Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Goodbye 2015, Hello Leap Year

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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Charlotte’s New Year

Last year I wrote that our resolutions for Charlotte for 2009 were: To learn to eat happily and politely so that meals can stop being the most stressful times of our day. To learn to dress herself. (Yes, both of those are actually mom & dad’s wishes for her.) To learn to peddle her bicycle so that Mommy will put the bell back on. To go back to Virginia Beach and play in the sand. To visit Nenenne in Belgium. To go back to New York City. To turn four. And, as always, to continue to grow from strength to strength.

How’d she do? Well, mealtime is still pretty stressful, but getting (mostly) better all the time. She mostly dresses herself, but really slowly because she prefers “full service”parenting. She didn’t get back to NYC, but she did drive through it and refused to sleep. Doesn’t that count?

Bicycling is a story in itself. Here’s the short version: Charlotte fell twice in one day in April. For the rest of that week, she rode her bike. A week later she stopped riding. A few times she let me get her helmet on her and then got hysterical. After that she simply wouldn’t even consider it. This lasted nearly 5 months. Sometime in the fall she announced that she was ready to ride again. She went as far as the library and back that day, probably about a mile round trip. From that moment on, she was the riding queen.

In 2009 (in no particular order):

  • Charlotte was “promoted” to junior-kindergarten, or as we call it at the Lycée Français, la moyenne section. She loves her new teachers and the class bunny, Coton.
  • Charlotte finally got to Boston to meet her Aunt Bobbie (my father’s sister) and Uncle Melvin (my father’s uncle). Cousin Mark nailed a cold reading of Skippyjon Jones.

  • She made it to Belgium to see her Nenenne and aunts and uncle. As a bonus, she also made it Paris and met my friend Fabrice, his partner Sonia, and his daughter Eva. The trip was such a success that Eva came to Chicago to visit us in October.
  • She went to New Jersey multiple times–to see her cousins Taylor and Jamie graduate from high school, to celebrate Thanksgiving, and again in December for the annual Goldman Hanukah exchange.
  • Expanded her movie repertoire to include 101 Dalmatians (101 times!), Cinderella and Lady and the Tramp.
  • Taught herself to read. Really read. We’re at about 1st grade level, I think. She reads everything–books, street signs, sale signs, you name it.
  • Started to get interested in basic math.
  • Decided she likes to eat (or at least try) whatever we eat for dinner, including black bean cakes, cod seasoned with Emeril’s cajun seasoning, tortilla-crusted tilapia, salmon, steak, you name it. She doesn’t always like it, but she nearly always tries it.
  • Started swimming lessons, progressed very little, and went on swimming strike.
  • Learned to write the alphabet
  • Had tubes put in both ears, ending the chronic ear infections
  • Hade her release appointment with Children’s Hospital of Wisconsin Feeding Team
  • Was assessed by a development therapist and an occupational therapist to address some school conerns (*more on this later)
  • Grew another 2 inches, reaching the height of 43″ or so, a virtual giant, and gained 5 lbs. for a total of 40 lbs.
  • Discovered board games and mastered a 100 piece puzzle
  • Lost Bubba and, more importantly, dealt with the loss with uncommon maturity
  • She still loves Bubba, ignoring the fact that he’s a “replacement;: plays the piano and sings, still making up her own melodies and words as she goes; plays dress up every time she can

Like last year, Charlotte and we would like to honor the extended Team Charlotte who helped us reach this day with grace and some bit of sanity:

  • Dr. Carl Backker, cardiac-thoracic surgeon. We haven’t needed to visit him this year, but he’s always going to be on the top of the list
  • Dr. Luciana Young, cardiologist extraordinaire
  • Dr. Kathleen Billings, ENT
  • The Feeding Team at Children’s Hospital of Wisconsin
  • All of our wonderful friends who never think of Charlotte as anything other than a regular kid
  • Lakeview Pediatrics, all the doctors and staff, who answer our questions and assure us that Charlotte is as extraordinary as we think she is
  • Janet Holzman , of Kids’ Kastle and her assistant Ramie, the very next best thing to caring for Charlotte myself
  • Lycée Français, Charlotte’s teachers and friends
  • Our families, especially our nieces who treat Charlotte like one of the girls, even if she is 10 years younger than they are
  • Dr. Charlie, Charlotte’s dentist

If I’ve left anyone out, please know that we are ever-grateful for all of your kind thoughts, your emails, your comments on the blog. We never take for granted the blessings we find in the love and support of our family and friends. And we are always moved when strangers find the site and post their well-wishes.