Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Fettucine Alfredo

At the suggestion of dietician extraordinaire Sara from CHOW I introduced Charlotte to fettucini alfredo this week. Charlotte would subsis on Spaghettios and Amy’s Ravioli if I’d let her, so we’re trying to broaden her horizons.

What she lacks in quantitiy eaten she makes up for with exuberance! (She’s eating up to about 2 tablespoons, but she earns dessert by eating nicely, so we get the calories in….)
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Feeding Clinic Visit

Charlotte with her favorite monster last Sunday. She’s still talking about her celebrity encounter!

Charlotte and I visited Sara, her dietician, at Children’s Hospital of Wisconsin today. Charlotte’s “official” CHOW weight was 15.3 k, or precisely what it was back in June. While her vertical growth (she’s up to 3 feet 5.75 inches) is steady, Sara is a tad concerned that her weight gain is flat. Charlotte has gone from 94% ideal weight for height to 90% ideal weight for height.

Charlotte did have 3 ear infections in about 6 weeks (August through September), followed by a 24-hour “summer fever,” all of which dampened her appetite in the past two months.

I’m hoping that now that she’s healthy (save for a sniffly nose), she’ll start chowing down again. But, we’re back to needing to be vigilant about caloric intake, adding calories where we can, and worrying about food and weight.

On the bright side:

  • We don’t have to worry about reflux. Even with her last ear infection and her current runny nose, we’ve not seen any gagging or vomiting.
  • She is in the 97th percentile for height for her age (not quite 3 1/2). To put it another way, she’s average for a 4 year old (and in our experience, she’s as tall or taller than most 4 year olds we know!).
  • Sara loved the broad range of foods Charlotte will try or will eat.


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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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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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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.


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Feeding Clinic Update

Charlotte and I trekked to Milwaukee yesterday for our twice-monthly updates. Charlotte was excited about the trip and talked and sang the entire way. Bleary-eyed mom was glad of the company to keep my awake!

We visited with Dr. Long and Amy. This time, they went behind the one-way mirror and watched me feed Charlotte. I had thingy in my ear through which Dr. Long could give me direction. Charlotte was eating with gusto at first. Can you blame her? She’d had breakfast at 7 a.m. and it was 1 p.m. Also, she liked the new flavor–sloppy joe (think pureed Manwich). But, it was naptime and she was tired and eating is stressful. So, reflux turned into a massive, I mean massive, vomit, ending with bubbles of bile.

Dr. Long is whispering in my ear to clean her up, reassure her but not say “poor baby,” and keep feeding. Charlotte is in my face crying hysterically. Charlotte never cries, by the way, and she’s only hysterical when she’s funny. I had not slept in 2 nights. So….I finally said back to Dr. Long, “I can’t do this.” And she came in to feed Charlotte.

We talked about next steps. Basically, more of the same: limit meals to twenty minutes; offer 2 high-calorie purees; alternate five bites of food and five sips of milk; and, my favorite, try not to let her see my frustration. Hah.

We also talked about the possibility of consulting via webcam in a Telemed pilot they’re running. This would have allowed for weekly “home visits” because they understand that she behaves differently up there. Unfortunately, since we’re in Chicago we’re not eligible (they can’t practice over state lines, even electronically because they are only licensed in Wisconsin).

For now, we’re going back to monthly visits with nutrition consults in between via email.

Charlotte weighed (I think) 29.3 lbs, up from last time. I don’t remember her height.

Wanna know what dinner is really like chez Charlotte? Click here for 10 minutes of fun. This is how we’re working with CHOW between visits.


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In the Toe: A Feeding Clinic Update

On Daddy’s birthday the entire family drove up to Milwaukee for Charlotte’s bi-monthly feeding clinic visit. (An aside: Unlike our previous 2 visits, we made it there and back with no automotive events.)

Charlotte and Daddy. Or “Big and little Geyskens,” as I like to call them.

As we pulled into the parking lot, I asked Charlotte if she was hungry. Here is, more or less, our conversation:

Me: Are you hungry?
Charlotte: Yes! Eating!
Me: Where do you feel hungry?
Charlotte: In the toe!
Me & Philippe (trying hard not to laugh out loud): Where?
Charlotte: In the TOE!
Me: Oh. Where else? Do you feel hungry in your tummy?
Charlotte: No.

During her clinic visit, she ate more than a quarter cup of pureed taco and some pureed refried bean and to drink all of her Pediasure.

I guess that toe really knows what it’s talking about!

—————-

Drinking milk like a big girl. Charlotte loves her open cup. What a mess!

(Check out those biceps!)

And now for the serious part of the update (not that there is much serious about Miss Charlotte): The feeding clinic team is impressed with her eating. They expect that she might wean (or be weaned) off of the g-tube while only eating purees and drinking Pediasure. Chewing may take a while.

Dr. Long is still talking about in-patient weaning, though I dislike the idea more and more (especially during the summer). Frankly, I dislike it because Charlotte and I would be confined to the hospital for 2 weeks. Maybe that would be okay in December once my UIC semester ends, but on a gorgeous August day, yuck. Anyway, we’re on the wait list, so it’s not terribly imminent. Charlotte may make it a moot point if she continues to eat like a champ.

Her increased vomiting is something we just have to live with. Her meds are dosed appropriately for her weight. Basically, Dr. Long, Amy, and Julie (RN) said that if Charlotte isn’t upset by it and is still gaining weight, we should let it be. She’ll mostly likely grow out of it.

Charlotte’s official CHOW weight is now 28.8 lbs and she is 36″ tall. Three feet, baby! The weight gain is a bit low for a month, but we’ve had a stomach flu and a trip to Virginia, so we’ll reassess next week.