Wednesday, March 27, 2019

Little Bursts of Spring in the Longest Winter

We expected her to tank in South Carolina. We had a bagful of rescue meds and  back up rescue meds and were prepared for the worst.

Lack of sleep, change of routine, traveling are all triggers.

We braced ourselves for a torrent of seizures in the early mornings.

We waited.

We held our breath.

Little girl made it through the entire trip without one status episode.

Not until Sunday night when she dropped exhausted in the bed did her little body go into revolt and she slipped into status.

It was the longest stretch we have had in many many months.

5 mornings in a row without status.


She still had seizures. Many many seizures. 


We are seeing some signs.

Little bursts of spring popping up in the midst of a very long winter.

Her seizures are still many, but some are not as severe.

She's not dropping as hard or as often.

She's more alert.

She's more talkative.

Tiny steps. Miniscule.

Bringing hope.

Yet winter still hovers. The winds blow in often reminding us that we have still have a ways to go. 

We are wary but hopeful.

What's changed? What is causing the sun to start shining?

A multitude of possibilities and no one good reason.

Last year at this time we started the Ketogenic diet. She did amazingly well to the point where she went helmetless for 6 weeks. Then her Ketone levels started rising beyond what was good for her. Her seizures came back and she started the non-stop status episodes. It took a long time for us to point to the high ketones as the possible culprit. When we did we started lowering her ratio. Not typical protocol but for Mary nothing we do is typical. In the last month her ketone levels are back down to where they were when she was at her best. Lower ketones could be the reason she is doing better.

In December she had the VNS implant installed. Over the course of the last few months it has slowly been increased. Her VNS could be the reason she is doing better.

In December, when she was at her worst and we were in despair mode, our doctor requested for Mary to be given Epidiolex: a legal, doctor prescribed, medical marijuana that is only given to those with severe epilepsy in specific categories. She doesn't fit the categories but her case is so severe that after a desperate appeal by our doctor, she was approved. So in January we started Mary on Epidiolex.

Over the last few months we have been slowly, slowly upping her dose. The last increase was about 10 days ago. 

Keto Diet. VNS. Epidiolex.

All three excellent reasons why little bursts of spring have appeared.

It would be nice to know which one is making a difference but honestly - it doesn't matter. We are just grateful for the tiny steps forward we are seeing.

Tiny steps.

We aren't holding our breath.

We have experienced spring before and been smacked down hard by winter so we are not throwing a party or counting our chickens and eggs. 

But we are praying and we are hopeful and we are grateful for every single tiny bit of green that we can see in the midst of this longest winter!

Tomorrow I head out again for another convention (Teach Them Diligently, Nashville, TN). Rob is staying home with the three littles. I will be praying hard that he will have a peaceful, status-free 3 1/2 days while I am gone. I know he is praying too!


  1. Tiny snowdrops pushing their little heads above the I read your account, that's the image that came to mind. I hope Mary's spring will bring more blossoms as it progresses, with a fruitful summer to follow!

    Enjoy Nashville - it's beautiful there at this time of the year.

    Hugs to everyone,
    Susan in Kentucky

  2. My heart is singing as I'm reading your lines. :) :) I won't stop praying for you, guys!

  3. Praying it continues and you can find out what it is and keep doing it! We're getting ready to go through a LEAP protocol food sensitivity testing to try and deal with my daughter's daily migraines and seizures is on the list of things that can be aggravated by a food sensitivity. You might want to try that for another piece of the puzzle. I hope you find the answers for your beautiful girl!

  4. I love love love your new photos!

  5. Today's my Pray-for-Mary day! Checking in and am so grateful to see there have been some rays of light. Love to all of you from Maryland!

  6. Continuing to pray for Mary, morning and evening. Always on my heart.


Loving words from kind people make our hearts glad!