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.

Medical Dad's are often unmentioned, underrepresented, and underappreciated.  But today, I want to share some of the kick a#$ things you do to take care of our medically complex girl.

We are sharing 20 ways you can help increase language for your little one at home!

As I see Addie grow, learn, change, and explore each new day - I know exactly who is responsible for it. I'm not there all the time. I can't be with her every waking hour. But Steph is. And as I sit there every day, amazed at how far Addie has come, I can't help but be thankful that she has the mother she has. Our child is fearless. Our child has a fire for life. Our child is smart as a whip. Our child perseveres. Our child loves. Our child laughs. Our child is who she is because of her mother.

This is part one of my Ultimate List of Sensory Toys and today I am sharing my favorite toys and activities to give your kid Vestibular Input. These activities are good for ALL children but especially children with sensory processing difficulties.

She Got Guts shares a favorite appetizer that takes only 10 minutes to prepare, Hot & Cheesy Taco Dip.

She Got Guts shares our favorite bath time toys & products for toddlers!

I wanted to share a Sensory 101; what is it, why is it important, how can we integrate sensory activities into play, , sensory processing disorder, how preemies are impacted, (my daughter was a micropreemie) and what to do if you have concerns. 

I am sharing the  basics of Fine Motor Skills; what they are, why they are important, developmental checklists by age, and what to do if you have concerns. 

We share the behavior techniques that work for our toddler and how our life is better since we stopped saying NO!

We spent a freezing and windy winter day in Cambridge with our toddler and had the best time so I thought I would share 5 Things to Do in Cambridge (with a toddler in the winter)!

Idea for a $5 Toddler Toy that can be used to work on cognitive and language skills.

I wanted to share a few things I have gotten lately for my house, a few things for Addie (including her entire Easter outfit for under $50), and share my addiction to Adeline's favorite color, "target red." 

A list of Candy Free Easter Basket Gift Ideas for Toddlers on Amazon that are fun, creative, and educational. Perfect for children ages 1-4.

I’m a mess.  A crying, blubbering, oversensitive mess.  I know this pales in comparison to what we’ve been through, but it feels like my heart is breaking.  I know it’s the right decision, I know I’ll get over it, but I’m mourning it all the same. 

Hey friends! I get so many questions about Adeline's feeding tube, so I thought I would compile them all into one place.  If something is not covered here, please reach out to me because I would love to hear from you.

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.

In honor of #FeedingTubeAwarenessWeek we have teamed up with some incredible small businesses to spread awareness and to give ONE LUCKY WINNER some free stuff inspired by Tubies! 

My kid loves trains. She’s fascinated with them. There’s a cargo line that runs past our house and the train comes through once or twice a day. It’s a ritual now that whenever we hear the whistle of the oncoming train, we run, frantically out onto the porch to wave to the train and watch it pass. Everyone knows it. When that whistle blows, even JPEG loses his mind, barking, and scrambling to the front door. Addie’s face lights up, one part joy, one part fear that she’ll miss it, one part complete shock. She stops what she’s doing, instantly, and sprints for the door.  So I decided this year to make her a train table!

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! 

It's hard to believe that we're wrapping up day 19 of this hospital stay. 3 weeks on Sunday. 128 days in the hospital since September 16th. And yesterday, Addie turned 6 months old. Out of the ~180 days she's been alive, most of it has been spent in the confines of a medical institution. Crazy when you think about it long enough. Last night, before bed, Steph and I flipped through, backwards, all of the photos we've posted to her Facebook page and to see how far she's come is really incredible. From the tiny, 1.5 lb, red-skinned human struggling to breathe in the isolette, to the 8 lb, fair-skinned, smiling little peanut. The transformation is something that you start forget. Our focus is always on the now because that's where we have to be. We have to live in the moment. We have to fight with the doctors for what we know is right. We have to give this little one constant attention. We have to be by her side without ceasing. We cry, we worry, we set our timers for the next regimen of meds. We wait for the next diagnosis, the next procedure, the next treatment. And that means that while we see her grow, we rarely have an opportunity to sit back and watch it.

Whelp...another year has gone by.  To be completely cliche, the days are long, but the years are short.  It's unbelievable to me that I have spent three New Years' with Addie Belle in my life.  I feel like any year can have it's ups and downs, but I think when you have a child with medical complexities you get a few extra challenges thrown your way.  It can feel unfair, isolating, sad, make you feel envious of those around you living "typical lives" and dealing with teething and tantrums, it can make you feel angry, and disconnected from the rest of what's occurring in the world, and in your friends' and family's lives.  Living life with a child with medical needs means I never really sleep and makes it feel like we never get a break. 

One of the things people ask me about most often is, How did you get Adeline to talk? or What toys do you like to get your toddler to talk?   At 14 months old, Addie was not talking, she was only babbling "mama" so we began our journey of speech therapy.   After 10 years as a special educator, and 2 years working with my own daughter with language delays, I wanted to share what I've learned along the way.  I've come up with a list of my favorite toys to get your toddler talking, explained how to play with it, and what skills you can work on while playing.