Having a medically complex toddler with special needs can be a lot to manage. There are doctor’s appointments, therapy, home visits, ordering and managing medical supplies, and taking care of prescription medication. I am going to share why medication management is so important and how we make it easier!
When your child has a feeding tube, trach, central line, oxygen, sensory issues,etc. the struggle is real when it comes to finding appropriate clothing. I am sharing all the problems we have with clothes and how we’ve figured out a way to solve those issues.
Eating foods by mouth is a challenge in our house and we are always trying to make this more successful for our daughter. I am sharing my new favorite plate we are using to increase the variety of food and decrease picky eating!
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!
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.
Dressing a child with a feeding tube comes with its challenges. Where does the tube go once the clothes are on? If you have to access the tube, do you have to undress them completely? When they become mobile, how do they carry their own feeds? If it's hot, how do you keep the formula at the right temperature? I've been rigging clothing myself by cutting holes in her clothes, I limit the types of clothes she wears, only button up pajamas, no zippers please, etc. But it's not perfect, the hole gets wider with wear and I cannot sew like some of these creative tubie Mamas. I decided to check out some brands that make adapted clothing and other feeding tube accessories to make our lives easier and make our kids safer.
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.
Parents of children with feeding disorders or difficulties can undergo debilitating stress surrounding food, mealtimes, eating, and even social gatherings where food is served. Each family is different, and their journey is unique. Children can be fed and get their nutritional needs met through a variety of ways.
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!
The reason for the Patriots' superiority is immediately evident. The reason for Boston Children's is as well. I won't spend any time bashing Hopkins. They're an incredible hospital, that does great things for their patients. We're lucky that we've been close enough to have Addie's care handled by their team. They've gotten us through countless surgeries, put her on a path of growth, and have been there many times when we've needed them.
But just as the Dolphins aren't the Patriots, Hopkins is not Boston.
Adeline struggles with chronic medical issues, multiple diagnosis’s, and happens to look “normal”. From the outside, she does not appear sick. Itcan be frustrating, unhelpful, and sometimes a struggle to get her medical or early intervention team to get the entire picture. I wanted to share a little bit of what we experience and then ways you can be supportive to a family/person who deals with an invisible disease or disability.
Someone you love dearly has an invisible illness, and it can be difficult to know how to support them. Their illness can be confusing, they do not look sick, they do not always have answers to their problems, seem to have endless appointments and procedures, and it can be hard to know how you can help. Some days they feel great and lead a "typical" life, their instagram is filled with smiling pictures and quotes about overcoming struggles so you may even think they are "cured." The funny thing is about invisible illness, is that most of these disease people will have to deal with for their lifetime. They learn how to manage the symptoms, they can have surgery to correct things, they have good days, but it may be something they may to contend with for a lifetime.