Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Charlotte in Belgium

Charlotte had a grand time in Belgium visiting Nenenne (Philippe’s mother), Tante Mich, and Philippe’s aunts and uncles, and our friends.
How were the flights?

She barely slept on either flight. Daddy helped her get some rest

She read Olivia Counts over and over on the way there and Iggy Peck about 7 times on the flight home. She recited Olivia and the Missing Toy and Iggy Peck spontaneously several times each day.


She sang Mamma Mia on request at each visit. Imagine her delight when Philippe’s friends joined her in duets!

What were Charlotte’s favorite moments?

Her first piano lesson, given by the maestro Tonton Ric.

Snuggling with Nenenne. She’s already asked several times since we got back if we’re going to see Nenenne in the morning.

How did she eat? Beautifully. We crossed our fingers and crossed the Atlantic without the Zevex pump (because we don’t remember the last time we used it). We syringed no more than 90 mls. per day. She sampled olives and pate, chowed on french fries and potato chips, and discovered curried chicken.

The funniest moment? Charlotte grabbed a handful of french fries from my bowl at lunch one day. She then dunked a fry into her bowl of chocolate pudding, stared at it seriously for a moment, shoved it into her mouth, declared “yummmm,” and chewed it right up! Not only did we hold our breath as she contemplated her culinary concoction, but at least one other family in the restaurant watched and giggled.

She’s transitioned back to Chicago time beautifully, perhaps because she never really transitioned to Belgian time. And, according to Jenna, she’s spontaneously speaking French, answering “oui” to a question yesterday.

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Feeding Clinic Visit: Drug-induced Munchies (legal, of course)

Philippe and I took Charlotte to Children’s Hospital of Wisconsin on Thursday for a meeting with the Feeding Team and for Charlotte’s PIE (patient in-patient evaluation) in preparation for our January or February in-patient stay.

Weight: 13.6k (30.6 lbs).
Height: 3 feet 2 inches tall!

A year and a half ago Charlotte was barely on the growth chart. Now she registers 95th percentile for height (97th if we were to adjust for gestational age).

The nutritionist, psychologist, and SLT were happy with Charlotte’s progress. According to the food journal that I did last week, she is taking 90% of her calories by mouth. They still thought that an in-patient stay would benefit Charlotte and help us get her off of the g-tube completely. We asked a lot of questions, the most important of which (for me) was “Do we really want to put a healthy heart patient in the hospital during the height of cold & flu season?” I didn’t really get a response to that and we moved on to other things.

Next we saw the GI doc. She started our visit by looking at Charlotte’s chart and saying, “She’s 90% there and we’re talking about a January admit. Are you sure you want to put a healthy heart kid in the hospital when the sickest kids in Southern Wisconsin will be here?”

Finally, I thought, someone who hears and understands my concerns!

Dr. B. went on to say that she would like to try switching Charlotte’s antihistamine (currently Zyrtec) to something that will give her the munchies (I can’t pronounce or remember it). She thinks that this new medication will help Charlotte wean herself off of the g-tube. Dr. B. is going to consult with our pediatrician (since she prescribed the Zyrtec) to get the Rx changed.

So, we’re waiting for the munchie-inducing prescription and NOT checking into the hospital in January.

Despite my clinical report, I’m jumping for joy!


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Charlotte Reads: Announcing a New Blog Feature

Charlotte’s medical updates are fewer and further (farther?) between, so I’ve decided to add a regular feature to the blog: Charlotte Reads. I’ve thought about making a separate blog, but Philippe suggested I keep it here.

Charlotte Reads will be just that–Charlotte reading her favorite books with me, her dad, Karley, or whoever is there when I turn the videocamera or Zoom H2 on. The mission: To share the books that Charlotte is enjoying (hmm…obsessing over?) at the moment. It grows out of my not wanting to compete with the fabulous kidslit bloggers out there and not wanting to write more book reviews and not wanting to have a kidslit blog of my own. Charlotte’s interaction with the book will serve as its own sort of “review.”
And in most cases she will not be reading The Cinema of Latin America, although it is one of her current faves.


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Reflux Chronicle: Hot Chocolate

This is the post I never ever thought I’d be able to write. It’s bringing tears to my eyes as I type.

Today, Charlotte and I rode our bike to the playground (I pedalled, she tickled my tush). As we began our ride home the sun was setting, the temperature was dropping, and the wind picked up. It must’ve dropped 10 degrees in 10 minutes. Charlotte didn’t notice until the last 5 minutes. Mommy Reynaud’s, however, was literally going numb. I took me several minutes to undo the velcro straps on Charlotte’s feet when we got home because my fingers weren’t working.

So, I put on the kettle and set about making hot chocolate. Charlotte squealed with delight, “Harlotte have some!!” Not a request, not a command, simply a gleeful shout.

I poured an ounce of hot chocolate into a cup, swirled an ice cube in it, and handed it to Charlotte. She sucked it down faster than you can say “Skippy Jon Jones, Skippy Jon Jones, Skippy Jon Jones,” handed the cup to me, and declared, “‘Harlotte all done.”

It wasn’t mealtime. She wasn’t in her chair. I didn’t ask her to eat.

She just jumped at the chance. I’m so proud that it was for hot chocolate!!


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Children’s Memorial Hospital: New Doc On Staff?


I am sad to report that I missed the first Halloween that meant anything to Charlotte. I was busy teaching (and I let one of my students leave early so she could take her kids trick or treating because I was sad to miss Charlotte’s first outing).

But, as you can see, Charlotte had a blast with her gal pal Karley. Here’s what Karley had to say about Halloween with Charlotte:

We went trick-or-treating across the street, she loved it! She got a lolly pop
from someone that she wouldn’t let out of her site once we got home.

I heard from Karley and Philippe that Charlotte was so excited for trick-or-treaters, too. She gave them candy and when they left, asked to see more. In fact, yesterday morning she was still looking for trick-or-treaters.
Charlotte’s costume was a gift from our friends at the Children’s Memorial Foundation. She’s not just a doctor, she’s a bubba doctor. She has already declared that she’ll be a bubba doctor again next year.

All photographs (c) Karley Beery, October 2007