Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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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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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18 or Why I Haven’t Blogged about Eating in a While

Eighteen is a wonderful number in the Jewish tradition. The Hebrew letters, het and yod, that make up the number 18 also spell the word “living.” For that, and a variety of other reasons, the number 18 is a lucky number. Jews frequently wear its symbol around their neck, we say “L’chaim” (“To Life”) when we toast one another, and we give multiples of 18 when we make philanthropic donations.

At our house today, 18 is a particularly wonderful number. Charlotte has not vomited in 18 days. This is the longest period of time without a vomit since our 15 day streak in January. And it follows a very long, terrible period of daily humongous vomits.

So, how is eating going? Check it out.

Charlotte is drinking +90% of what we ask her to drink (600 mls of Pediasure) daily. She’s taking an average of 440 calories in solid food (puree mostly) each day. She runs to the table for meals instead of away from the table. She feeds herself. Well, sometimes. She’s excited to try new foods and to eat fresh fruits. This week she tried (and LOVED) brussel sprouts (pureed with lots of butter and chicken broth, of course). She also loves it when we all eat together and she has the same food as mommy and daddy, even if hers is the mushy version.

I won’t know about her weight gain until tomorrow, but I’m optimistic.

Best of all, meals have been fun for all of us.


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One Day Later

“Harlotte wearing Mommy’s sunglasses” (That’s what she calls herself. That or “you.”)

Okay. I know I can’t declare success after just one day. And I certainly can’t declare success when Charlotte drank only about 65% of her Pediasure today.

But, hell, SUCCESS!!!!!!!!!! At dinner tonight Charlotte (1) willingly went to the table (2) ate four ounces of (pureed) refried beans by herself. She took the spoon from me and insisted on feeding herself. And…(3) on the way home from a playdate this afternoon she ate thirty or so Cheerios and three Teddy Grahams. She asked for them.

Yeah, she vomited after/during lunch. She was really congested. But, really, today was a sea-change.


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Reaching Astonishing Heights A Feeding Clinic Update

Charlotte and I made the trek to Milwaukee in time for a 10:00 a.m. appointment this morning. Despite the fact that I thought I would nod off in the car, we made it on time and in one piece.

Of course, the team was running a bit late. But, as they always tell me, their schedule is a “best guess” as they deal with in-patient and out-patient kids.

Get to the astonishing height, already,” you’re thinking, tapping your foot. Here it is, Charlotte measured 37 inches. Yes, 3 feet 1 inch. She had lost about 100 grams, but given her growth no one was worried about it.

The concerns we took to them:
–Mealtimes have turned into mini-battles again. She screams “no eating” and runs from the table when we tell her it is mealtime.

–Her Pediasure consumption seems to have decreased back to 65-75%. (I say “seems” because I haven’t put the amounts into my spreadsheet in a while.)

–We’re seeing at least one large vomit daily.

–Feeding Charlotte four times a day is beginning to take its toll on me. I end up in tears several times a week or I yell at Charlotte. None of this, of course, is good for Charlotte.

The team’s response and strategy:

–We’re reducing Charlotte’s Pediasure intake from 800 mls. to 600 mls. per day. This will allow me to feed her only three times a day. Woo hoo!

–We need to assure that she gets an additional ten to twelve ounces of liquid daily to keep her hydrated.

–We need to get four hundred to five hundred calories of solid food in her each day.

As I have mentioned before, there is still the possibility of Charlotte and I going in-patient for what I call “feeding boot camp.” (I’m sure the Feeding Team calls it something much nicer and more clinical.) She’s been on the wait list for about six months. We’re planning now for a January or February admit depending on the progress Charlotte makes between now and then and, of course, on whether our insurance approves this plan.

In-patient So, I’m imagining a hospital-studio apartment, something a little cozy, with a one-way mirror (for me to watch the clinicians feed her and vice versa). I’m thinking a carpeted floor, playroom, etc.

Here’s the reality: A large, private hospital room with one bed. Mom or Dad get to sleep on the pullout chair (so good for my dysfunctional SI joint and insomnia). I can watch television in the room while she sleeps (yeah, right). There is wifi and a parent resource room. There is Child Life which may have a playgroup. We’re confined to the hospital for two weeks.

If we need to go, we’ll go. Philippe will come up for weekend(s) and, hopefully, we’ll get a room at the Ronald McDonald house so we can alternate who sleeps in hospital. (Or, we’ll get a hotel room.) I teach on Thursdays in the spring, so Philippe would come up on Wednesday and switch with me to the night. I’ll watch DVDs on my laptop and read the three Harry Potter books I haven’t read yet. And maybe War and Peace. Or maybe I’ll get some manuscripts ready for submission. I’ll blog. A LOT.

We’ll work it out. We always do.

Stay tuned. Maybe it will all be a moot point.