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!

Wednesday, March 20, 2019

Wheelbarrows and Whatnot

When you are 90 years old... the rule of thumb should be... don't wrestle with a wheelbarrow because the wheelbarrow is probably going to win!

Rob and I have been so blessed over the years to have both his mom and my dad living near us.

Dad lives next door and Mom lives about 5 miles away. We see Dad just about every day and Mom about 2-3 times a week. 

Every Wednesday night I cook dinner, we load it into the car and then drive over to Mom's house to share it with her. Our three youngest love going because Gran has a bunch of cool riding toys in the garage and they love racing around on them. She also has a massive yard and satellite TV on a gigantic screen. For our satellite/cable deprived kids... going to Gran's definitely has its perks. 

Last week we headed over with a pot of soup and loaf of homemade banana bread. 

Much to our shock and dismay, an ambulance was parked in her driveway when we arrived.

The wheelbarrow won.

When you are 90, PLEASE... wait for your son to come and help you haul away the sticks you picked up in the yard. Better yet... wait and let your grandchildren pick up the sticks.

Because wheelbarrows are heavy and when you normally use a walker to walk... hauling away a load of sticks with an unwieldy wheelbarrow is not a good idea.

It's just not.

Poor Mom tried so hard to wrestle that wheelbarrow into obedience. Instead it tipped over, pulling her down with it. She came away with a broken arm. It could have been worse. 

She's in rehab for now, longing for home and kicking herself for trying to win against a two wheeled beast.

On Thursday Rob and I are heading for the Great Homeschool Convention in South Carolina. We aren't going alone. Nope. That would have been utter bliss but we can't leave little girl. Instead we will have a noisy van filled with three littles who love traveling and consider going to conventions the highlight of their days. Thankfully one of our amazing caretakers will be traveling with us as extra hands for Mary! 

We already have all of Mary's food weighed and measured (thanks to a sweet friend) which is a huge load off our shoulders. We just have to pull out the meals and serve! How awesome is that!

We are hoping and praying that little girl's seizures are manageable (the roller coaster ride continues) and that the change in schedule doesn't send her into a tailspin. 

Her favorite part of the convention will be discovering that our hotel has a pool. She is going to be in heaven!

The little boys are convention pros. They love helping us set up our booth and enjoy handing out flyers to people. John gets the best responses... people see him with his canes and will cross the aisle to take the flyer from his hands. He's always quite proud of how many flyers he gives out. It's a huge boost for him because he tends to be shy around people.

Aaron has a natural way with people. He makes friends all over the vending hall. He walks around talking to other vendors, flashing his dimples and warming hearts wherever he  goes. I will often have vendors stop by our booth to tell us how much meeting Aaron meant to them. 

Poor Rob's going to be stretched outside of his comfort zone.  I am speaking four times over the three days which means he's going to be minding our booth alone every time I am gone. For a man who is a natural on stage acting and singing, talking to people about our curriculum just about does him in! 

It's going to be a wild, fast, work-focused trip! 

If you homeschool and are going to be in South Carolina this weekend - come stop by our booth - BiblioPlan. It's going to look something like this....

If you homeschool and are NOT going to be in South Carolina... then check our out website!! 

Thursday, March 7, 2019

Birthdays and Bruised Hearts

It's 5:40 am and I am sitting in the Richmond Airport heading for the Great Homeschool Convention in Fort Worth, TX.

Convention season has arrived.

I'm not ready.

I left little girl sleeping in my bed this morning.

Every morning for the last week she has slipped into non-stop seizures in the early mornings.

This morning was no different. Rob was there to rescue her.

I was driving to Richmond.

Trying not to think.

This last week we celebrated her 8th birthday.

She got to be princess for a day.

It was magical and precious.

But don't be fooled.

The princess had to have an escort (her big brother) hold her arm during picture time.

This is her current reality.

A new helmet that I personally hate. 

It covers her entire face. 

She needs it.

Last night she slammed to the ground face first. The new face guard did what it was designed to do. No bloody nose, bit lip, bruised chin.

I hate it but it's necessary.

She is no better.

And our hearts feel beaten and bruised as we watch her crumble over and over again every day.

But for last weekend we enjoyed our little princess.

And we celebrated in style!!

And a good time was had by all...

Happy 8th Birthday little princess!

You light up our lives!

Oops.... How in the world did that crazy hair day/crazy hat day picture land in this post???

Man, I am going to miss my three treasures this weekend!