Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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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Feeding Clinic Visit

Charlotte and I made the trek to CHOW for a 9:45 a.m. appointment. I won’t bore you with the driving details. Suffice it say, I left the house at 7:10 a.m. and pulled into CHOW’s parking lot at 9:35 a.m. It’s a 90 mile trip. The first hour was spent driving the 15 miles between my home and Wilmette IL. Charlotte asked me to let her out of the car, which she never does. We stopped at an oasis and “did laps” around the car!

The clinic visit went well. We met with Dr. Beth Long (the behavioral psychologist) and Amy Delaney. They had me observe while they fed her. Feeding is not Charlotte’s favorite thing, so it was especially difficult for me to not be allowed to comfort her when she got upset. Amy and Dr. Beth fed Charlotte hospital food (oh joy!)–special purees of pizza and green beans, ice cream and potato chips.

We’ve all agreed that Charlotte has some oral-motor ability problems. She has problems fully opening her mouth on command to place food on her back molars. She also has problems elevating her tongue to touch her upper lip (to lick food off the lip) and moving her tongue from side to side (to move food onto her molars).

This explains, of course, why she sometimes “hoards” food without chewing–she is not able to move the food onto her molars. Sometimes a small swig of milk lets the food move; sometimes it causes her to spit it all out.

The CHOW team is going to work with Laura, our local feeding therapist extraordinaire, on strategies to improve Charlotte’s oral-motor skills. We even have “chew toys” to give her more oral input. I’m having a hard time figuring out when to use them and how exactly, but when the folks at CHOW use them, we see marked improvement

The ride home was pretty quick, save for getting rearended by a Penske rental truck at a highway exit. If you’ve known me a while, you probably know that I’m a magnet for people who like to rearend other cars. As a result, I have a herniated cervical disk or two. Fortunately, I have a great chiropractor and wonderful yoga instructors, so this accident wasn’t too bad.

We treated ourselves with a trip to the Chicago Botanic Garden with Miff and Susan on the way home. Charlotte gave the three of us a guided tour of the kitchen gardens.


Next trip to CHOW: Thursday, June 21.


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Feeding Update

On Wednesday, we went to CHOW for a sort of “emergency” intervention with Charlotte’s feeding. Basically, she has started pretending to gag. She forces the gag strongly enough to make herself really gag and then, sometimes, to vomit. Most of the time, you can tell a real gag/reflux episode from a behavioral episode, but not always.

I wanted to learn techniques to stop this behavior before she’s in hospital next week because I’m really, really afraid to lose ground on the feeding front in her recovery period. We’ve noticed that when she wants to and is feelign well, Charlotte can drink 7.5 ounces of milk and eat a tablespoon of food. We’re looking for tactics to help make that kind of meal the norm.

She forces the gag to try gain control over her feeding, to determine when the meal ends, or to get attention.

So, we got to CHOW and she ate like a dream. She dove into her salmon and macaroni and cheese with abandon. She drank all by herself from a sippy cup. (Now, I know most 22 month olds feed themselves, for the most part. But, remember, if you will, that Charlotte does not.) She was perfectly well behaved. Of course. I told the doctors ahead of time that I was sure she would be an angel for them.

When she was done, Dr. Long taught me some techniques to stop the gagging. Basically a) ignore the behavior or/then b) startle her by saying no (much in the same way you’d talk to a puppy about to pee on the floor). Verbally remind Charlotte to chew and swallow while stroking her cheek and throat. Keep the meal short, 15-20 minutes max. And praise, praise, praise when she feeds herself, chews a good bite, etc.

Hats off to CHOW. It’s been 4 days and we’re already seeing VAST improvement in her mealtime attitude. Her solid food quantities seem to have doubled since Wednesday and her milk intake is consistently 3-5 ounces in a meal.

Fingers crossed that we’ll see this continue after surgery.