Logan has taken us on a journey that I wish on no parent but that I am also very thankful for. What a joy she is and what a worry at the same time. Logan has faced more in less than 2 years than most will battle in their lifetime, bouncing back from whatever comes her way. Possibly because she is very stubborn. She loves all her baby dolls and stuffed animal, and spends much of the day caring for them, insisting on bringing multiple “friends” with her everywhere.
The first 4 months of Logan’s life the term we always heard from doctors at all of her checkups was "perfect". Perfect height, weight, eating, sleeping, milestones - everything first-time parents could ever ask for, until at almost 5 months old things changed overnight. Sleep was the first to go, and then the first seizure. Within 24 hours of being sent home from the ER with monitoring instructions we were back by ambulance with another seizure and our first of many hospital stays, lasting 4 days but providing few answers. Finally, after a battery of tests, they were ready to release us with little information other than things seemed to be okay. As we were preparing to leave, a doctor came back in, telling us they noticed something on the EEGs that did not seem “right.”
After what felt like years, we learned that Logan has Dravet syndrome. In one fell swoop, our daughter who appeared to be perfectly healthy was diagnosed with this rare syndrome that affects 1 in every 15,700 children. While this diagnosis brought us a name for what was happening it still leaves us with so many questions. What about Logan? What will her outcome with this disease be?
It is not only the diagnosis and the unknown that make life so difficult, but for children like Logan and their families, it is the minute-by-minute worries that are difficult to handle and absorb. For us, life with Logan can be like living with a ticking bomb. We are always living under the shadow of another seizure which leads to more complications and problems. Logan comes with a long list of do's and don'ts that amount to our daily tasks being overwhelming as they consume our time and energy. Thankfully, diet therapy under the guidance of our amazing doctors at Cook Children’s Medical Center has given us some hope.
In less than a year’s time Logan had tried 3 medications and had numerous hospital stays and ER runs. After implementing the Modified Atkins Diet shortly after Logan's first birthday we finally have some hope. I am so thankful to say that we closed out 2023 with only three seizures which was a huge improvement for the 22 she suffered in 2022. This success did not come without a strict diet, careful monitoring, and lots of activity regulation when she shows signs that she is “off.” We happily adjust the days to fit Logan and her seizure threshold but we pray for the day that we can freely let her play at the playground, jump into a swimming pool, or even take a bath, carefree. We believe that this day is out there for Logan and others like her which is why we support the work of DSF, and the doctors and hospitals that are trying to better the lives of the children and families that face this disease.
Today, Logan’s constant monitoring is a reality; it is our responsibility and our lives. The more we can lessen the seizures, the better it is for Logan. But we celebrate Logan today and each day, and we know that she is perfect no matter what her perfect looks like. We have immersed ourselves in learning everything we can about Dravet syndrome and are trying to bring awareness about this syndrome to everyone we can. Logan has totally changed our lives and we are thankful for every second we have with her.
