Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Charlotte Reads: Bouncing, Dancing, Galloping ABC

Click on the title of this post to hear Charlotte reading one of our favorite ABC books.

We originally picked up The Bouncing Dancing Galloping ABC at the library for one reason–the author’s name is Charlotte Doyle. For a long time, Charlotte referred to it as the Charlotte book.

Now she knows it by heart. Occasionally during the day she’ll refer to it by acting it out. For instance: Charlotte will spin, get dizzy, and fall down, declaring, “Charlotte dropped herself.” Why? Because “D is for dancing and dizzy and drop,” of course.

I like this book for its original take on the alphabet. This alphabet is packed with action, with all the letters illustrated by verbs. The rhyme is light-handed, but catchy enough to remember. We can recite this alphabet all day long. (And, yeah, we do!). Julia Gorton’s illustrations are colorful, playful, and simply full.

This book truly celebrates the alphabet. What a great way to start reading!


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Reflux Chronicle: Passing the First Hurdle

Look at me! I can walk in Mommy’s boots! (Picture by Karley B.)

We are nearing the one-month mark of our g-tube free trial. For the first 20+ days, Charlotte met all of her benchmarks, consistently averaging enough calories (combined fluid and solids) not need the tube.

Additionally, she has begun to run to the table at mealtime, ask if she can carry things to the table, and feed herself the first several bites if she’s really hungry. Part of this behavior is evolutionary (it was beginning at the end of last year).

Partly, I attribute it to another milestone in Charlotte’s life: she started daycare on January 7. Two days a week, while I teach, she is the warm, loving environment of a home daycare provider in my neighborhood. Janet and Ramie, her assistant, take care of 7 to 10 children (depends on the day), all under 3 years old. Most of the children seem to be within 6 months of Charlotte. So, she has some peer behavior modeling, different adults working with her, and a real sense of achievement. We LOVE daycare! (More on that in a few days.)

The first hurdle: As we got to week three of our tube-free trial, Charlotte came down with a cold which then turned into a cough. Her pediatrician diagnosed her with a-typical pneumonia and put her on z-pac antibiotics. Not surprisingly, Charlotte was pretty disinterested in food for about a week. Even the usual lure of chicken soup “with letters in it” didn’t perk her up. We didn’t force it, let her eat what she would, and tried to pack high calories into her low volume.

This is the test–can she bounce back after an illness, eating enough food and ending the two months with the appropriate weight gain. (In other words, if she loses weight during an illness, does she gain it back as effectively as “regular” kids?)

Within 3 days of antibiotics she was eating eagerly again, though her liquid volume is still down a bit.

And, according to our bathroom scale, she didn’t lose an ounce! We have an “official” weight check with the pediatricianon 2/12.


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Reflux Chronicle: Trialing No G-tube

Charlotte will tell you that the most memorable part of her visit to the CHOW feeding clinic was that “Dr. Julie changed ‘Harlotte’s tubey.” That’s true. Our RN, Julie, did change Charlotte’s MICKely button since it hadn’t been changed since April.

And for Charlotte, that probably was the highlight. She cried a little, but was mostly very brave.
But what does a 2-year-old really know?

The real excitement of our visit was this: We were given the green light to go for two months with no g-tube usage. In other words, what Charlotte drinks, she drinks. If she doesn’t make a full 200 mls. at a meal, we don’t “top her off” with the tummy tube.

Given that prior to our visit Charlotte had gone for as many as 9 days without needing the tube, I went to Milwaukee ready to lobby for a trial. When the team offered it to me before I could suggest it, I was over the moon.

We’re also supposed to start offering mashed foods in addition to pureed to begin to transition her to eating regular solid food.

So, how is she doing? Since Friday she has drunk all of her “required” milk (600 mls.) and on at least one day she has drunk even more. Yesterday she got to 640 mls. She’s eating just beautifully, though I think she’s bored with her puree repertoire. Mashed foods are more of a challenge, though, because she loses focus quickly.
Sometimes it is hard to remember how far we’ve come. Here’s what I wrote on January 8, 2006:

Charlotte continues, seemingly, to lose ground on the eating front. She took only 1-2 ounces from each of 3 6-ounce bottles today. Just a few weeks ago she was finishing at least one bottle a day and taking 4 to 5 ounces from the others. Since yesterday she’s been refusing or gagging on her solid food, too.

I feared that she would be come 100% tube-dependent.

Two years later, I’m sincerely hopeful that we’ll be celebrating her birthday with a bandaid on the soon-to-be former stoma of her g-tube. Of course, I know she can go backwards as quickly as she has jumped ahead, but my fingers (and toes and ears) are crossed that she’ll be bikini-ready by summertime!
p.s. The other terrific highlight about our trip was that we had lunch with a friend of mine from my Discover Card days who is now working at Harley Davidson. Col, it was so great to see you!


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Happy New Year!

Last January I wrote that Charlotte’s resolutions for 2007 were: “Simply to fly through her next surgery with the same panache and resilience she brings to everything else. To turn two. To learn to say her name. To play in the ocean. And to continue to grow from strength to strength.”

To say she accomplished all she set out to do would hardly do justice to our year. And, since she still can’t (won’t?) say her name, it wouldn’t be entirely true. So I’ll start with a picture from last January.
Here she is last month.

In 2007:

  • Charlotte had her second open heart surgery. She was home from the hospital in 5 days. Her scar is barely visible.
  • She reached the amazing height of 38.75 inches (4 inches since last January)
  • She weights 31.2 lbs. (Just about 6 lbs. since last January or .5 lbs per month, exactly what the doctors expect from her.)
  • Her speech and vocabulary improve and grow at such a rate that we laugh about our worries (in Fall 2006) that she had a slight speech delay.
  • We no longer count days without vomit. Vomiting is a rarity, not a regularity.
  • Charlotte is taking nearly 100% of her Pediasure by mouth. Last January I was giddy about 50%. She also eats between 400 to 600 calories of solid food daily.
  • She sings in French. Gorgeously.
  • She still loves Bubba, loves to push me around the house and place me where she wants me, and sings, making up her own melodies and words as she goes.
  • She has taught herself the alphabet and is now figuring out basic reading skills.
    She recognizes all her numbers.
  • She loves books (but you knew that).
As for the food front, stay tuned for another blog entry shortly.
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. His smile after Charlotte’s surgery said it all.
  • Laura Robson, Sara Karp and Cheryl Mercado–respectively Charlotte’s speech, physical and occupational therapists
  • Dr. Luciana Young, cardiologist extraordinaire
  • 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
  • Our families, especially our nieces who treat Charlotte like one of the girls, even if she is 10 years younger than they are
  • Tammy, pediatric optician, who makes sure that Charlotte has the perfect glasses, in terms of fit, function, and fashion
  • Dr. Charlie, Charlotte’s dentist
  • Francie Paul, a fellow “heart mom,” the founder of the Saving Tiny Hearts Society, and the best friend I’ve never met
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.

In summing up 2006, I wrote,

It was a rough year. In many ways, it was harder and longer than 2005. Charlotte
lost her only grandfather before he had a chance to know her or she him. There
were definitely days when I didn’t know how I’d make it until Charlotte’s
bedtime and nights when I thought that if I had to clean up one more vomit, I’d
lose my mind.

I can honestly say that 2007 flew by. Charlotte brings a smile to my face on even the most trying days. And most of the time, she is not the reason the day was difficult. We still miss our dads, but are glad that Charlotte spent time with both of her grandmothers this year. (Just this morning she said randomly, “Charlotte has two grandmas, Nenenne and Bamma.”) 2007 was truly a year of triumphs.

As for me, I never did manage arm balances and am still looking for balance in my life. I did, however, easily and successfully reenter a career I left nearly a decade ago. I’m teaching again. I have a book chapter coming out this year and a conference paper to deliver in March. I’ve been asked to help select films for the Chicago Latino Film Festival. And I’m one-third finished with my copy editing certificate. It’s been a full year. For 2008, I’m going to continue working on balance. Maybe the arm balances will follow.

Charlotte’s resolutions for 2008, you ask? To get rid of the g-tube. To transition nicely to daycare and then, in the fall, to preschool. To get potty trained (Okay, that’s mine, not hers. She could care less!). To learn to count. To learn to pronounce her name properly. To turn three. To play in the ocean, again. And, as always, to continue to grow from strength to strength.