7 years ago today, Rebecca and I acted on a decision, to operate on our child in such a way, that there was no going back. 7 years ago, we said goodbye to our daughter not knowing the outcome. As the day unfolded, it seemed as though we were in a vehicle crashing down the side of a mountain in slow motion. With no control or understanding of when or where we would land. I just wanted the dream to end.
And then, some 14 hours later, the dream had ended. We walked away from the crashing car to a harsh, new reality. We did everything possible to help our child stop seizing. So did the doctors. The aftermath of our decision was upon us. Most want to think this is all roses and fairy tales. Not so for some – for us.
In the PICU, the wake of devastation smashed against us as we floundered trying to help Savanna. Emotions ran high as Savanna struggled to breathe. Tensions mounted as the doctors considered their options. Rebecca yelled at one doctor out of desperation. The doctors seemed embattled about what to do and what not to do. We felt lost. Time got really small.
Looking back, so many images and memories from those days are vivid in my mind – the good and the bad. Time has faded those emotions, but pictures can bring it back in a split second.
Time also provides opportunity to reflect on our overall situation. After all this time, I have found my calling, my purpose, and truly had no idea before this experience. I now realize our participation in God’s design is on purpose. The struggle was deliberate and an opportunity for God to show His grace. God’s plan is for none of us to know ahead of time outside of the fact that if we believe in Jesus, we will one day have eternal salvation. It is up to each one of us to find the real Joy in life – to find our purpose.
That time in the hospital and the difficult recovery that followed has all moved on like sand falling through the hour-glass. And here we are.
7 Years Later.
So what does that look like for Savanna? And, for our family?
Today, Savanna thrives. Savanna is full of life. Today marks 7 years since she had an unprovoked seizure, and about 6 years off medications. Amazing!
Savanna can enjoy life in a way we once only barely dared to hope for. Savanna rides a scooter, and a bike. Savanna can roller skate. Savanna can ride a Hoverboard (I cannot)! Savanna can swim pretty darn well, and she can climb a tree better than most kids twice her age.
All of this awesomeness is not without real challenges. The consequence of removing the left occipital lobe is right sided dense homonymous hemianopia. A bunch of words meaning that she does not see out of the right half of either eye. Weird right? We have learned this plays a large role in education, specifically understanding our language. Savanna does read, but still a few levels lower than the standard for our district’s curriculum. See the reading video below (recorded the day of this post)!
The consequence of removing the temporal and parietal lobes also seems obvious in a lesser way. Savanna has less presence of her right side. Often you will see her trying to write or do something without using her right hand to help. Prompting will bring it into the situation, but it is noticeable. Her fine motor skills seem fairly typical, but when tested by modern metrics, there’s still a clear struggle.
We attended a pediatric epilepsy surgery conference in July of 2019, the only one of its kind in the world. I was a guest speaker during a research meeting prior to the conference. The Seize Hope Fund was a sponsor! Thank you to all who have contributed.
Presenting Savanna’s story was a lot harder than I thought, speaking to a room full of doctors and surgeons – some of whom I had read about many years prior. During the conference we got the opportunity to talk to adults who had similar surgeries as infants and experience them in a public setting. It was truly amazing. We met some amazing families, some for the first time in person having “known” them online for many years. We left realizing there was more that we could and should do to help Savanna despite how well she has been developing.
We made a new connection with a pediatric neuro-ophthalmologist, who has helped us, as we strive to understand and maximize her vision. There are a lot of unknowns here and different schools of thought on how best to foster Savanna’s vision as we navigate these final years of critical development.
We put Savanna through a neuro-psychological evaluation – her first one. This is a comprehensive assessment of a child’s developmental level and psychosocial behavior, with targeted recommendations for interventions and therapies that use her specific strengths to address her weaknesses. Armed with this information, we can better craft a plan that suits her needs. We also have recommendations for what we can do outside of school to help Savanna.
That said, the report is sobering from the sense that when compared to typical kids, she has many areas of very weak performance. For example, processing speed, how quickly Savanna can see something, absorb what she is seeing, have her brain interpret it, formulate a response, and execute that response, was scored in the VERY LOW, category. This puts her IQ measurement in the bottom 5th percentile based on a “typical” test. In some ways, this makes a lot of sense, but in others, it gets thrown out the window, as our Savanna is anything but “typical”. She had a few AVERAGE to ABOVE AVERAGE ratings in some aspects of working memory, as some would agree if you know her. A lot of mixed feelings interpreting these results – but an excellent baseline.
Savanna was diagnosed with ASD (Autism Spectrum Disorder) early in her journey. We honestly thought somehow we had intervened on, and possibly reduced, the ASD through the brain surgeries and 1000s of hours of subsequent therapies. And, we may have. However, the neuro-psych evaluation indicated that ASD is still a very valid diagnosis for her. While disappointed, we cannot deny some of her behaviors and mannerisms. It also indicated some impulsive behaviors consistent with ADHD (Attention Deficit Hyper-activity Disorder), another layer to the challenges.
All of that said, seeing Savanna learn and enjoy life is a blessing from God, and God alone. Yes, we have prayerfully made decisions and tried our best to honor God through this entire journey. In doing so, I talk with families on a regular basis about many aspects of this journey. We also work with an organization called The Brain Recovery Project. Their focus is after the surgery: How to best help these children after the surgery. No one else addresses this in a more comprehensive way. Rebecca and I are proud to support them and represent them.
I leave with a bunch of pictures and videos! Enjoy, and God Bless.
When you watch Savanna with this basketball, you see her challenge from center to her right side.
Congrats guys! She looks great. Thanks for all you do to help others with epilepsy
Nitin Tandon, MD, FAANS
Professor, Vice Chair, Department of Neurosurgery
Co-Director, Texas Institute of Restorative Neurotechnology
McGovern Medical School at UT Health, Houston TX.
Director, Epilepsy Surgery Program
Mischer Neurosciences Institute – Memorial Hermann Hospital
Adjunct Professor, Electrical and Computer Engineering, Rice University
6400 Fannin Suite 2800
Houston, TX 77030
713 704 7100
6431 Fannin Suite G550
Houston, TX 77030
713 500 5475
From: Savanna’s Journey
Reply-To: Savanna’s Journey
Date: Thursday, April 2, 2020 at 9:18 PM
To: Nitin Tandon
Subject: [New post] 7 Years Later
**** EXTERNAL EMAIL ****
kenlininger posted: ” 7 years ago today, Rebecca and I acted on a decision, to operate on our child in such a way, that there was no going back. 7 years ago, we said goodbye to our daughter not knowing the outcome. As the day unfolded, it seemed as though we were in a vehicl”
She looks wonderful! Such a long journey with amazing progress. Her sense of balance on the bike, scooter, etal. is incredible. You & Rebecca are doing such an amazing job with her. Thank you so much for the update! Such a beautiful little girl!❤️
Oh my goodness this post brings such a little tear to my eye !! Tears of joy at the AMAZING gift Savannah is to all of us. She has come so far and still continues to work so hard each day and show us the beautiful little girl that she is. Congratulations on 7 years seizure free 🙂 she is truly a miracle !
Sent from my iPhone Lindsey Havel, PA-C
Thank you so much, Ken, for everything you have done and continue to do. Thanks for sharing your story and your talents and your faith with the world. God bless!
Sent from my iPhone
4/3/2020Ken and Becky,Thanks for the update Ken. That day 7 years ago was a memory I’ll never forget. So proud of you and Becky with how you took charge of your great challenges during the past 8 1/2 years dealing with whatever needed to be done, and your great faith in an ever loving God thru it all. I remember my prayer that night before Savanna’s surgery in your garage, holding Savanna, crying uncontrollably and somehow remembering Psalm 46, ending with “Be Still and know that I am God” and telling Savanna that, and that He would take care of her, and then she quieted down immediately. I’ll always consider that as a miracle and a direct message to me from that God, who we sometimes doubt, and that He is in charge. God bless you and the reat of the family.. Ray (THE REALTOR) SchmittTEAMWORK KY REALTY, LLC1302 Holsworth LaneLouisville, KY 40222Cell (502) 243-5587email Ray@RaysKyHomeSales.comWebsite http://www.RaysKyHomeSales.comI‘m Never too busy to help you or a friend with a Real Estate Issue !
Absolutely AMAZING! Prayers answered- thank you for sharing,Dave
Wow Kenny – I just got around to reading this and opening up the attachments. Super impressive. That girl is certainly not missing anything when it comes to balance! And, certainly fearless!
On Thu, Apr 2, 2020 at 10:19 PM Savanna’s Journey wrote:
> kenlininger posted: ” 7 years ago today, Rebecca and I acted on a > decision, to operate on our child in such a way, that there was no going > back. 7 years ago, we said goodbye to our daughter not knowing the outcome. > As the day unfolded, it seemed as though we were in a vehicl” >
hope you and Rebecca and kids remain well during this crazy health crisis.
all the best from NJ,
Office Hours Spring 2020 Tues: 10:30am-12:00pm (starting Feb. 11)
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Sara S. Poor
Associate Professor and DGS
Department of German
211 East Pyne
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Amazing! That seizure free anniversary video brought tears to My eyes.
Une histoire difficile mais qui fini bien. Beaucoup d’émotions à vous lire.
Ont ressent l’amour qui vous unis.
Bonne continuation et belle vie à vous tous.
Today I randomly remembered reading about this little girl while I was on the Facebook infantile spasms page. I remembered her name as well yours (ken) so finding the blog wasn’t hard.
It’s been a long time since I read your page. I am AMAZED at how well she is doing. Absolutely incredible. So happy for your family 💜
Amanda, thank you for the comment. I am working on “10 years later” posts now! Time goes so quickly these days it seems.