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!