Tuesday, June 25, 2013

Lost In Space

I am quite embarrassed at the fact that it has been nearly two months since my last post... Let me tell you, life does NOT slow down around these parts!

Quick update...

1. Renn passed Kindergarten!! We were so very worried right about the time Spring Break came along that he wasn't keeping up with the rest of his classmates. But, boy were we ever wrong! He got THREE awards: The Spelling Bee Award, ABC award, and the Principal's Medallion for Reading (yes, this made his writer momma PROUD)!

 2. Renn is 100% off all medications. And it's been very interesting to watch him all day long (now that he's not at school) to see just how the seizure activity really goes. It's been rough. And knowing how many he must have been having in class really makes it difficult to not worry about First grade.

3. I started using SeizureTracker to gain perspective on what's going on with him. It's GREAT! For anyone who is dealing with Epilepsy in any capacity, I HIGHLY recommend it! I have the app for my phone (it's for iPhone/iPad only... Sorry!), so I am able to not only time each seizure, but also record video and attach notes about the entire event. It's heaven, because it gives me the idea that I have some control. I know I don't but, hey... It helps keep me sane and I'm all about sanity right now.

 4. Renn's Neuropsychological testing went quite well! Haven't gotten the results back, but it was very interesting to learn that Epilepsy has definitely been the cause of his behavioral immaturity. I want to dive into this more, so I will come back with a designated post, when we get his results.

5. On July 3rd, Renn will be going in for something called a Single-photon Emission Computed Tomography (SPECT) scan. What will happen is when he has a seizure, they will inject him with a radioisotope that will follow his bloodstream to where the seizure is coming from. It will then provide the doctors with a better, 3D imaging information, as well as a cross-sectional view of what's going on in his brain when he has a seizure AND just precisely the spot where the seizures are coming from. If he doesn't have a seizure (which is my #1 fear), the test is useless. The isotope expires after four hours of being made. Ugh.

After the SPECT scan, he will be admitted for yet ANOTHER Video EEG, and on July 5th, he will endure an in-depth MRI as well as a brain perfusion. I'm not sure when we will be going home, but I'd imagine it would be on the 5th or 6th.
6. Last, but not least, I have started a Facebook support group for mothers who have kiddos with Epilepsy. If you, or someone you know is a momma with a child (no matter the age) with Epilepsy, feel free to join!

It's been a crazy school year, filled with more ups and downs than I'm willing to admit. But Renn has grown so much! We are going to continue this journey with him, as always... And as we prepare for the dreaded surgery day, we are thankful to have each and every one of you with us.



  1. The continued stream of love, light, and hugs cuddles your family!!!!

  2. Tons of hugs, and hope, and love from me, too. Oh how I hope everything goes well next week. You all remain in my thoughts and prayers. Always.

  3. Thanks for the update. Congratulations Renn on your awards :) I hope the scans next week go well.

  4. Congratulations Renn on your awards.... fantastic! Thoughts, and lots of hugs and cyber love coming your way for next week. Hope all goes well for you all! Thanks for keeping us updated, Bethany!

  5. YAY RENN!!! The Force (of will-power)is strong with you and your family!

  6. ...And the strong get stronger. God bless you on this journey. Prayers and happy, healing thoughts come your way, as always.

  7. What a proud mama you must be! Congrats on the awards Renn! I'm glad you found an app that helps.

  8. Thanks for sharing Renn's successes with us. The photos are adorable. Prayers and hugs!