Florence Update

It's been a month since we returned from our stay at the Cleveland Clinic. We've been quiet on the updates because there really hasn't been much to report. Florence went through one IVIG treatment at Duke 3.5 weeks ago. We saw some successful result with that treatment for about 2.5 days where her seizures were down, she slept well and had more energy. But as quickly as the success came, it also went. And we've had a few sporadic troubling days where Florence is so wiped out that she really wants to sleep and just be.

Today, Florence was admitted to UNC Chapel Hill hospital for the Ketogenic Diet. You may think "Diet" can't be all that difficult but this diet is very scientific and precise as we will have to learn how to mix certain foods like fats, carbs and sugars to provide her a meal where what she burns is mostly fat. We purchased a gram scale and will begin the education tomorrow. She is fasting today and is doing okay. It's so hard for a 4 year old to fast but Florence is so tough and seems to weather all of these challenging situations heroically.

She will be at UNC until Wednesday. Then she comes home and hopefully will have her second IVIG at Duke either Thursday or Friday. We are desperate to find a treatment to help her with whatever disease is causing the seizures and everything else. She is still not walking or sitting independently.

All that said, she still finds a smile, a giggle, a mischievous act to bring everyone around her to pieces! You can't help but love this little girl!