We were home again, and it felt amazing. This time my mom had to go back home, so we were completely on our own, but we were so grateful to be home. Don’t get me wrong, it was terrifying and incredibly stressful, but there is just something about being home with your baby, without all …
Insights into Special Needs Parenting: The Most Dreaded Appointment
Teddy sees a lot, I mean A LOT of people in the medical/therapy field. He has seen specialists in Louisville, Boston, Cincinnati, and we even flew to Arizona for one. He sees a cardiologist, pulmonologist, gastroenterologist, otorhinolaryngologist (ENT), nephrologist, urologist (2 different kinds actually), orthopedist, endocrinologist, neurologist, neurosurgeon, ophthalmologist, developmental pediatrician, regular pediatrician, dentist, regular …
Chapter 10: Back Again
There we were, back in the same room we had just left, scared and defeated. Seeing Teddy connected to oxygen and monitors again was heartbreaking and I just kept thinking over and over “what did I do wrong?” We failed. We couldn’t keep our baby safe at home. Were these logical thoughts, no, but at …
Chapter 9: Two Beautiful Days.
We drove away from the hospital full of excitement and fear. Being a first-time parent is scary enough, but being a first-time parent of a child who is reliant on the machines they are attached to is terrifying. We felt confident we could do it, but honestly, we weren’t sure exactly how. But as with …
Chapter 8: Home, for the First Time
I think as any parent can attest to, the day you get to bring your baby home is one of the happiest and scariest days. You are so excited to be able to be home snuggling your baby, you are also worried about how you will manage to do the whole parenting thing. For a …
Insights into Special Needs Parenting: Okay, okay, you’re right. It is hard.
After writing this post, I was having second thoughts about posting because I didn’t want it to be taken the wrong way. I realized though that if I was going to write a blog about Teddy’s life, I needed to be honest and open about all aspects. So let’s get real… When someone first finds …
Chapter 7: Who Needs Oxygen? Not me!
Because Teddy had so many things going on, the Caudal Regression Syndrome diagnosis got pushed to the back burner after being told. There was nothing we could do about it surgically to repair CRS, so any interventions he would eventually need to increase his quality of life would come as he got older, and we …
Chapter 6: Being Told He May Never Walk
Of Teddy’s plethora of diagnoses, there are two that caused the most fear and uncertainty for me at the time they were given: Caudal Regression Syndrome and Hydrocephalus. Shortly after Teddy turned a month old, he was wheeled out of his room for his first official MRI. It was clear just by looking at him …
Diagnoses Explained Series: VACTERL Association
In this post series, I will explain each of Teddy’s diagnoses in detail, with more medical terms and imaging if I am able to find them. These will be more technical posts, but for those interested, we hope it will educate more people on these rare conditions, so as the rate increases each year, there …
Welcome
Welcome to Narrating Teddy’s Remarkable Life! If you are new to Teddy’s story, you can start at the beginning by clicking on Teddy’s Story in the menu bar. You can also see fun updates, read about his diagnoses, and our experiences in special needs parenting by clicking on those categories. New posts will show just …