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.


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!

Monday, July 6, 2020

Rest for Mom... Hmmmm...

We almost didn't come this year.

The yearly Reece's Rainbow reunion was canceled and we had resigned ourselves to staring at the four walls in our little house on the hill.

BUT... some of the families decided to join the 'A Mother's Rest' week at Yogi and we decided that a certain mom among us needed a rest from the four walls at home so we decided to join too.

So... yesterday.... we pulled into our favorite place.  

We made a mad dash to Walmart for our week's supplies. Set up our cabin... and here we are!

All of Mary's food was put together before we left thanks to some wonderful aides who spent an entire day measuring and cooking!

So no Mary food prep. That is a HUGE respite for me this week!

We already met the famous Reece and his mom (founder of Reece's Rainbow AND A Mother's Rest) in the pool this morning.

The campground is fairly empty compared to previous years so social distancing isn't a big issue.

We plan on doing a lot of swimming, reading, eating easy, fun food, roasting marshmallows and just being totally lazy!

Hopefully Little girl's seizures will be manageable because respite from that would be the best respite of all!! Thankfully, except for a few rough days last week, she has had a really good month...for Mary... 

Course I am really missing my babies back home (Rob said a certain little puppy was beside himself yesterday after we left), and leaving Rob at home was not my first choice but someone has to hold down the fort!

And of course I still have my computer and will still do BiblioPlan stuff because... it just never ends...

But despite a few inconveniences, I'm off to get some rest....

(Because this is the A MOTHER'S REST week)...

Of course someone needs to tell that to the three littles that I brought along because THEY think this is THEIR vacation!!

Friday, July 3, 2020

Our Little Secret

Abandoned. Lost. Ragged and scared. 

Starved. Covered in ticks and fleas. Infested with worms.

Just a little dog.

Hiding, trembling in the woods.

Weariness, hunger, sickness made him easy to catch.

Kind hands carried him to their house. Food. A safe place to stay.

Lost dog they cried. His picture shared hundreds of times.

No response. Silence.

They called him Walker. 

They asked us.

Would you care for this lost puppy?

Foster him?

Love him?

Stinking. Mangy. Sick.

We brought him home. Whispering words of comfort. His little body shivering. Scared. Who were these new people?

As soon as he could he ran. His little legs heading for the woods. Until he could run no more. Weariness allowed him to be caught and carried back home. 

But again, as soon as he was able he escaped - through the rail of the porch and dropping 10 feet to the ground. He ran. Again we gave chase. Following. Until weariness again overcame him. 

He cried all night. His pitiful howls broke our hearts. 

We washed him. Cared for him.

The kittens hissed and spit at first and then determined that he posed little threat. 

The vet gave us meds for tick fever and worms. They found a chip implanted and called his family. We reported him to the SPCA.

He made his home on our couch and chair. Rotating between the two places all day. 

We paid the bills and waited. Who would abandon this dog? 

His sweetness shining through his misery.

He stole our hearts but we steeled ourselves. We can't keep what belongs to someone else. We couldn't share. He was our little secret.

We fostered. And we loved. We let him sleep. And sleep he did. For days and weeks. Only slowly emerging back to life. Watching us. 

Wagging his tail with joy each time we loved him. Stroked him. Going outside only when coaxed. Terrified of being left alone. As soon as a door would open he was back on the safety of his couch. Back to the chair. Back to sleeping and watching. 

And our terror-filled pup found peace. He began to follow us outside. Trailing along behind.  When Rob installed a cat/dog door he was beside himself with joy. He could come and go at will. No longer terrified of being trapped outside. 

And today.

He's ours. 

No one responded to the calls. His family silent.

We can legally keep him.

Our little abandoned pup has found a forever home.

We call him Miles. Miles Walker. 

Our pup traveled many Miles before he Walked into our home and hearts.

He is perfect for us. Sweet. Gentle. Easy-going. He doesn't mind little girls who put pony holders on his ears or plays with her toys in his sleeping spot. He is fine with babysitting the kittens. He loves the craziness and loudness of our family. He is content to stay in our yard - roaming only as far as dad's house to peek in his windows and wish him a sweet hello. 

He came from trauma. He has many fears. But we understand trauma here. We are fine with giving space. We don't mind pups who need to feel safe on a couch and sofa. We are happy with him just the way he is. 

Our Miles Walker has come home. 

He's been our little secret.

And we are so thrilled!

Tuesday, June 23, 2020

PJ's and Hot Dog Roasts

We are still quarantined and trying hard to make the best of it...

PJ's all day some days.... and lots of nap times (but only for kittens)

Lots of reading times!

"The Spooky Old Tree" as read by Mary Nalle to Molly and Max...

Daily visits from my dad... and more naps in the most unusual places!

Cooking dinner outside..

And yes... PJ's and Sunglasses on Little Girl!!

Hot dogs and chips for dinner is the life!!

Roasting takes great concentration!

Proof positive that we are working hard at making the most of quarantine in our little house on the hill!!

PJ's and Hot Dog Roasts... and funny little kittens who have a way of keeping us chuckling!

Can't work any harder than that!!!

Monday, May 25, 2020

Meet Max and Molly

Because why not!!

Everyone needs 2 kittens in a quarantine!

Everyone needs a good chuckle...

And the two newest members of our family have definitely added the chuckle!



Brother and sister

They make great lap warmers!

And provide a great excuse for taking a nap... I'm babysitting the babies!!

They keep a certain little girl entertained...

They are purrrrfect for us in this season of isolation

And stress...

In terms of business - Conventions are canceled or moved to later dates... This has created a massive amount of juggling and adjusting.

We are in a huge learning curve as we are forced to join on-line conventions and record speaking sessions and design ads and figure out social media and on and on. 

Can I just say that speaking in front of a filled auditorium causes me little stress - I truly enjoy it, but stick a mike and camera in my face and I freeze.

It just is not the same!!

Teaching through ZOOM was close to the same stress.

I LOVE teaching.

I love engaging with my students.

But sitting in front of a computer screen and trying to engage a screenful of faces is a challenge that wore me out each week. I am glad that our last ZOOM classes ended this past week. But ending was bitter-sweet. Saying goodbye to a screenful of kids just broke my heart. I have 6 classes filled with kids and I had to ZOOM them away. Hitting the 'end session' each time felt so wrong.

And Mary...

Little girl has taken another turn for the worse.

She had been doing so much better but in the last few weeks she has deteriorated and we are struggling to understand why. Nothing changed. But something changed. Scary. Frustrating.

We are waiting on bloodwork results and anticipating next steps. We have paperwork in to the Children's Hospital of Pennsylvania (CHOP). Our neuro wanted us to get a 2nd opinion so we are heading there when we get the word. 

Between now and then we have to figure out what to do about her tanking.

Through it all we are hanging in...

Enjoying our newest members...

Keeping busy working, homeschooling, gardening and playing!

Wednesday, May 6, 2020

Our Silver Lining

He's the big brother who teases relentlessly, steals their stuff, eats their candy and hides their toys. 

He pokes and tickles and locks them out of the house and does everything that big brothers do to little brothers and sisters.

He plays hide and go seek and laser tag. He takes them for rides. He destroys them in their video games.  Makes them popcorn. Watches movies with them. 

He's big and strong and fun and they adore him.

He is their silver lining in this social distancing.

He lives and works in Charlottesville and normally we see him only on weekends. 

When the world shut down, his full-time work went on-line and his second job at the gym closed. 

Being home alone in an apartment was too quiet and lonely. Since he was working on-line - it didn't matter where he lived. We had work-out equipment here. So he packed his bags and came home.

To hang with us. 

To share our meals, laughter, conversation, fun.

To work out. To teach them how to work out.

To wake them up early on mornings they get to sleep in.

To take part in family activities like hiding their Easter Eggs so hard it takes hours to find them all.

He's our silver lining.

Not just for the littles.

Mine too.

And Rob's.

Having him home has been such a joy and blessing.

He makes me laugh. He drives me crazy. He teases and jokes and steals my phone and eats all the leftovers. 

He's stubborn and fussy and keeps me on my toes.

I can't boss him around. He's too big and doesn't listen to a thing I say.

But he has been second and third and fourth hands with Mary and the boys. He runs errands and goes shopping and helps with packages and cooking.

He loves to chat. 

He loves to listen.

He loves his brothers and his little sister.

He is kind and generous and we love him to pieces.

He's been the best part in this time of isolation.

I am trying not to think about when he will pack his bags again.

We will sorely miss our Silver Lining.

Without his teasing, talking, bossy self our house will be a lot quieter!!