Thursday, December 13, 2012

In a Galaxy Far, Far away...

Hello, everyone. This is the first post, of a new blog that I hope will generate lots of love. This blog will be all about our adventures dealing with our 5 year-old son's Complex Partial Epilepsy.

I cannot promise you that it will all be laughs, fun, and games. But, I can promise that it will be real.

A quick background:

My husband, Rick, and I have been married just about eight years. Renn came first, in March of 2007, then Eli joined us in February of 2009. We are a highly active family, that rarely slows down. Sure, we take time to smell the roses, but it's usually done in a drive-by fashion! We love to be outdoors, and to be together. We live in the Central Valley, in California. We hope to someday move somewhere a bit more spacious, but for now, we're thankful for where we are.



Rick has a job that we can't talk about, and boy-oh-boy, are we proud of him. He loves the Lord, and that's his best quality. He's strong, funny, has his degree in Biology, played trumpet in the Fresno State marching band, and can handle pretty much any task placed before him. To say that I am a lucky gal, is an understatement.

I am a children's book author, but am also honored to be a stay-at-home mom. My family is my world.

Eli is a vibrant child who has been getting the short end of the stick, lately. But, I don't think he notices. He's a firm believer that he will rule the world one day, and I can see it coming true. He's strong and funny like his daddy, and is so lovable, his hugs will rock you to your core.

And that brings us to Renn...


Renn. Loves. Star Wars. And so, he is our little Jedi. No disrespect to Mr. Lucas, but Renn is a bigger and better Jedi than Yoda, himself. He is brave. He has a strength within him at 5 years old, that I simply do not understand. His journey with Epilepsy began in March, and you can read all about it HERE. But for those who followed back then, now is the time to share what happened yesterday.

As most of you know, yesterday we traveled to UCSF for what we thought was a simple introduction to his new doctor, and a consultation for a better Video EEG. However, when we got there, the story played out quite differently.

Long story short (okay, I'm skipping the introductions, and each time we begged,"Boys, please sit down!"), the doctor told us her plan. First, she was going to look over Renn's MRI and EEGs. If she thought that we needed to re-do them, then that would be the first step. If not, or after we re-did them, we would do one of three things.

1. We would go straight to surgery to remove anything she was able to find on the MRI. The first MRI showed nothing, but in the event that the UCSF MRI was better, and she saw something, then we'd take care of it.

2. (And this is where it gets quite scary) We will to something called a MEG (can't remember what it actually stands for, as I was about to throw up at this point in the visit), which is basically a magnetic view of his brain so we can pin point where the seizures are coming from. Or, we'll admit him to the hospital, take him off his meds, and inject a dye into his body every time he has a seizure. Once we pin point the general area, we move onto the next step...

3. They will take him into a two-part surgery. First, they will remove part of his scull, and attach the electrodes to his ACTUAL brain, to determine the precise location of the seizures. After that (not sure if it's weeks later, months later, or if it's during the same surgery- as I was pretty much a blubbering mess while she explained this), they will have a second surgery to remove whatever it is that is causing all of this.

The kicker? The surgery only has a 50-60% chance of changing anything.

That's. It.

We now have a tough decision to make. How do we choose between allowing our little boy to undergo such a HUGE surgery, or not giving him the chance at a "normal" life?? If he continues without surgery, he will not get a driver's license. He will not be able to grow up and become a Police Officer, like he so desires. And that kills us. We've simply run out of medications, now... So, we're taking on Master Yoda's infamous advice...
 
"Do or do not. There is no try."

So, as we go along, please join us. Please pray for Renn, and all the millions of others who are battling this disease. Ask others to do the same. And share Renn's story! In fact, please share any information that you feel I've given, that could help someone you know.
 
Renn is a Jedi, alright. And he's going to pull through... God has the biggest and best plan set in motion for his favorite Jedi. He says so, in Jeremiah 29:11. And we're grateful for that promise.
 
Thank you for joining us on this journey...
 
 
 
...more to come.

27 comments:

  1. My thoughts may not be as strong, but they are with you Renn. Today and every day.

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  2. I'm fighting tears as I read this -- my dear little Jedi, and my dear Telles family, you are in my heart and my thoughts and my prayers. What a tough decision to have to face. May you and all the doctors and other caregivers have wisdom and insight and compassionate understanding as you seek the road to follow in this next stage of the journey.

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    1. Thank you, Beth. Like I've said before, you mean the world to us. One day, ONE DAY, we'll get lucky enough to wrap our arms around you! :)

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  3. I'm so sorry that you are having to go through all of this, Bethany. I am confident that the Lord is going to give you and Rick supernatural wisdom as you go through this decision-making process. Most of all, I trust that He will protect and care for Renn along the way. Love this passage from Isaiah 43:

    "But now, this is what the Lord says—
    he who created you, O Jacob,
    he who formed you, O Israel:
    “Fear not, for I have redeemed you;
    I have summoned you by name; you are mine.
    When you pass through the waters,
    I will be with you;
    and when you pass through the rivers,
    they will not sweep over you.
    When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.
    For I am the Lord, your God,
    the Holy One of Israel, your Savior;
    I give Egypt for your ransom,
    Cusha and Seba in your stead.
    Since you are precious and honored in my sight,
    and because I love you,
    I will give men in exchange for you,
    and people in exchange for your life.
    Do not be afraid, for I am with you."

    believing this for you,
    Amy

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    1. Oh, friend... Thank you. You're the best, and I appreciate you so very much. I'll be putting this on our fridge!!

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  4. Our thoughts and prayers are with you, Renn and your whole family.

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    1. Thank you, Melissa... We greatly appreciate it. :)

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  5. As a former Neurosurgery nurse I saw people recover everyday from open brain surgery. Most do just fine.

    The decision you have to make is quality of life. IF it were my kid I would do it. The sixty percent rate of leading a seizure free life is worth it.

    My prayers and thoughts are with you. :)

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    1. It's soooo good to hear this!! Thank you so very, very much!

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  6. Praying for you all and the doctors.

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  7. I am crying just reading this, and I am going to be sending some major prayers your way. (((hug)))

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    1. Thanks, girlie. No need to cry... God is good, through everything.

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    1. I couldn't breath at some of the parts reading this. Bethany you are one strong mama. I'm thinking and always praying for Renn, you and your family.

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  9. My church family has joined me in praying for our favorite little Jedi. My heart is burdened but as Christians God has given us His amazing gifts of love , mercy and grace. As you walk this journey,which no one really understands, may God grant you more love, more mercy and more grace until it overflows. Bethany you are a strong woman. I think Renn gets his Jedi strength from you. Just know that God hears our prayers and is standing as a strong watch tower over him. What a beautiful thing! Sending hugs!

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    1. God bless you, Cheryl! Thank you so much for your kind words and prayers. :)

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  10. Thinking of you, Rick, Eli and Renn as you all face this incredible challenge in different ways. Trusting for unity and peace as a family and great wisdom for the decisions that lie ahead.

    Warm hugs

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  11. Thank you for posting your journey. I'm so grateful that we "happened to" get reconnected at this major crossroads time of your lives. I am privileged to be able to pray for Renn and for you!!

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    1. Thanks, friend! We're blessed to have you "back". :)

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  12. Bethany. My techno gadgets have been acting up still so I have been unable to like things on FB or follow links until now. Just wanted to let you know that I am here for you guys. If you would like for me to a) set up a playdate in Chico b) send constant good thoughts your way c) contact George Lucas somehow, someway, or d) all of the above, please just let me know. B is a freebie. A is way easy. and C is do-able and not past my level of sanity. Thank you for sharing your family's journey with us. Give a huge hug to Renn for me. Love you.

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    1. Oh my goodness! You had me at "A"! However, I'd be ridiculous not to choose "D". ;) Renn meeting Mr. Lucas would be the most insanely amazing thing ever!

      Thank you, friend... You are such a light for our family, in this awfully dark world. Love you back!

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  13. Amy's verse was lovely, and Elizabeth's offer amazing (imagine meeting George Lucas :)). I have nothing that wonderful to offer, but my thoughts and prayers are with you and your family, and I trust that the force will be with you all on this one.

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  14. Bethany, I'm so glad you have created a blog so I can follow along and know specifically how to be praying. I look forward to seeing Renn and Eli on Sundays. They give the best hugs and have such infectious smiles! We love your boys and our entire family will be praying for Renn and all of you as you journey through this process together.

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