push fluids. Starting with Zevia in the morning, water all day and herbal tea
  • Her VNS is working at full tilt - it's been a year and a half since she had that surgery and it's doing what it is supposed to do...
  • Her CBD oil and the extra we give her is making a huge difference...
  • She is on one seizure med -  Banzel - which works on the drops. It has no behavior side effects (Praise the Lord) so we don't mind giving it to her
  • The Keto diet is our best and best defense. When she was tanking last winter the conventional wisdom was - her diet isn't working so let's get her off. My gut said no. It is the BEST defense for children with Doose Syndrome and I was not going to quit after two years knowing that if we quit, then our only option was surgery (separating the two sides of her brain) or more epilepsy drugs which do not work for her. So we did what seemed nuts. We increased her ratio instead of decreasing it. They went along because ... well... we have nothing to lose with Mary. And she breaks every other rule - why not this one! At first it was a disaster. At first she tanked and we worried we had made a mistake. But then slowly - oh so slowly - she started improving. Her day seizures slowly slowly decreasing. We have been holding our breath for months and months thinking it was just a phase and she would eventually break through but she is holding steady. Just nighttime and mornings do we battle. 
We don't know what is working and we don't care. We just know that she's better. 

We figure it is the full combination of everything.

It's helping us beat the beast.

Not counting this morning. Not counting Saturday.

We wish we could free her of the night and morning trauma. 

But we love watching her dancing and singing through her days without constantly falling and seizing.

We love that her language has exploded.

We love that her brain has days where it is wide open - not having to deal with the on again off again which happens with constant seizures.

We love this season with Mary and we are praying our hearts out that it only just keeps getting better!

13 comments:

  1. So glad to hear an update! Every time Glory has a seizure at night, I think of you. I picture you holding your breath as I do...waiting for relief to come. Praising the Lord for the breakthrough! ❤️

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  2. Beautiful smile. We love your helmet! <3 the Jackson's.

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  3. Thank you for sharing!!! Oh, I hope for a chance to get to know her better! Praise God for the breaks and praise God for being with her in the falls. May His power and comfort fill your hearts each day. Much love. - c

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  4. Praise Jehovah Rapha, loved reading this update. God is good! praying for your family.

    Erika

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  5. This is just the best news ever!

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  6. I have tears of joy hearing how she is making such progress throughout the day and seeing pictures of her beautiful smile! Also shed were tears for Mary and the rest of your family as you race around trying to do everything in your power to calm the store of seizures. Thank you for sharing a personal glimpse in your day, sending tons of prayers for continued progress towards less seizures!!

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  7. So glad to read this report, Julie!! Still will keep praying!

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  8. This is great news! I was getting quite worried about your guys and would pray when I checked for an update... just a stranger in a different land but thankful prayers have no boundary! Mary has a beautiful smile!!

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  9. Oh, what a "yes" answer to prayer! We get plenty of "no" answers in life--and i try to remind myself to keep faith then as well--but getting the "yes" answers buoys me up with confidence we need that there really is a God. And what a miracle for your entire family! Mary is still in my prayers, now and forever.

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  10. So happy for an update. I'm glad to hear that you have been able to figure out some of the answers for Mary. Although I don't know you, I think of you often and of your great love and commitment to your children--all the time, energy and love you and hubby devote to giving them each, from the biggest to the smallest, the things they need to grow and prosper. -- MayLynne

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  11. Praying with you!!! Thanks a lot for the update! Hugs to all

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  12. Happy to read this good news - and hoping and praying for even better news in the days ahead. Mary is absolutely glowing in the last few photos - glad her light is shining so brightly!

    Susan in Kentucky

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  13. Thank you for the update. I'm so glad there are improvements.
    Sue

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Loving words from kind people make our hearts glad!