A Word from Brielle's Mom

Brielle’s third visit back to Boston for medical care had a much more relaxed feel than the previous two years. I guess that is what happens when you are blessed with the privilege to have innovative airway surgeries completed by the country’s most passionate and skilled surgeons. The airway surgeries that Brielle received two years ago completely changed the course of her day-to-day medical needs and overall health. The ongoing medical management of her heart and esophageal defects are now better supported by her impeccable airway and lung health, both of which are a direct result of the anterior and posterior tracheopexy interventions she received at Boston Children’s in 2019. There is always some level of fear when your child goes into the operating room, but to have unwavering confidence in her overall pre-operative health paired with the skill set of familiar and talented surgeons allowed for a level of comfort that we have not had before. 

Over the last two years, since Brielle’s last blog story on Sharyn’s page, Brielle has made incredible gains in her social, emotional, cognitive, speech, and physical development. It has been so fun to watch her navigate her world while honing in on these skills.

Brielle is still very much a “watcher” in her own world, especially when in crowded places or not in a one-on-one environment. She learns so much because of this personality trait. Brielle loves music … LOVES music. One of the playlists she listens to from her Little Baby Bum artist turned the wise old owl quote into a song that she listens to often:

“A wise old owl lived in an oak;

The more he saw the less he spoke;

The less he spoke the more he heard:

Why can't we all be like that bird?” 

I don’t think Brielle understands how much this quote describes her.

One of the quality-of-life improvements that Brielle’s heart and airway surgeries gave her is her improved activity tolerance. Since her surgical repairs, Brielle has learned to confidently run, jump, climb, and balance. She still has a lot more tightness and reduced rotation than her age-matched peers, but she continues to make improvements by going to physical therapy, receiving regular chiropractic adjustments, and participating in hippotherapy (horse therapy) with a local STAT program. The work she has put in with her occupational therapist has allowed her to become more independent in so many ways including dressing herself, improving her grasp for playing with/manipulating toys and objects, developing her pre-writing strokes to prepare her for preschool and kindergarten, and reducing her aversions and/or anxieties to certain sensory inputs. 

Now that Brielle’s airway supports a more natural respiratory coordination, her speech has come a long way with the help of speech therapy. She is now putting two words together consistently, and up to 3-4-word phrases together with familiar vocabulary or daily routines. She still uses her sign language paired with her verbal speech if she wants to get her point across. For example, when she told Sharyn “all done”, she added in her sign for conviction. Brielle makes sure that she is understood when she has something important to say.

Due to her esophageal defects, Brielle still cannot eat by mouth. She is fed entirely by g-tube. She continues to receive a homemade blenderized diet with real food blended to a puree and syringed into the tube. She is lucky to have a Dad who is a chef and has a vast knowledge base on nutritional variety. She receives better nutrition than we do!  

Brielle has always been captivating, but more recently she has begun to engage with her world in ways that she never did before. The confidence that she has gained in herself, paired with not waking up every day just trying to survive, has brought out a more light-hearted side of Brielle. She doesn’t just make you smile and laugh; she now smiles and laughs with you. She doesn’t just return your greeting with a hello; she now will initiate a greeting by saying hello first if she is in a comfortable and familiar environment. She is patient, kind, and silly. She makes us proud every day.

Sharyn has hung out with Brielle for 3 afternoons in her lifetime. Three times for a couple of hours each visit. Yet, Sharyn understands Brielle just as well as some of our closest friends and family. To compliment her photos, when she writes about Brielle in her blog, the words she chooses to use are further proof that she just gets her. She has managed to capture the moments that mean so much to me as Brielle's Mom. The moments where Brielle doesn't hold back from expressing her most innate traits through a single look:

Fierce. Assertive. Fearless. Strong. Brave. Resilient. Captivating. Capable. 

When Sharyn sent me the sneak peeks the other day from this Boston shoot (taken the day before Brielle's procedures), the photo she chose to edit as one of the first made me grateful, once again, that we found her on a whim on our first trip to Boston three years ago...and even more so, I'm grateful that she chose us and said yes.