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.”

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.)

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.

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.

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.

Sunday at our House

Believe it or not, Charlotte slept until 8:20 a.m. Did I use this time to get cracking on my enormous to do list? Did I prep a lecture, write a query about copy editing, or even do some laundry? Er…no. I set the alarm for 6 a.m. It awoke me from a disturbing dream (seriously, if I could do Julia Cameron’s morning pages, I’d have some amazing screenplays. I even had the privilege of taking a screenwriting with her in a previous iteration of my life. Geesh.) and I decided to let Charlotte be my alarm.
Oh well.

We had a quiet Sunday. We met our friends Esther, Dave, and Sarah at a street fair to watch Chicago’s Trinity Dancers. Charlotte was asked to step away from the stage as she attempted to join the show. Sarah stood at a respectable distance (though she is the one in focus in the picture–can you pick her out, Esther?).

My pals Sheri and Beth came for brunch. Charlotte was, I think, so excited about this that she didn’t fall asleep until nearly 1 p.m. and then managed to sleep through most of their visit.

I was hoping to report a great-eating, no vomit day, but, alas, we had a big vomit at dinner. (Charlotte did to her credit, finish an entire baby yogurt for breakfast and a quarter cup of pizza puree for lunch.)

On the vomiting front: I don’t blog about this often any more, but it’s gotten worse again. We’re seeing at least one significant vomit a day as well as many gags and mini-vomits. I’ve written a log of blog entries about this in my mind, but I loath writing about it. I am at my wits’ end and end every meal close to tears. Part of our CHOW strategy is to firmly tell her “no” when she gags. I have to yell at her when she’s in pain and unhappy because we can’t tell when it is reflux or behavior. So, in other words, I have to scare my baby and make her cry. It’s breaking my heart.
And what does she do? When I burp (yeah, I do occasionally burp), she pets my chest, looks concerned, and says “Mommy okay.” She thinks it hurts me to burp like it hurts her. She is the sweetest child I have ever known. And while I would do anything to change her medical circumstances, I would not do a thing if it would alter her personality.
Gotta go before the tears soak my keyboard.

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.

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.

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!

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.