Charlotte's Journey Home

Just a Regular Kid, Sort Of

Goodbye 2015, Hello Leap Year

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I realized tonight that we never did our annual New Year’s post for 2015. Probably because we were in the thick of “countdown to surgery.”

So, let me be the first in my family to wish you a happy and healthy 2016. We will not be sad to put parts of 2015 behind us. But, in truth, we couldn’t have asked for a better year. Yes, Charlotte had her third open-heart surgery. And, yes, it was the first surgery she was old enough to be scared of and the first new scar she was aware enough to be self-conscious about. And yet…she crushed it, as they say. She came through with a smile (after the dilaudid wore off).

And once past it, Charlotte learned to ride a bike; traveled to Washington, D.C., Mexico, Cape Cod, Belgium, Amsterdam, New York and New Jersey; had her first sleepover party; and made me laugh harder than you can imagine. We’re proud of the incredible strength she showed during the first part of the year and hope she’ll realize one day what a warrior she is.

As a Truncus Arteriosus type I patient, we have learned, Charlotte continues to experience best-case scenario outcomes. She has had no emergent issues and suffers no contingent developmental delays (we just learned this year that we probably should have been prepared for severe learning and developmental difficulties). With that in mind, I have one thing to say as 2015 fades into memory: Thank you.

Thank you Dr. Backer and your extraordinary surgical team. Charlotte with Dr. Backer Thank you Dr. Luciana Young, for your friendship and amazing care of our daughter. Thank you Elizabeth Capella, for teaching Charlotte’s friends about her condition to make post-surgery school easier.
C and Doc YoungC and Liz

 

 

 

 

 

 

 

 

Thank you to Lurie Children’s Hospital and the Regenstein Cardiac Care Unit.Flock of DocsThank you to Charlotte’s incomparable teacher Alexandra Mignet and her 4th grade class for throwing Charlotte a party and Skyping with her while she was out. DSCN1235Thank you to Philippe and Team Charlotte for running the Move for the Kids 5K with Charlotte in celebration of Charlotte’s recovery and in support of “Charlotte’s Hospital.”

Team Charlote MFTK

And thank you to each and every one of you who never ever treat her like anything other than a regular kid. All things considered, 2015 was a good year.

Charlotte’s Journey Home began as a way to keep our family and friends informed throughout my pregnancy and in the first critical weeks and months of Charlotte’s life. Little did I dream that it would be a 10+ year endeavor. Nor did we realize that we would touch the lives of other parents of CHD children or of kids with severe reflux. Or find an adult role model for Charlotte, another Truncus Arteriosus patient (Jessica, that’s you). Or be befriended by a tour-de-force crusader for CHD research (Francie, you know who you are). It’s been a pretty good 10 year run.

As we head into the next phase of Charlotte’s life, she wants more privacy about her growth and life changes. And as there aren’t that many medical updates these days, it seems a good time to put Charlotte’s Journey Home on hiatus. We’ll be back when there’s a heart or medical update of import, or when we want your support for our endeavors on behalf of Lurie Children’s, or when we just are so proud we need to kvell loudly.

Until then, dear reader and Team Charlotte, one last THANK YOU for all the support you’ve offered our family for the past decade.

Three in Mexico

 

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Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

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