Friday, January 11, 2013

Jedi Master Training Mission: Last of the Training

This mission is... OVER!!!


We are headed to our home planet and we are sooo happy. We received a lot of information that I will share in moments, but please know how grateful we are for your love and prayers. My goodness... without them? This journey would have been far more difficult!


I'd like to introduce you to someone, by the way. This...


... is Dr. Amazing.

Renn had just had his electrodes taken off when she came in. She brought him a Ziplock bag full of Legos and several Star Wars Lego characters. She said, "My kids and I sat and went through all of their stuff last night, and they wanted you to have their favorites. I told you I'd bring you something from home!!"

Yesterday during his MEG, she sure did say that she'd bring him something from home. And here I was, thinking it was going to be a special snack or cookies that she'd made. But her own children gave to our Jedi from the bottom of their hearts? I told you... She's Dr. Amazing, and it sounds like she has equally amazing kids, too.

So, we have good news that is also very, very bad news. I guess it won't matter the order in which I tell you, right?

Well, it's looking like this little mummy (yes, this is his Mummy Face!) is not most likely NOT going to be having surgery! I know, I was thrilled too. I got shaky, and started praising God in my head. I was picturing him playing with the full-blown soccer league this summer, and voting myself as team mom.

But (Lord, how I'm beginning to hate that word), the reason he probably won't have surgery is because he is inoperable. You see, we were here to determine if we could find the single, pin-point location of where his seizures stemmed from. We were pretty sure his seizures were Focal, on the right Frontal area of his brain. However, what she's about 90% sure of is, his seizures are Generalized... meaning, they're everywhere... meaning... they'll never stop.

So, with the oddest mix of emotions around, we are ready to process what this means, and continue to move forward. What's next? We're starting him on a new medication (I'm trying to remember the name right now, but I'm a bit overwhelmed at the moment- my apologies), and if that doesn't do the trick, we'll do a PET scan, and then these terrible diets that I never knew was an option (because we thought his seizures were focal).
For now, we go home. I will be updating this blog constantly. I will be doing interviews with other families dealing with different types of Epilepsy, so we can educate ourselves on this condition. It seems to be here to stay, for our little, and oh-so-FREAKING-brave Jedi. So, we're going to make the best of it, and pray that we will find the medication that keeps him seizure free.

We have about an hour 'til we hit the road... Renn took a nice, loooong shower, and is enjoying having the freedom of his head back. Thank you, everyone. You are such giant blessings in his life. :)






Renn says: "Thank you for loving me. Can you pray for me? I am happy that you love me and that you take care of me. I can't wait to play with you. Thank you."



And with that, let's go home.

8 comments:

  1. Oh my. You've been up and down like a roller coaster. I hope they can find the right medication and diet combo that will help him. And Dr. Amazing is amazing indeed. What a wonderful gift!

    Love you all!

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  2. Bittersweet news. Hang tight to the light, love, and positive energies that surround Renn, you, Rick, Eli, and Dr. Amazing.

    Renn is such an awesome kid! A reflection of his amazing mom ;~D

    Feel the love and hugs!!!!!

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  3. Yay. and Boo. and YAY! and BOO. and Ugh. Oh well. Better to know than not, and better to know quickly than slowly, so that step is taken and behind you. Is this a condition that would benefit from a seizure dog? I know they exist and can predict seizures before they occur. Is that anything?

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  4. Yay. and Boo. and YAY! and BOO. and Ugh. Oh well. Better to know than not, and better to know quickly than slowly, so that step is taken and behind you. Is this a condition that would benefit from a seizure dog? I know they exist and can predict seizures before they occur. Is that anything?

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  5. My goodness, what a week you've had. You are both so brave. Even though what you've learned is maybe not what you were hoping for, hopefully every bit of knowledge helps in the long run - add up enough bits of knowledge and you'll solve the problem, I know you will. Dr. Amazing certainly does sound amazing. And I was going to say what Genevieve said about the seizure dogs - don't know if thy'd be helpful in Renn's situation, but they certainly do exist! Enjoy being home sweet home :)

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  6. I hope you and Renn are settled in at home and enjoying it the best possible. I'm sorry about the bad news but glad he won't be subjected to surgery. My heart and thoughts are with Renn, you, your husband and family as you continue this insane journey. Best of luck with the next steps.

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  7. Thanks for sharing this with us,Bethany. I have grown very fond of your little Jedi! Renn is on my heart. Glad you're home :-)

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  8. YAY Renn! Good luck in the days ahead! :D

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