Wednesday, August 30, 2017

Butterfly Trapped in a Spider's Web

Carly has been doing wonderful for over two years since starting CBD Oil. In fact she has had great success on the oil. Myclonic seizures are non-existent, complex partials have all but gone away and her cognitive abilities have improved greatly. Not to mention her EEG has seen vast improvement.

However, Carly has been down a rough road for the last several weeks. The generalized Tonic-Clonic seizures have reappeared. For those that do not know, Tonic-Clonic aka Grand Mal, are the really tough to watch, hard on your body convulsing seizures. In my book they are the worst of the worst.

She had her first reappearance several weeks ago. As her parents we tried to stay positive thinking these were a "one and done" type of thing and they would go away. But that is not the case. The tonic clonic's are occurring just about daily and are scary as hell.

We are not taking her off CBD Oil but Sudden Unexpected Death from Epilepsy(SUDEP) is always in the back of our mind and scares us. We have been to see the team of doctors at UAB and are currently working with them to come up with a plan to stop these awful tonic-clonic seizures.

Our sweet butterfly is tangled in a spider's web but our resolve will never fade.


Monday, February 6, 2017

Carly, Christmas and Peppa Pig

I know it's February but this is a story I have to tell. Not only for Hope, but to ensure you that in everyone there is someone.

As Christmas 2016 rolled around it was time for Carly to pick out gifts at her school. As with all the kids, she got to go to Santa's workshop to pick her family out gifts. As she was wheeled around the "store" her teacher picked out a few things that she thought Carly may like for her two siblings and parents. She picked up two items, showed them to Carly and whichever one she showed interest she kept. Keeping the one she had interest in she picked up another gift to make certain it was what Carly wanted for her family and each time she went to the same gift.

As we all opened our gifts at Christmas Amy and I sat in amazement and joy. Carly had picked out a basketball for her brother and a Peppa Pig stuffed character for her sister. Why is this amazing? I'm glad you asked.

It just so happens Colton was playing on a basketball team for the very first time and that is all he talked about around Christmas. And the gift that amazed me the most? Peppa Pig. No way for her teacher to even think for one second her sister watches that cartoon yet she picked one out. Why did she pick it out? Simple. Carly and her sister watched Peppa Pig every night before bedtime as they lay side-by-side.

This was definitely a life event for me. While driving home one night, I parked my truck, went into the bedroom where Amy was and I balled my eyes out. Cried for at least 5 minutes. This was God letting me know there was a girl inside that broken body.  A girl wanting to play with her siblings. A little girl wanting to bake cookies with her mom and have a tea party with her daddy. But she can't. A disorder stole that from her. Her body and brain won't let her do those "typical" kid things. But that same disorder didn't steal her love for her family.

I tell you this so that you will know the next time you see a child or adult in a wheelchair, non-verbal, making noises, clapping their hands together, wearing diapers and you think to yourself they are worthless...Stop. There is someone in everyone. Everyone doesn't look the same as you. They don't communicate the way you do. They don't believe everything you do. But I promise they LOVE the same way you do, all you have to do is love them back.

God Strong.