November is epilepsy awareness month! Epilepsy is a disease that has stolen so much from my family, and from so many families that I know. It’s a disease I’ve seen take the lives of children. A disease that has stolen skills, development, growth, and joy. A disease in which research is underfunded and yet it affects 65 million people worldwide. Please take the time this month to learn more and help us spread awareness! Madison’s Story Madison developed epilepsy as a result of meningitis at 11 days old. She had her first seizures subclinically while she was sick, meaning...
An update on Big Sis!
We’ve had lots of baby spam over here lately (#sorrynotsorry), but things are happening for big sis too! Believe it or not, it’s time for Madison to start SCHOOL! Well actually, she should have started already but coronavirus came and placed us in limbo for the last, what, 8 months now?! Madison has been a part of the Early Intervention program since she was just a few months old which provides kids with therapy opportunities through the age of 3 at which point they would transition to preschool. Madison turned 3 over the summer and so we had begun...
Epilepsy Awareness Month
November is epilepsy awareness month! Epilepsy is a disease that has stolen so much from my family, and from so many families that I know. It’s a disease I’ve seen take the lives of children. A disease that has stolen skills, development, growth, and joy. A disease in which research is underfunded and yet it affects 65 million people worldwide. Please take the time this month to learn more and help us spread awareness! Madison’s Story Madison developed epilepsy as a result of meningitis at 11 days old. She had her first seizures subclinically while she was sick, meaning...
A Happy Maddie
Alert. Clear. Vocal. HAPPY. These are a few of the words I would use to describe Madison lately, and it’s been wonderful! What’s changed? Well not much, aside from starting a new CBD and weaning one of her seizure meds a few months ago. We’ve also finally figured out a good combo for keeping her constipation under control, and her teething spell has just about ended. Okay, so maybe a few things have changed! Regardless, she’s been a new child lately and John and I have been soaking in every minute. One of the worst things about epilepsy, is...
World Meningitis Day
Today is World Meningitis Day. A day to help spread awareness about a disease that has stolen so much from our family, so much from my little girl. Madison was born perfectly healthy, but everything changed just 11 days later. She didn’t wake to eat, her skin looked grey, her eyes became empty-as if her soul was sucked right out of her, she spit up her last meal, and began grunting when she breathed. Within moments we knew something was terribly wrong. We had no idea just how wrong. We had no idea our entire lives and every dream...
Keto Update
If you’ve been following along you know we were hoping to start Madison on the ketogenic diet as a means to relieve her seizures. The diet has a good success rate, especially for the type of seizures Madison has, and when effective can allow for a reduction or removal of medications. I attended a seminar all about the diet, it’s risks, the process, efficacy rate, etc at CHOP back in October. Read more on that here. It was super informative and we hoped to get Madison admitted in January or February if the team felt she was a good...
Fat for Fuel: The Ketogenic Diet
This past Monday I attended a Ketogenic Diet Seminar at CHOP, which is required by the hospital in order to start the diet as a part of their program. The class was presented by the entire keto team including the director of the program (who we’re actually meeting with next week), nurses, dietitians, a social worker, chef, and even a mother of a child in the program. Why would we need to start the ketogenic diet for Madison? And what is this diet? While it’s becoming more mainstream and fad-like, it actually originated as a way to help those...
Praying for Poop
What.A.Week. Actually, if I’m being honest these last two weeks were something else. If you’ve been following along you know we had an intensive therapy week blocked out for Madison 2 weeks ago already that got all messed up due to teething pain. Welp, turns out it wasn’t just teething that was bothering Maddie girl. Her tooth had cut by the weekend but she was still crying in agony ALL day and night. The way she was arching her body indicated to me it was stomach related, but of course you never know with her! Also, unfortunate timing, but...