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...
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...
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...
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 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...
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...