It’s Feeding Tube Awareness Week, and how fitting, because our brave girl will be getting her g-tube on Friday. What’s a g-tube? A g-tube or gastrostomy tube is a feeding tube placed in the abdomen to deliver nutrition directly to the stomach. There are lots of conditions that might cause someone to need a feeding tube either temporarily or permanently, including: cardiovascular, developmental, endocrin, genetic, GI, immune, neurological, metabolic, swallowing, respiratory, and structural. In the medical world a feeding tube is low on the list of scary interventions. Madison has been fed by an NG tube many times. We...
National Epilepsy Awareness Month 2020
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...
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...
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...
Always Worth It
If you follow me on Instagram then you know I spent last week in Maine for a little fall family getaway! We had this trip planned for months, and almost cancelled it countless times because so many things have been popping up, but ultimately decided we deserved some time away together. While we were away I decided I wanted to share a blog post about the importance of making memories when you have a medically complex child, but as our trip ended with a tough day and then a TON of traffic leading to a huge seizure filled meltdown...
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...
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...