So we have had a crazy busy two weeks my friends! It’s been nonstop with various therapies and doctor appointments. I used to be someone who was so organized and on time, and now I never know what time we have anything #momlife lol. So I thought I’d pop in and update everyone on all of the craziness! Early Intervention Last week Madison had her yearly re-evaluation for her Early Intervention services. A developmental specialist came to meet with Maddie and tested her on various motor and social skills. In true Maddie form she slept through the session, so...
Meet Madison: The Nap Queen of New Jersey
Although Madison hasn’t been diagnosed with anything specific regarding sleep issues, this has been one of our biggest struggles with her post meningitis. While most parents find themselves googling for ways to get their child to sleep, I suffer from the opposite problem with Maddie; she sleeps far too often (during the day).. somehow at night she always seems to decide to wake up, just like all kiddos lol. When we were transferred to CSH for therapy last year after our stay in the PICU, Madison often slept through her therapy sessions. It was a really difficult month. John...
Praying for Poop
What.A.Week. Actually, if I’m being honest these last two weeks were something else. If you’ve been following along you know we had an intensive therapy week blocked out for Madison 2 weeks ago already that got all messed up due to teething pain. Welp, turns out it wasn’t just teething that was bothering Maddie girl. Her tooth had cut by the weekend but she was still crying in agony ALL day and night. The way she was arching her body indicated to me it was stomach related, but of course you never know with her! Also, unfortunate timing, but...
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...
Our Life Forever Changed
Hi! Kelly here. Wife. Mama. Jersey Girl. Where do I begin? How do I kick this thing off? I thought of doing some research on starting a blog and what your first blog post should be about so that I could start this new adventure off right. You see, I’m the kind of person that researches EVERYTHING before doing ANYTHING (like never been to a restaurant without having looked up the menu first kind of person), but if there’s one thing I learned this past year it’s that no matter how much I research and plan something, at the...