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!