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.  

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.

The countdown to Christmas has begun, and I guess that means I need to start shopping!  When it comes the holidays, I’ve always been pretty traditional, and even more so now with Addie.  I want to recreate all the traditions I had with my family growing up, so she can have the same experiences I cherish so much.  Each year my parents would get us a book that was from them, and not from Santa.  The book was always a beautiful, hardcover classic.  Those were books we never donated or sold when it was time to purge old toys and books.  Most of those books (the ones that weren’t lost or ruined because children), I still have today. I came up with my list of favorites we have or a few I have on Addie's Christmas Wish List! 

About a year ago, Adeline began brand repping for her shop and it gives me the perfect excuse to keep the happy mail from her coming and help support a brand I love.  It doesn’t hurt that my husband loves her Team Spirit Miami Dolphin bows, since she gets the color just right.  It September, KRZA participated in my NICU Awareness project by participating in our giveaway and created a purple Bebe Bow set in honor of Preemie Babies in which she donated a portion of those proceeds towards Adeline’s NICU.  Because of this, she will always hold a special place in my heart.  

I wanted to show you guys where to shop over Thanksgiving Weekend AND give you discount codes so you could buy some stuff from these amazing small businesses. 

World Prematurity Day on November 17 raises awareness of this serious health crisis. Throughout this month we have tried to draw attention to this crisis, sharing our story, other family's stories,  information about preemie babies,  and we are so excited to be partnering up with Pampers who is giving back to this community and to March of Dimes with their Pampers #LittlestFighters Campaign.  You can help give back and raise $$$ for our Preemies!

I was officially a brand-new, single mother to a 36-week preemie. I was terrified, exhausted, overjoyed, sad, happy, confused and wondering how on earth I was ever going to make this work. I knew that I would be going through my pregnancy – and motherhood – alone, but the moment was finally here. Grace was here. And I was the only person she had. The next 10 days in the NICU with Grace were the longest days of my entire life. Despite how hard they were, though, I can promise you this: Being there as a single mom for Grace in the NICU made my love for her grow tenfold – and it was the most rewarding experience I’ve ever had.  

That beeping. I’d hear it all the time: sitting on the couch, in the car, just as I was falling asleep. I’d be finally feeling safe and I’d hear that “beep beep beeeeeep” of a monitor going off. We were home, we were so incredibly lucky that our baby was doing so well, and yet, I couldn’t shake the anxiety, the sadness and the guilt. And that damn beeping in my head was a constant reminder I wasn’t okay.

Having a baby with home oxygen support presented it's own unique set of challenges. I wanted nothing more than to move about freely with my baby in my arms without an oxygen cylinder on my back, but it gave me an opportunity to learn and to educate those around us about the realities, the joys, the hardships, and the celebrations of having a medically complex baby.