One year ago today, after almost 70 days of living in the hospital, we returned home with our little miracle girl. It wasn’t at all how we imagined the first 2 months of having a new baby to go. I honestly look back and still can’t believe that I walked out of my house on July 20th , and did not return until September 26th. I can’t believe that we lived in a tiny hospital room, sleeping on a small bed in the windowsill, eating the same take out food, holding our baby in the same chair, constantly checking...
“It didn’t go as planned, & that’s okay.”
“My entire life can be described in one sentence: it didn’t go as planned, and that’s okay.” -Rachel Wolchin Welp, if you follow me on Instagram you know this week didn’t end up like we planned. On Day 2 of Intensive Therapy Madison started cutting a new tooth & things pretty much went downhill from there. She was up all night, cranky, crying, & unfortunately for her, teething pain and the distress she puts herself through also causes breakthrough seizures. She was not herself & NOT interested in therapy by any means. After her morning session on Tuesday we...
Alternative Therapy: The Anat Baniel Method
Today we start a week-long intensive therapy program for Madison! I’m so excited to see how she handle’s it and if it makes a difference in her body awareness. One of Madison’s biggest struggles from her brain injury is her brain’s ability to recognize and move her own body. We all know the brain controls everything, but it literally controls everything. Imagine not being able to move your arms or legs? For Madison, something this simple takes a lot of work. Her brain has to realize, what her legs are, where they are, what they do, how to move...
CBD Oil
The running joke in our house has become that our baby girl has used cannabis before the age of 1, whereas my husband and I never have lol. CBD Oil. What is it? How does it work? Is it legal? Being that I am not well versed, like by any means, in the cannabis industry, I had never even heard of CBD. But, when Madison was diagnosed with Infantile Spasms, and nothing was working, I started doing my research on what other forms of treatment were available. CBD came highly recommended by many mama’s of epileptic children who were...
Meet Madison: Epilepsy
Warning: This is gonna be a long one! Epilepsy is a chronic disorder in which nerve cell activity in the brain is disturbed, causing seizures. This has hands down been the one complication meningitis left Madison with that has been the most difficult to control and the hardest to watch her go through. According to the CDC, about 3.4 million people nationwide suffer with epilepsy, over 400,000 of those being children. It is the 4th most common neurological disorder and often the cause is unknown. There are so many different types of seizures and they vary based on where and how...
Meet Madison: Cortical Visual Impairment
Happy Friday! Madison has been teething hardcore this week, awake at all hours & hating all food, but she’s finally napping so I thought I’d continue my “Meet Madison” series with another one of her diagnoses: Cortical Visual Impairment. CVI is a condition in which there is a decreased visual response due to a neurological problem affecting the visual part of the brain. According to the American Association for Pediatric Ophthalmology & Strabismus, someone with normal vision uses their eyes to take a picture of an object. This message is sent to the brain through optic nerves, and the...
Meet Madison: A Hypothalamus Gone Haywire
Today we had a couple of routine appointments with some of Madison’s specialists, including her pediatric endocrinologist. Many of Madison’s diagnoses relate to her endocrine system. The hypothalamus is a portion of the brain that links the nervous system to the endocrine system via the pituitary gland, and unfortunately for Maddie, hers was damaged by the meningitis infection. The hypothalamus controls many things such as body temperature, thirst, sleep, and various hormones. She sees her endocrinologist approximately every 3 months, and we have routine blood work that needs to be done in between these appointments to ensure her electrolytes...
Headed Home!
Our 1st Hospital Stay Since Meningitis Thursday 8/23, after making it a whole year without needing to be admitted to the hospital for health reasons, Madison was sent to the ER from her pediatricians office after a chest x-ray seemed to show pneumonia in her right lung. While most kids would have been sent home on an antibiotic, Madison’s health history makes things more complicated and it’s usually safer to admit her to the hospital for observation. It sucks, but we’re pretty lucky that we’ve been able to make it an entire year without her suffering from anything serious...
Meet Madison: Learning to Eat
Happy September Friends! Because meningitis left Madison with many complex issues, it could literally take me pages to explain them all. I do however think it’s important to learn more about the things that have affected or will affect her development as she grows. That being said I hope you’ll all bear with me as I post on each complication separately. These posts may seem long, but trust me, I’m already leaving out a lot of detail lol! So, this will kick off my Meet Madison series! I hope you find her as strong & amazing as her father...