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...

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...

OBX 2019

Vacationing with a special needs child can really be hit or miss. Madison’s stability varies and unfortunately when you book a trip there’s no way to know if she’ll be having a good week or a bad one by the time that trip rolls around. We traveled to Florida in November and while it was relaxing to soak up the warm weather, Madison wound up having awful nights almost everyday. She barely slept, had seizures, and seemed uncomfortable a lot during the trip, which made things hard for John and I. We booked a beach house in OBX knowing...

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...

Medicinal Marijuana: Part 2

Let me just start by saying, epilepsy sucks. I don’t think I could ever describe how painful it is to see your child have seizures every single day. How stomach turning it is to pump them full of strong and serious medications day in and day out. Medications that haven’t even been able to fully control their epilepsy. Yet this is the fate that many epilepsy parents face. CBD oil has been known to be somewhat of a miracle cure for many epileptic patients. There are tons of variations and ways to administer it. Some find seizure freedom with...

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...

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....

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...

2018 in Review

I’ve been racking my brain trying to determine how to write this post. How to reflect on a year that has in all honesty, been incredibly hard on our family. How to really sort all of the bad from good and heartbreak from hope. I want to start the new year on a good note, which is hard to do when the end of this year has been particularly painful for us. So I’m gonna start with the not so great moments in the hopes that if I save the better moments for the end, those will be what...