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.  Last night the ball dropped, John and I kissed, and within 3 minutes he was in her room checking on an alarming pump.  Medical needs don't care if its the holiday.  If you've been following along, you know this last few weeks have been especially hectic. And the last 10 days have been particularly non-stop, leading to serious sleep deprivation. 

But yesterday, I finally slept.  I woke up feeling like I was on crack, so much energy and thoughts racing.  I needed to do something about my negative outlook, to turn my frown upside down.  I needed to think of our year in positives, what's good in our family's life.  Others (Isabelle, author of Isabelle's Fight) ,going through much worse, inspired me to let the light outshine the darkness, choose joy over woes, and to find peace, love, and gratitude amidst the trials.  Enduring this kind of turmoil is sometimes the gateway to our family's most treasured moments.  Here are a few of the best of 2017...

 


Addie learned to walk

At about 18 months old, after 8 months of physical therapy six times a month, countless hours of working on her skills at home, AFOs, a walker, blood, sweat, and tears, Adeline learned to walk.  It was such a huge milestone for our family and gave her freedom.  She never liked crawling and wanted so bad to get around on her own.  


We took our first Vacation

The crew

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At some point I decided that we were going to do something like a regular family and we are going on vacation.  Addie was 1.5 years old and at this point had spent more of her life in the hospital than at home, and most of the time she spent at home was strictly isolated.  My cousin Lauren and I decided we were going to celebrate isolation being over by going to her her in-law's island, Puerto Rico.  Together with another family, we spent a week in Puerto Rico against our doctors' wishes.  Their reasoning was not because of Adeline's medical stability, but rather because they never had a child on TPN travel outside the continental US.  I decided we'd be the first family to do it, and open the door for other families to do the same. After months of planning,  it was a week of just feeling regular and just what our souls needed.  Seeing her letting the waves knock her over and just keep getting up again and again with pure joy is something I'll never forget.  To hear more about our trip you can listen to our podcast on The Baby Nation


 

We Started this Blog

blog is launched - shegotguts.com

This was such a memorable moment for me personally to launch this blog.  Last spring I decided I want to start a blog and share what I have learned and tips and tricks for raising a kid with medical needs and developmentally delays.  One thing I loved when I was a Director of Education at a school for kids with autism, was helping parents or teachers.  I big part of my job was professional development of teachers, or going into various schools and observing and then making suggestions as to better help a particular student who was struggling academically or even behaviorally.  It was my passion, I loved my job.  I left my job when Adeline came home from the NICU but I found myself doing the same in the beautiful Instagram community we have created.  I would answer questions from families, answer several DMs a day, doing my passion in the same way I did before, but on a different platform.  This blog is a progression from the Instagram feed that has grown to thousands of followers and that has connected us to many other families experiencing something similar.  In 4 months since I launched the blog, I have had over 21 thousand people visit, and this blows me away and humbles me.  I still cannot believe that anyone cares about what I think or say, but this has rejuvenated me as an individual.  It makes me feel like I have another purpose, besides being a medical mama.  Thank you. 


summered at the jersey shore

We are so lucky my parents have a place down the shore.  We spend many weekends there over the summer and it is our home away from home.  My parents have made a room for us, created a space for all her medical supplies, so it makes it much easier traveling back and forth.  The shore seriously heals our soul.  Before Addie was born John and I used to say we felt like we would fall in love more again and again each summer.  There is something so peaceful about being near the water, spending time on the beach, disconnecting a bit (no Wifi and basic cable), and spending time with our family we do not get to see that often the rest of the year.  Adeline gets quality time with her grandparents, we can sneak out for some dates here and there, we have lazy mornings, spend time at the zoo, watch the sunset, and just be.  Its my therapy. 


She killed it at therapy

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Man my baby girl killed it this year at all her early interventions and therapies.  One of the biggest milestones is that she scored in the average range for her cognitive skills and language.  This was huge since only last year she had more than a 50% delay in both of those areas.  She had a language explosion, and has not stopped talking and in some areas she is above her current age level.  In speech, she went from 6 sessions a month 1 one and in OT she went from 6 sessions a month to 4.  Another huge accomplishment for her has been her eating.  She has continued to make slow and steady progress and lately she has been requesting food on her own.  This morning, she ate nearly half of an egg!!  She learned to walk, and has had two reductions in her AFO's, and spends most of her days now not wearing them.  In terms of her attention and behavior, she is able to attend to an adult led task for 15 minutes in her high chair, something she could not do for longer than a minute a year ago.  We worked on this several times a day.  I am so proud of my girl!! Most of the time she does not even realize what skills I am addressing with her.  The walk through the river in the photo above has her working on stability, core strength, walking on uneven surfaces, the list goes on and on! 


We transferred her medical treatment to boston

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After nearly 6 months of no growth, coming to a head with her current team, we traveled to Boston to seek a second opinion. This was huge for our family because for a long time we did not feel like we were on the same page as her medical providers, which is tough.  At the worst times, I felt like they did not believe me, or felt like I was holding her back.  We found a team that validated our concerns, that had the desire to want to figure Adeline out, and to make sure during this process she would begin to grow.  Since we transferred her care, she has gained over 2lbs, made huge gains with her cognitive development, fixed her line that was coiled, put into place several more interventions to decrease chance of infection and chance of line tear and have become better medical advocates for our daughter.  You can read more about our trip and our decision to transfer Addie's GI care. 


She was home for the holidays

For the first time in 3 years, we were home for the holidays.  In the first time in 3 years, she was not in the hospital or isolated for Halloween, Thanksgiving, and Christmas.  I am not saying she was of perfect health for all of the occasions, but she was home and able to be with family.  She went trick or treating, made her first jackolantern, went to Thanksgiving dinner, and attended our huge family Christmas Eve dinner.  We were so grateful for these moments, even if we had a few hospital visits and she was sick over Christmas, we were able to manage from home. 


She survived

She survived.   She survived 3 line infections, one with sepsis.  She survived 3 surgeries, and going under anesthesia about 8 times. She survived hypoglycemia, feeding intolerance, blood clots, dehydration, neurological event, neutropenia, vomiting, retching, SBS rashes,  poop problems, coiled broviac, RSV, and intussusception.  She survived countless doctors appointments, tests, weekly blood draws, and countless hospitalizations or ER visits.  She survived. This 20 lb toddler survived with resilience and strength of a tiny human with a heart of gold, the drive of an Olympian, and the fight of an army of Dothraki  

A few more of my favorites...

She tasted more foods

"Oh!" (So proud of her willingness to "taste" different foods)

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the cutest voice was heard

she never gave up

 

She learned to sing

she used sign language to communicate

she gave us so much light

My husband is going to kill me for posting this but I couldn't help myself

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she reminded us to love harder

found joy in the little things

A present from Nonna and PopPop 🎁

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bring it 2018!!