The Longest 10 Minutes

 

She cried out for me at 2:30 am. I carried her to bed - her little body seizing in my arms. I lay beside her holding her, praying she would slip back into sleep. She lay there, her body relaxed one minute, seizing the next. Over and over. Finally, thankfully, her body relaxed and she slept.

 

We knew it was short-lived.

 

We knew because we had been down this road too many times before.

 

Morning came and with it a torrent of seizures. I could see her on the monitor. Status. A word we have come to loathe.

 

Status. Non-stop seizures.

 

I carried her down and called Rob over from his office.

 

He held her as I gave her rescue meds.

 

Then we waited.

 

The longest 10 minutes each time.

 

She came out in nine.

 

Smiling. Silly. Dopey.

 

Her eyes bright and beautiful.

 

It's not always that way.

 

Sometimes she needs more.

 

Sometimes our more isn't enough and we have to call 911.

 

It's the longest 10 minutes each time.

 

Today she will be hard to manage. Oppositional. Fussy. Rescue med side effects.

 

 

Tomorrow we don't know.

 

Status is coming too many times in the week to ever be able to breathe easy.

 

We removed one drug. Added another.

 

We faithfully administer CBD. We diligently weigh every morsel she eats.

 

On good days she has around 80 or more falling seizures but is sweet and easy and a total delight.

 

On bad days, well... we pray that rescue will work and endure the side effects as best we can.

 

We are doing everything right, but nothing is right.

 

We are in a waiting period. Waiting for the drug we removed to get out of her system. Waiting for our next appointment with our neurologist. Waiting for more tests. Waiting.

 

It's not all dismal.

 

We are trying to find fun in the hard.

 

Besides music and dancing, little girl's favorite thing to do in the entire world is swim.

 

I should have taken this picture when we arrived instead of when we were leaving!! Trust me. She loved it!!

 

 

 

They were no less in heaven themselves!

 



 

Of course the morning we left was a status morning, so little girl was torn between having the time of her life and some pretty fierce tantrums and fighting when she had to leave the pool area.

 

Rescue med side effects make our lives a bit intense to say the least.

 

Great Wolf may be for the kids, but a women's UVA soccer game is a Mama and Papa favorite. Little girl wasn't sure she liked this family activity and with another morning of rescue... well...

 

Between her Kindle and Keto snacks, we got to enjoy half the game in relative peace!

 

Mary's seizures dominate much of our lives.

 

We are grateful she gets to go to the same Christian school the boys attend. The Lord has blessed us with two wonderful aides who tag team keeping her safe. She loves school and is working hard at learning to follow the rules there. Rescue days make it hard but thankfully, they are patient and understanding with our little one.

 

We hold our breath each morning praying that we can get through without the longest 10 minutes.

 

We spend hours every day measuring every bite she eats. Lately she has lost her appetite which makes every meal a battle ground. She HAS to eat every bite.

 

We deal with behavior that wears us down to a nib by the end of the day.

 

It's our current lives.

 

It makes blogging hard. It makes thinking about anything else next to impossible.

 

 

But we love her. We love her so fiercely that it takes our breath away. Last night she was refusing to eat her dinner and was instead crossing her eyes at me with her food squirreled away inside her mouth. I was torn between yelling and laughing. Mary cross-eyed is quite the funniest, most adorable look I've ever seen.

 

 

She is a master at pushing all of our buttons, yet weaving her way deep into our hearts.

 

Deep deep into our hearts!

 

 

 

 

 

 

 

AARRGGGGHHH!

It's HIS turn!

He has been waiting all summer to have his turn to be a pirate like his Papa and Elijah!

He's been singing and dancing across the stage this weekend in Peter Pan!

This has been his biggest show so far and he is loving every single minute of it!

We are so proud of our little pirate! He has delivered every single one of his lines perfectly. And he's even working on putting expression in his words. If you knew Aaron you would know this is HUGE for him!

We are grateful to all those who took pictures of himn so we could share them. Mama does backstage managing and Papa does set changes, so without our friends snapping photos we wouldn't be able to share our sweet boy!

Keeping Lucy

 

See that adorable sweet puppy in all the pictures in this post... don't be fooled. She's naughty! She likes to jump and nibble and poops in all the wrong places.

 

 

 

She's the first dog we have owned who is not afraid of our stairs. She charges right through the cat door and up the steps to visit Rob in his office. She thinks all the paper and books and office supplies up there are for her puppy pleasure.

 

 

She also thinks every single one of Mary's toys is hers too and chewing them is her favorite pastime. She doesn't mind chewing on John and Aaron's stuff too...

 

 

 

She loves books. She doesn't know to read. She does know how to chew and rip.

 

 

 

 

She loves running under the feet of anyone who is outside making it virtually impossible to walk two steps without tripping.

 

 

She LOVES LOVES LOVES Mary and no... she is NOT a service dog and YES... she thinks Mary down during a seizure is a lovely time to lick and kiss and nibble and walk over top of her.

 

 

 

She's adorable.

 

 

She's naughty.

 

We wonder often what we were thinking!

 

Adding naughty puppy to our crazy is just a bit more crazy!

 

 

But she is a great cuddler.

 

And she loves our family.

 

And she makes us laugh even when she is driving us crazy.

 

Laughter is good medicine.

 

So I guess we will keep our Lucy... or Louees as Mary calls her!

 

And take a few puppy obedience training classes for good measure!

 

 

 

 

 

Lucy

How could I?

 

How could I see that precious little face and say no???

 

 

I couldn't.

 

Little Lucy is currently hanging out in my office waiting for the three musketeers to come home and discover that they now have a brand new puppy!

 

 

 

She couldn't be more adorable and sweet!

 

 

Even when she steals my chair!

 

 

Life has been so so hard these last months. Little girl is just really struggling right now on every level. Adding a puppy to our mix seems insane.

 

But sometimes you need a puppy in your life.

 

Sometimes your kids need a puppy in their lives to bring some laughter and fun.

 

And sometimes Mama needs a puppy. Because sitting here typing this with a sleeping puppy in my arms is therapeutic and calming after a week of anything but calm.

 

I couldn't say no because little girl needed a new best friend and the little boys needed a puppy to romp around with and I needed one too.

 

I needed this newest member to our family.

 

It's going to be a wild Friday afternoon!

 

 

 

 

 

 

 

One in a Billion

Thursday morning.

My house feels empty.

Elijah left for college yesterday.

Rob and Aaron are in Philly this morning. 

Aaron has surgery today on his thumb, and I'm sitting here in my little house on the hill feeling sorrow that I am not there with him. It is the first time one of my children has had surgery and I have not been by their side.

Little girl is in school. Just for the morning. We are starting slow. The last week has been a roller coaster of seizures. She had a peaceful night last night. The first in a very long time. We changed some meds around in hopes that it will give her relief. 

She's one in a billion. Mary. We found this out on Tuesday. 

We already knew this before Tuesday. Her seizures are so unique that it is rare that we can find anyone with similar seizures, despite spending tons of hours watching youtube videos, asking in epilepsy groups and researching everywhere we can. We don't even have a good name to describe them. They are a little bit of this and a little bit of that.

We knew she was unique but on Tuesday we found out just how unique she is. Her genetics testing came back. Her results are so unique that there are literally only two tiny articles on-line listing four people in the world who have ever had those results and only two of them have symptoms similar to Mary. Her results are so unique that her doctor found the same two results that we did and had no other leads from where to go from here.

One in a billion.

It means that we can't discuss with other families what does and does not work. It means that we have no idea what her long-term prognosis is. It means that she will be forging the way for families behind us. Our story will help them. We don't have a story to help us. 

One in a billion.

Go figure.

I sit here in my little almost empty house missing my peoples. Praying for Aaron. Worrying over him from afar. Missing Elijah already. Wishing the summer hadn't flown by so fast. Wondering how little girl is doing in school. Realizing that this moment of quiet is the longest I have had in forever. 

Thursday morning.

I think I just might go have myself a quiet cup of tea.

And pray for my sweet boy.

A Busted First Day

It was supposed to be her first day of school today.  I was supposed to fix her hair all up and dress her up in her pretty new dress.

That's what it was supposed to be.

Instead we had an ambulance ride to the hospital because the rescue meds we gave weren't rescuing her. 

Instead we had to have an IV to administer another rescue med that actually worked.

Instead we spent the early morning hours hanging around at the hospital.

Our first day of school was a bust.

Maybe tomorrow we can dress her up in her pretty new dress.

Maybe tomorrow we can avoid another trip to the ER.

Maybe tomorrow.

For today she will recover from our early morning adventures, play dress up and drive her rather exhausted Mama a bit crazy!

Beaches, Birthdays and Trashcans

Celebrating Aaron today!!

He's 14 years old!

For John's 14th birthday week we were in Kentucky at the Yogi Bear Campground. This week (for Aaron's 14th) we spent a few days at Virginia Beach. They are four weeks apart which makes celebrating rather crazy!

Little girl had a ROUGH week of seizures and quite a number of emotional meltdowns but still had fun learning all about beaches and salt water and waves and sand!

All three were rather nervous about getting in the water. You can hardly blame them. Their disabilities make swimming in the waves quite the challenge. Aaron struggles to swim without the use of his upper body, John struggles to move in the water due to limited mobility in his legs and Mary has seizures every few minutes.

It's a bit of a recipe for disaster.

The first day we worked hard at helping them gain confidence. Translation - getting them to put their feet into the water.

We spent the second day playing in the sand since the first day's endeavors didn't pan out very well.  But after lunch they got bold and allowed us to take them deeper into the water. All three started enjoying the water as long as someone was holding onto them.

We spent the third day watching John and Aaron realize that they could tackle the waves on their own. What a fun day they had battling the waves together! Little girl thought she could also tackle  the waves on her own but with her seizure level so high we made sure to have a tight grip onto her!

I don't know what we would have done if Elijah hadn't been with us. We truly needed three hands for this 'vacation.'

It wasn't exactly the most relaxing away time but watching them enjoying the waves on the last day made all the work and stress and meltdowns and food issues worth it.

Little girl came home on Thursday and had a wrestling match with the trashcan and lost. Translation - she had a seizure and somehow fell in such a way that the trashcan hit her in the eye despite the fact that her helmet was on.

On Friday morning she had another round of non-stop seizures. We gave her the rescue med but before it kicked in she had a tonic/clonic seizure (grand mal). 

It's been a wild week.

We are rejoicing with Aaron, recovering from vacation and grieving the never-ending seizure story!

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!

 

 

 

 

 

 



Our Love Letter

I was being so organized. Last year at the Reece's Rainbow reunion my battery died on the camera so I was only able to take pictures for the first few days.

 

I mean - a reunion without a camera is like leaving part of my soul behind....

 

So this year I got smart. I would charge the battery before we left so that there was no danger of running out of battery.

 

I plugged that battery nicely in the charger and went about the frenzy of packing for 6 people for 6 days away. Packing this year included figuring out little girl's food for the week which added a thousand hours onto the entire packing process.

 

All the while - my battery was charging nicely in charger.

 

It was a wonderfully charged battery.

 

It charged wonderfully for the entire time we were gone. It was nicely charged when we came back 6 days later.

 

Who goes on vacation and leaves the camera battery at home??

 

Frenzied, harried me!!

 

No camera. Just a phone to take pictures.

 

I know that some people ONLY have phones to take pictures and love them, but I am not one of those people.

 

I so missed my camera.

 

 

 

I will be real.

 

Taking a newly adopted child is a traumatic experience. It is out of routine, scary and overwhelming. We spent the first few days looking at each other and wondering if it was worth it. Adding her seizures that are currently increasing by the day just adds chaos to the chaos. Cooking separate meals for her and for us was nuts. She was happiest in the pool and most unhappy out of the pool. So we swam. A lot. Having three disabled kids adds crazy to the crazy.

 

But, despite the meltdowns... she had a blast.

 

 

 

You would think that fracturing her collar bone from falling off one of these would mean she would never ever want to get back on one again..

 

 

 

Think again.

 

 

 

She was fearless and we were both having mini-strokes.

 

 

She didn't think the group photo was much fun but she LOVED Yogi!!

 

 

She made friends and even worked on her sharing skills a bit... that's a work in progress...

 

 

 

She got to meet Auntie Andrea (founder of Reece's Rainbow). How cool is that!!

 

 

 

Her brothers had a lot of fun too. They made new friends and played with old friends.

 

 

Going to Yogi is the absolute highlight of their year. They are already talking about going next year.

 

 

 

John celebrated his 14th birthday on the trip! He got to explore in a cavern as part of his birthday.

 

We had our third annual invite to our cabin for fellowship and smores.

 

 

On the last night Mary sang in her first Karaoke. No - she will win no awards for her singing abilities, but it was stinking adorable. Yes. I have it on video. Come to my house and I will share!!

 

 

 We had some great talks with so many moms and dad who are in the same trenches we are in. Those conversations were priceless. I needed those talks. I needed to share my heart, my exhaustion, my struggles with people who get it. Adoption is hard and emotionally costly. Many are living hard lives but as someone so poignantly reminded me - what we are doing with these children is our Love Letter to the One who gave His life for us. Every day they give us an opportunity to express our Love to Him.

 

 

Yep. It was a wonderful week despite meltdowns and seizures.

 

  

 Little girl learned that we can go and have fun and come home again and all is well. Those are important life lessons for her and she needs to have them.

 

 

Goodbye Yogi...

 

Until next year....

 

With fully charged battery and camera in tow...