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...

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...

So Long Sweet Summer – An Update on Maddie Claire

Fall officially starts next week, and for a girl who has always been all about summer, I’m strangely really looking forward to some cooler temps and a slower pace around here. Once cold and flu season is upon us, I typically schedule less appointments for Madison and don’t take her out quite as much since she’s so high risk. This summer has been pretty overwhelming, sometimes in a good way, sometimes not. But I’ve realized I haven’t shared a real update on Miss M in a while since we’ve been so busy! And what better way than to do...

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...

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...

Equipped for Development!

Finally, after months of me bugging all of Madison’s therapists about the subject, we officially got the process started in getting her some very much needed adaptive equipment! Madison has very low tone, and still can’t completely hold her head up on her own. She can’t sit, let alone stand, yet being in these positions is crucial to her bone and muscle development. So what do we do? We get her equipment that will provide her body the support it needs to sit and stand correctly! Last month we had an appointment with a physiatrist, which is a doctor...

Medicinal Marijuana: Part 1

It’s official, Madison is officially registered with the NJ Medicinal Marijuana Program! We got her card in the mail last night and could not be more excited to start this journey with her in the hopes that medicinal marijuana helps her find seizure freedom. Because marijuana is not legal in New Jersey there’s quite a process in becoming a part of the Medical Marijuana Program or MMP. For one, you must suffer from an approved debilitating condition. In NJ these include: Amyotrophic lateral sclerosis Anxiety Chronic pain related to musculoskeletal disorders Chronic pain of visceral origin Migraine Multiple sclerosis...

Let Her Eat Cake!

Madison ate CAKE! I repeat, CAKE! Today Madison surprised us all and rocked her first real attempt at eating table food! She has been so moody and temperamental lately from teething, I never know how her therapy sessions are going to go. This afternoon at speech she started off pretty cranky, but once she got a taste of that sweet Entenmann’s funfetti cake, her mood perked right up! Since Madison’s success with using the light aide in speech (read more on that here), we’ve attempted to move her lessons into the CVI room. This room is painted black and...

Vision Therapy

So you may have seen me share the below video of Maddie girl using the switch pad earlier in the week (sorry not sorry I keep posting about it!), but she illustrated some awesome new brain connections to us in her therapy session last week! She’s still been teething and quite frankly, pretty moody, so when we went to speech on Monday I wasn’t sure how the session would go. She wasn’t too interested in eating, but because her therapist is awesome, she suggested we work on vision since Madison was awake. Madison has CVI, which is a brain...