Don’t Forget About Us

For the past 2+ months most of the world has gotten a small taste of what it’s like to be a medically complex family. Everyone has felt the fear of germs, stayed in the confines of their home when they’d rather be out and about, been considerate of those with underlying health issues, and began being more conscious about the spread of germs. But now that the world is slowly beginning to open up again, will all of you remember this? It is my fear and the fear of most special needs families that you won’t. I’ve seen so...

Just a Cold

I know you’ve heard it a million times. I know you’re probably tired of hearing it; the many moms pleading with you to stay home when you’re sick. But believe it or not this very simple concept seems to fall on deaf ears over and over again. For some reason people are not understanding why they need to stay home for a measly cold. They continue to claim they’re “fine.” Their child with the runny nose and slight cough, is “fine.” It’s “nothing.” It’s “just a cold.” Well I’m here to tell you it’s NEVER just a cold. A...

Hospital Hell

It’s hard to believe an entire week has already come and gone. One minute we were in Rhode Island on a mini vacation, and the next we’re in the hospital. I lose all sense of time when we’re in the hospital with Madison. Sitting in the same chair EVERY SINGLE DAY is hard. Sleeping in a windowsill is hard. Trying to comfort your child while they’re hooked up to multiple machines is hard. It’s just all around hard, and the days sort of just blur together. The first few days of a hospital admittance tend to be the scariest...

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...

The Domino Effect

Epilepsy sucks. Diabetes Insipidus sucks. Hypopituitarism sucks. All of these conditions are difficult to mange on their own, but put them all together and the complexities can be overwhelming. With so many systems out of whack, a tiny change in one can greatly affect the others. Whenever something is “off” with Madison there’s never an easy answer as to why. We always have to look at the whole picture and it can make things quite challenging to say the least. So far, we’ve been pretty lucky in her care with most of her systems running smoothly and levels stable....

Surviving Maddie’s 1st Cold

Happy December! I can’t believe it’s already December. This year has gone by so fast! Although I probably say that every year.. We’ve been so busy recently between various doctor appointments & therapies & Thanksgiving! And to top it all off, Madison wound up developing her very first cold. We really lucked out last year with her not getting sick at all. Last winter she was on a steroid seizure medication that pretty much wipes your immune system, so we never took her out, like ever. We had no one over. And the few people that were allowed had...

Madison vs. the EEG

So I know I owe you guys all the details of our first family vayk, & I promise I’ll get to that, but in true Madison fashion this week has thrown us another unexpected curveball! Yesterday Maddie and I were excited to get back into our normal routine after returning home from vacation over the weekend. Before our day really began I touch based with her neuro team to update them on the status of the ketogenic diet process and to share some updates on her current seizure activity. When we met with the neurologist at CHOP on Halloween...

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...

Headed Home!

Our 1st Hospital Stay Since Meningitis Thursday 8/23, after making it a whole year without needing to be admitted to the hospital for health reasons, Madison was sent to the ER from her pediatricians office after a chest x-ray seemed to show pneumonia in her right lung. While most kids would have been sent home on an antibiotic, Madison’s health history makes things more complicated and it’s usually safer to admit her to the hospital for observation. It sucks, but we’re pretty lucky that we’ve been able to make it an entire year without her suffering from anything serious...