Top 10 Tips for Traveling with TPN

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. 

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10 Reasons Why We Love Gus Gear

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! 

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Diary of a NICU Dad - Day 128

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.

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Most Memorable Moments of 2017

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. 

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25 Toys to Get Your Toddler Talking

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.  

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