Leasing an Angel
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Peace be with you, My Child

8/31/2016

8 Comments

 
Every sitcom has that episode that is needed to tell the story, but just isn't your favorite. I mean, you get why the writers put it in, but you won't view it again when you binge watch this winter. That'd be this blog I suppose. I gotta tell it, but if you are looking for it to come together in an inspirational greeting card ending, I ain'tcha girl this evening.
So, backstory... yes, things have changed enough in the past few days to have an actual backstory.
Luke started Vimpat, another seizure medication, this summer. He started to become wobbly and unbalanced before starting the Vimpat, around his birthday, but it has gotten progressively worse in the past few weeks. We have been racking our brains to decide if the Vimpat was causing the wobbliness or if it was the direction in which we were heading anyways due to the amount of seizures he was having and the area of his brain in which they were happening. That being said, we have seen no decrease in seizures since starting the Vimpat. His ''normal' seizures we see 3 to 7 times a day have not slowed down at all.
​So with the combination of the possibility of increased balance issues and little to no seizure control, we decided to start to wean off the med and try yet another. That was two weeks ago.
Since then he has slowly started to develop these cluster types of jerky-twitchy- shocky (Sorry for using such technical language) seizure episodes and they have started to ramp up. At first, you could just notice a little eye twitch and a whine. That would maybe happen 3 times in 5 minutes. Next it changed to little shocks. Today, we saw at least 45 minutes of seizure activity. Now, I am not a mind reader. Luke was not hooked up to an EEG, but even after two large doses of Ativan, Luke was still agitated physically and mentally. We were very close to going to the hospital to get some rectal Diastat. (I know, I know, I emailed he clinic tonight to get a new script to have Diastat and Ativan at the house.. It has been so long since we needed something like that, they had expired) Honestly, we wouldn't have given him Diastat after two doses of Ativan anyways without being supervised. My plan A tonight, when the hospital became plan B, was give the second dose of Ativan and start asking in an affirmative tone (that is PC for 'yelling') "Give this child peace, Lord!" Ok, maybe I asked for peace for us all. At this point we had been dealing with some kind of awful for about three hours. Even Sam needed a little peace at that point. That may have been why it took a little longer, I did a bundle prayer for us all. Feel a little badly for raising my voice. I have been told Iam a little aggressive at times...
So Luke and Sam are peacefully sleeping and I am peacefully eating my emotions in a vat of popcorn.
No Danny Tanner ending tonight kiddos.

Spread some love and keep on dancing.
Picture
Sam sat on Luke's lap until Luke gently pushed him off. I was having this flood of emotions thinking Sam just wanted to be with his brother during this tough time, but there is a 70% chance he just wanted to sit in the new cool chair.
8 Comments
Terri
9/1/2016 04:58:16 am

You, my dear, have earned the right to use that voice. It's used in love, Thank you for sharing these parts of your journey, Doubled-up prayers that Luke gets some relief soon. You guys could all use some rest. Peace and love be with you, my beautiful friend,

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Brenda
9/1/2016 05:16:50 am

Peace be with you! I love you! ❤️

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Nancy Smith
9/1/2016 05:16:57 am

This is a tough and challenging road you are traveling, Stephanie, and you are doing it with amazing love and grace. Thank you for your willingness to share your journey. We are praying for peace for you all and send you our love. Aunt Nancy & Uncle Kirk

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Marie
9/1/2016 06:03:24 am

We love you guys!! We pray hard for him...

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Michelle
9/1/2016 04:17:42 pm

I have no idea who would ever consider you aggressive sugar, but they must be crazy. Eat your popcorn and enjoy every morsel, if I had "mom" ativan I would run it over as fast as I could. Bwhahaha who am I kidding, I don't run anywhere, but I can drive quickly. ;)

Sending those prayers up for Luke and Sam, love you friend.

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Rose
9/1/2016 06:16:04 pm

Sweet little boys😇🙏🏼🙏🏼❤️

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Beth White
9/2/2016 05:58:17 am

Prayers for strength comfort as you continue to do all you can do
HUGS

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Debbie McCartydsmccarty
9/2/2016 01:29:30 pm

I only know Luke through my sweet niece, Jenna Vigar.. I prayed for Luke and Sam and Stephanie as Jenna asked. You are a wonderful mother, Stephanie. May God give you His grace to handle everything and His wisdom to make the right decisions. Sounds like you are called upon to make many important decisions each day in Luke's life, especially. Praying for healing for Luke too. Love in Christ, Debbie McCarty

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    Mother of two amazing little boys, one who just happens to be a TS warrior. 

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