I hope your daughter is doing well too, adjusting to the trileptal. AED meds can be horrible.
Savanna is great. It has been a long 4 months since her second surgery, filled with concern that we made a mistake, overwhelming worry about the future, and reinforcement that we did the right thing in the form happiness from Savanna about 90 days post-op (finally!).
I have had interest in Savanna’s story for sharing through other blogs, books, and so so forth. I took the time to re-write her story to date, and it is now another page on the blog. I would encourage to give it a read, and welcome your feedback. You were one of many writers that have inspired me to do a better job putting the words together.
Really happy you have found a new direction with a new church. While we didn’t changes churches recently, I do feel a newfound meaning to my life. Savanna worries me with some things she does, and doesn’t do. She makes me laugh a lot. She can frustrate me to death trying to catalyze a specific behavior of movement in P/T. Most of all, Savanna teaches me every single day. She is teaching me how to be not only a better leader with respect to directing her care, but a better father, a better husband, and a better person.
So nice to hear from you, and your genuine interest in Savanna is heartwarming.
HI Ken! It really sounds like things are on the up for you and your baby. I am sure there are still and will always be challenging and scary times. She is your baby and that alone makes each and every day so tricky and challenging and scary, yet so amazing and wonderful. I feel she has been given to you for a reason and that is because God believed in you being a strong enough man to take care of her in the way she would need to be cared for.
Keep writing, I am so excited about the book idea. It helps you and others to keep sharing what is going on in your life with Savanna. Seizures are so damn scary!!! The brain is such a scary place, isn’t it!?
I pray Abby’s trileptal keeps on working! She starts high school on Aug. 22 and then dance team starts revving up again. My fear is that with all the stress and schedules and running around like crazy kicking up again, something may trigger a seizure….But I also know we cannot live our lives in fear. And I do not say these things to her or anyone.
I’ll keep looking for Savanna’s story. SO happy we chatted!
Amanda Marrazzo 
Hi Amanda,
Your post hits close to home for me today. Looking forward to the future.
-ken
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Hi Ken, thanks! How is your daughter doing? Have not corresponded with you since right before the last big surgery!
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Hi Amanda,
I hope your daughter is doing well too, adjusting to the trileptal. AED meds can be horrible.
Savanna is great. It has been a long 4 months since her second surgery, filled with concern that we made a mistake, overwhelming worry about the future, and reinforcement that we did the right thing in the form happiness from Savanna about 90 days post-op (finally!).
I have had interest in Savanna’s story for sharing through other blogs, books, and so so forth. I took the time to re-write her story to date, and it is now another page on the blog. I would encourage to give it a read, and welcome your feedback. You were one of many writers that have inspired me to do a better job putting the words together.
Really happy you have found a new direction with a new church. While we didn’t changes churches recently, I do feel a newfound meaning to my life. Savanna worries me with some things she does, and doesn’t do. She makes me laugh a lot. She can frustrate me to death trying to catalyze a specific behavior of movement in P/T. Most of all, Savanna teaches me every single day. She is teaching me how to be not only a better leader with respect to directing her care, but a better father, a better husband, and a better person.
So nice to hear from you, and your genuine interest in Savanna is heartwarming.
Warm regards,
-ken
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HI Ken! It really sounds like things are on the up for you and your baby. I am sure there are still and will always be challenging and scary times. She is your baby and that alone makes each and every day so tricky and challenging and scary, yet so amazing and wonderful. I feel she has been given to you for a reason and that is because God believed in you being a strong enough man to take care of her in the way she would need to be cared for.
Keep writing, I am so excited about the book idea. It helps you and others to keep sharing what is going on in your life with Savanna. Seizures are so damn scary!!! The brain is such a scary place, isn’t it!?
I pray Abby’s trileptal keeps on working! She starts high school on Aug. 22 and then dance team starts revving up again. My fear is that with all the stress and schedules and running around like crazy kicking up again, something may trigger a seizure….But I also know we cannot live our lives in fear. And I do not say these things to her or anyone.
I’ll keep looking for Savanna’s story. SO happy we chatted!
Write anytime!
Amanda
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