2 Years ago today, I was in a hospital with Savanna on Christmas Eve, a few days out from the life-altering news Infantile Spasms diagnoses bring. Like nearly all parents blindsided with this situation we followed doctors recommendations for a treatment plan without question. In reality, we were just trying to survive.
2 years ago, we didn’t know our baby had focal cortical dysplasia type I and IIa resulting in a lesion spanning the temporal, occipital, and part of the parietal lobes in the left hemisphere of her brain.
2 years ago, we didn’t know our baby would experience refractory complex partial seizures that would leave her severely developmentally delayed. The seizure activity was so frequent, her potential development was largely unknown.
2 years ago, we initiated advanced genetic testing for which we are still waiting on results today. Off-the-record phone conversations have revealed no definitive genetic cause, for reasons outlined in this post.
2 years ago, we had no idea our baby would (or even could) undergo radical surgery to rescue her developing brain from the intense seizures.
2 years ago, I had no idea that Savanna was in a small sorority of patients eligible for surgical treatment and how it is such a blessing.
2 years ago, I thought I was good father. I thought I was a good husband. I thought I was pretty smart. During these last two years, Savanna’s condition has cleansed me of many of these misconceptions. I am now better at all three. Absolutely nothing can prepare you for this situation as a parent.
2 years ago, I never dreamed I would stay at home and raise children, lead the care of a special needs child, attempt to manage refractory seizures; learn about epilepsy.
2 years ago it was Christmas 2011. I brought our baby home from a 9 day hospital stay that included her first big ‘diagnosis day’. You can read about the emotions of that day here (not well written, sorry!) I thought it was ‘over’; meaning, finish the ACTH and then she is okay right? For some yes, not for Savanna.
Today, I marvel at the progress modern medicine has allowed her to experience. Faith in God, following his guidance, and trust in his leadership has proved righteous.
Today Savanna continues to impress us with her abilities that advance daily. Delays are still present, but far less noticeable.
Today, Savanna still has challenges, but not seizures. That is nearly 210 days!
Today Savanna is not cured but, her epilepsy is in remission.
Today, we as a family thank the Lord for his guidance and support. I thank myself for listening.
Today, I help others blindsided with this situation. Savanna’s outcome thus far is not the same for all, and this knowledge is humbling.
We are in the middle of a trip to Kentucky and Virginia. The usual sicknesses have afflicted our family somewhat. It happens when you transplant an entire family to a new location. Overall, we are healthy and thankful for the journey. Being around family is great at Christmastime.
Have a Blessed Christmas everyone and safe travels!
Merry Christmas Ken…I’m always impressed by your steadfast optimism and and spirit. One of the good ones and an inspiration to many.
After I was included in a fraternity I didn’t intend to join, I have become humbled by family stories, such as yours.
I realize how not every family has the situation unfold the way ours has unfolded thus far, for various reasons.
I appreciate your feedback, and have a tremendous amount of respect for you. Thank you.
Ken, I’m not sure you got my last post, so I’ll try again. If I don’t manage to actually get this to you, – no more tries. Merry Christmas to all. Ken, you must write a book. I’ll buy the first one! There is always an underlying optimism, hope, & faith in all you write-I read every word!
Merry Christmas! I am trying to figure out how to write a book, but it is just not that easy. One day.
We have been very blessed with how Savanna’s situation has unfolded thus far. I want all to know, it is not what I did, but what He has done through me to lead Savanna to the appropriate care.
Yes, Savanna is surely a miracle!!! And her parents are the reason she is doing as well as she is. My hope is that you, Becky and all of your children have the Merriest of Christmas’s and a safe, happy and especially healthy New Year! Love to all!!!
Merry Christmas Connie!
Our trip this year has been great so far. We would enjoy a visit while we are here in Louisville.
Ken and Becky, As I sit here and read all about Savanna’s journey and realize the troubled times you all have been through as a family I can’t help but thank God every day for his generous miracle for Savanna. Early on it all seemed almost hopeless to me that anything could help her and it made me feel really sad to think of what you all were going through. But prayers were said daily. I even did several novenas for savanna. All of our prayers truly helped. God was there all the time listening. I remember the night before her last surgery laying in bed praying for a miracle for Savanna. I couldn’t sleep. I couldn’t get her off my mind. I felt so bad for her and then I thought about you all. As bad as I felt that night was nothing compared to what you all were going through. I started praying for you, Ken and Becky. Somehow. Hours later I dozed off. Was so relieved to here a few days later that all went pretty well with the surgery. It just made me realize that God was there in that surgery room doing his thing. Seeing you all last night Christmas Eve was so good. Savanna is looking so much better than I even expected. You have a beautiful family and I will continue to pray for Savanna. I know you all said she still has some not so good days now and then but take each day one at a time and enjoy every moment to the fullest. So, Merry Christmas and lets hope that 2014 will be a wonderful year for the Linningers. Jane
Sent from my iPhone
It was so nice to see you all they other night. Sorry we didn’t get more of a chance to chat. Thank you so much for all the prayers. We are blessed.
2014 is going to be a great year for Savanna!
What a great post! I’m sorry we missed Christmas eve! I hate that we didn’t get to see you guys. Have safe travel. Christi
Thank you. We missed seeing you at Barbara’s. I am trying to get everyone together maybe at Whitney’s place before we leave. I hope we get to see you all before we leave.
If not, have a great New Year!
Thank you so much for sharing your story, Ken. As a parent, that must have been quite the roller coaster of a journey, and I am so glad that Savanna’s seizures are currently in remission. She is so lucky to have such a supportive parent like yourself!
I know that has to be the scariest thing to see your baby go through that I know that same feelings son was diagnosed with infantile spasm and I went to a neurologist and she didn’t have a diagnosed so I took him to another neurologist and she was able to get him on ACTH and it control his seizures but at night when he slept he still have them so now he’s on a new medicine. But I just want to say how happy I hear how your daughter is doing and to let you know I have faith that my son will improve. Thank you for your inspiring message because I figure that he wasn’t going to be normal but u have given me hope. God bless you and your family
Sorry for such a late reply. Thank you for your kind words. We are blessed Savanna is doing so well. I hope your son improves. Give it time and don’t be afraid to push the doctors for more help if you need it. Best wishes.