How Can It Be, My Baby is (almost) 3!

That’s right, my little miracle girl will be 3 next week! And truly I cannot believe it. I know all parents say that; I know all parents feel the shock of how fast time goes when it comes to watching their children grow; but birthdays hit different for parents in the medical world. 3 years ago I was thrilled to become a mom, the only thing I’ve ever wanted to be, and dreamed of all the things I would do with my little girl. But life didn’t go as planned. Instead of celebrating Madison’s first monthly milestone at home,...

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...

Why I Love Social Media

I love social media. There, I said it. Yes, it can be full of politics, and petty drama, and rude comments, and insensitive or uneducated remarks. And yes, it can be mindless and addicting in an unproductive but super fun way. (You can bet my hubby & I send each other funny memes while we sit in the same room lol). But it can also be incredibly connecting and wonderful on a much higher level. It can tether us to people and organizations that we may never have known. And for a special needs mama like me, those sort...

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...

My Child is Disabled

My child is disabled. She’s only two years old, and she’s severely disabled. I can’t express into words how hard it is to say that sentence. When we had Madison’s first MRI done post meningitis and saw the damage that awful disease did to her brain, we knew then and there she would never live a normal life. It’s some of the worst news you can receive as a parent. The brand new baby you had prayed for your whole life; the baby that passed every test in the book during pregnancy; the baby that was born healthy; is...

Two Years!

Well, my babygirl is about to turn TWO! TWO! I just can’t believe it. Her birthday comes with such a whirlwind of emotions. When you see your infant almost lose their life, when you live in a hospital room, when you’re forced as brand new parents to have “the” talk about what could happen when you pull a breathing tube, you become faced with the reality that your baby may not ever celebrate a birthday. And yet, here we are, two very hard years later, celebrating all of the strength, perseverance, and love Maddie girl has shown us all...

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....

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...