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!