I am sharing our favorite organizations that help us with medical travel by assisting with airfare, accommodations, and even grants. You can help us celebrate AB’s 3rd Birthday by donating to one of them in her name.
We are sharing all the tips for traveling to Walt Disney World with medical or special needs. Where to stay, how to plan days at the parks, how to take advantage of all the accommodations this magical place has to offer, & more!
Going to the doctor can be scary for your little one! She Got Guts is sharing all her favorite books about going to the doctor to help your kiddo be a little less afraid!
Being in the hospital with your toddler stinks, but I am going to show you how to make the best of it by sharing our favorite toys. Because when life gives you lemons…
Medical hardships demand time, money and emotional strength for a long period of time. The transportation, basic living expenses, therapies and special education needs are not often covered by insurance and take a lot of time away from both work and family. Learn about an incredible organization helping to ease the burden for families like ours.
Every picture tells a story, but some pull us in more than others. They make us wonder what hilarious or heartbreaking thing just happened, and or ponder what’s about to happen next. I wanted to tell our story through our photographs taken during our last inpatient admission at Boston Children’s Hosptial.
Stephanie from She Got Guts is answering all your questions about AB’s Central Line or Broviac Catheter.
Traveling with a medically-complex person is a lot of work. It can be overwhelming and sometimes terrifying. This past May we took our first family vacation to Cabo Rojo, Puerto Rico with a toddler who’s on both Parental and Enteral Nutrition. Although I knew we needed a break, time to get away, quality time together as a family - I was scared #af! I’d be a complete hypocrite if I said I didn’t think about canceling the trip 100 times. When we left the runway, with her home team getting smaller and smaller behind us, I felt a combination of anxiety and nausea. Scary stuff.
Having an infant and now toddler with TPN presents many challenges. One of the most stressful can be keeping her line from pulling. Ask any mom with a toddler who moves on TPN and they will tell you its rough! After 7 line breaks in 13 months we knew something needed to change. We started using Gus Gear Central Line Wrap and it made a positive difference in our life. Not only has it reduced stress, it has increased Addie's safety and make sure she is better protected. I wanted to share why we love Gus and Gear and why every child with a central line should have one...or a few!
Having a child with complex medical needs is never the plan, but rather something into which you’re thrown, head first. When you have a child like Addie, it’s important that you advocate for her ferociously. My role as an advocate for her started in the NICU -It was the first time I really thought that I needed to question the plan. These professionals weren’t seeing what I was seeing. I needed to voice my concerns. It was at that moment I stepped into the role as mother AND advocate, and I haven’t stepped out since!