Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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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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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Reflux Chronicle: Losing Count

I have officially lost count of the number of days without vomit. We’ve definitely broken Charlotte’s world record. We’re not counting little bitty urps (wet burps, really).

Yesterday we did not use the feeding tube at all. If I remember correctly, we didn’t use it on Saturday either. And I cannot remember the last time we took the Zevex pump out of the cabinet.

Dare I say that the reflux is behind us?


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Eating, Singing, Growing: A Charlotte Chronicle

Eating: Charlotte is still drinking the same amount as last reported, anywhere form 75% to 100% of all of her Pediasure. She’s increased her solid intake significantly, taking as much as 4, even 6 ounces of solid food at a meal. Recently, she’s begun to ask for “chewy” food. She has begun to realize that her food is pureed and she wants to eat Mommy and Daddy’s food or the “chewy” version of her food. Today it was sphagettios, last week hot dogs. We are loving this development. It does, however, present a challenge: She chews very, very slowly and simply cant take in any volume this way so it is an inefficient way to assure her caloric needs are met.

She knows how proud we are when she eats. A few days ago she told me to take her picture because she was feeding herself (I’ll post video here tomorrow.)

An eating anecdote: Last week Charlotte and I didn’t feel well so we had a very slow morning, pajamas until 10:00 a.m., no breakfast, etc. At 10:30 we went to brunch around the corner. Charlotte, whom I’d had on a liquid diet for a few hours, was HUNGRY. She practically grabbed the yogurt out of my hand and had shoveled most of it into her mouth by the time I got my coffee. Then she continued to nibble at toast and drink her milk while I ate my breakfast. She chatted, flirted with the server and bus boy, and burst into song. She was an absolutely dreamy date.

It’s hard to remember where we were with feeding a year ago. Here’s a flashback link.

For the record, she’s vomited maybe 3 to 4 times in the past 23 days. Last week it was due to either a cold or tummy bug and was hours away from any meal (so it doesn’t count in my book!). Prior to that, she’d eaten so much (voluntarily) that I think she simply had too much in her tummy.

Singing: Charlotte loves to sing. She wakes up singing. She sings all day long. She knows the tunes to all her favorite songs and will sometimes make up the words. She has a little repertoire of songs for which she knows some words and that she asks for by name (Mamma Mia, Elmo’s ladybug song, Hippo Hippopotome).

This past week she started singing words to songs she’s only hummed before: Old McDonald, Au Clair de la Lune, and Momma Mia (“mommy mia, here I go again”). Simply too funny.

Growing: At last weight check (Her flu shot on 9/29. By the way, she’d want me to tell you that she didn’t cry for the flu shot. Her daddy says she did. You decide) Charlotte weighed 30 lbs. She’s either holding steady or fluctuating plus/minus 100mg. Dr. Salem, pediatrician extraordinaire, seems unconcerned. We’ll see in 3 weeks what the CHOW team thinks.

My giant baby is more than 37″ tall. And as she tells me daily, “‘Harlotte not a baby anymore. ‘Harlotte a big, big girl.”


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Gold Star For Charlotte

Do teachers still give gold stars for 100% scores? Well, Miss Charlotte earned a gold star today. She drank 100% of her Pediasure. No tube.

Other news–yesterday’s weigh in gave a weight of 13.7k (30.25 lbs). Per the pediatrician’s scale, that is a full half pound more than she weighed 2-3 weeks ago. We go back on 9/29 for a flu shot and weigh in. Stay tuned.
By the way, did you ever wonder what Charlotte is doing while Mommy is blogging? I snapped this about 10 minutes ago.

(Daddy, this one is for you; your last glance before bedtime.)


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Not Quite a Feeding Clinic Update

Hey, Mom, put down the camera and lemme at that pizza and those bananas. At Wolfgang Puck’s in the AA terminal at O’Hare. Charlotte ate nearly all of a container of Gerber Organic Bananas and had (and chewed) about 5 bites of my pizza.

We had a flat tire in Racine and had to wait 45 minutes to help. The receptionist told us that the team wouldn’t be able to squeeze us in late (understandably) so, once repaired, we turned around and went home.

I’m trying to reschedule, if nothing works out for this week, our next appointment on 7/12 (the whole family, including birthday boy Daddy).

In the meantime, since you’re all dying to know how she is eating: Charlotte is eating like crazy. She’s averaging 2 to 4 tablespoons of puree a meal and getting to 180-200 mls. of Pediasure fairly consistently throughout the day. Midge, the dietician/nutritionist at CHOW tells me that this is 1,200 or more calories a day (her recommended diet is aorund 900 calories a day) and that, based on her most recent food journal, she’s taking 90% of those calories orally.

Charlotte and Nemo, the flying fish, get a tour of the cockpit from Christine, our fab flight attendant, after landing in Newark 2 weekends ago.

She’s starting to really open her mouth. I bought some The First Years Take & Toss spoons when we were out of town and they seem to do the trick.

But…she’s vomiting almost daily again. Frequently it’s fairly large (4-6 ounces). Yesterday morning with Laura she ate 2 tbls. of egg puree, 2 tbls. of applesauce, and 200 mls. of Pediasure. about 5 minutes after she finished, she vomited all of it back up. Maybe even more than all of it.

We’re working (via email) with Midge and Trina (our RN at CHOW) to make sure that Charlotte’s meds are the correct dosage for her weight and then to reduce her caloric intake in case she’s vomiting because she’s getting too much. Yep, you read that correctly! After 2 years of worrying that Charlotte was not getting enough nutrition, we’re finally concerned that she might be getting too much. Hurray!


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Foot Fetish–A Feeding Update

Play piano! Yeah!

Recently on P2P, the wonderful support website for parents of tube-fed kids, a mom asked if anyone else’s kids liked pulling off their socks. Charlotte goes beyond that. She loves to pull of her socks, yes. But she thinks having her feet tickled and “nibbled” is about the best thing ever. We have a blast singing “Boogie-Woogie Piggies.”

So, you ask, how is this crazy blogging mama going to segue from feet to food? (Well, my brother is now asking why I have to use big words like “segue” and I’m sticking my tongue out at him!)

Bummer! I’m wearing tights, so I can’t take my socks off.

Charlotte has been eating terrifically well, for her. She averages more than 600 mls. daily of her 900 mls. minimum. And she takes almost a tablespoon of solid food each meal. It’s not a lot for a regular toddler, but Charlotte is not yet regular in the food department.

Last night she drank her entire dinner, all 240 mls. (8 ounces for you non-metric folks). And, how did I get her to do that you ask? Well, that is where the feet come in. Seriously. She wanted me to tickle and nibble her toes. So, for each five sips she took, I let her pick a toe for nibbling. We did this for a total of 2 ounces. I am not sure how she managed to eat between all those giggles!
On top of that, she’s been taking all of her medicine by mouth all week. Last night when Philippe tried to put her meds in her tube, she said “mouth” and insisted on taking her medicine like big kids do. True story.

I never stop moving.

Why all this progress? I don’t know. But she has started asking to see my “tubey” and asking us to “take out tubey.” I’ve started explaining to her that in order to get rid of her tube for good she needs to eat. Our daily conversation goes like this:
C: “Tubey out” (a bit whiney)
Me: “What do we need to do to take the tubey out forever.”
C: “Eating”
Me: “Are you going to eat like a big girl.”
C: “NO!” Big smile and giggle, “Hungry.”
Me: “Let’s go get breakfast.
C: “Eating!”
Eating indeed!