Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Caption Contest

This picture was taken sometime in April and I’m still so in love with it. As Charlotte continues to run for mayor of every establishment she enters and she chats with each and every stranger who passes her, this photo seems to really capture her outgoing personality.

So, dear readers, offer up a caption for this photo. There will be a prize. Don’t know what yet. Maybe an autographed photo of the little tyke.

It will be more fun for all if you leave your caption as a comment (you’ll need to sign in to Blogger, but I don’t think it’s something to worry about), but you can email them to me.

Deadline: Wednesday August 2

The judges will convene and announce a winner shortly thereafter.


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Zippity Doo Da

Three guesses what Charlotte did today. And three guesses what she hasn’t, so far, done today.

Since my mother and brother didn’t get it right, either, your first two guesses don’t count
Bamma and Hal’s first guesses were:
Took her first steps (nah, she did that last week, I just forgot to tell you all)
Said MaMa (nope, she said that once last week and I forgot to tell ya’ll, but she hasn’t done it since)

So…have you figured it out? Scroll down…
(photo has nothing to do with the answer, just a cute delay tactic)

Well, Charlotte drank her entire breakfast and then some. She guzzled down 220 mls. in about 25 minutes. That was the most she had ever drunk at one sitting. And, she didn’t vomit.

We thought it was a bit of a fluke because our friend/babysitter Beth said that she’d had a huge vomit after dinner last night and then had had a tube disconnection issue at bed feed. So we figured it had been nearly 18 hours since she’d had a full tummy. Still, even when absolutely starving, Charlotte will guzzle about 3 ounces (90 mls.) and then just stop. This morning, she guzzled and guzzled. She didn’t want any solid food, just milk and more milk pleased. (Okay, Pediasure, but we call it milk.)

Then, just 3 hours later, she drank her entire lunch, 230 ml. Not the same guzzling, just a nice healthy pace. And she ate about a teaspoon of solid food. And, she did not vomit.

We had to delay her nap, so I attempted an oral feed at naptime. She took 35 ml (of 65 needed). And at dinner she drank 145 ml. (of 240 ml.). And, she did not vomit.

So, if you don’t want to do the math: Charlotte drank 630 ml. on her own today. And, she didn’t vomit.

Now I have to go do her bedtime feed. As part of the CHOW adjustments, we’re increasing it tonight so I hope I haven’t jinxed us with my refrain. Keep your fingers crossed. It wouldn’t be our first DWOV (day without vomit), but it would be the most extraordinary.

Extraordinary, indeed. I got a glimpse today into life with a regular kid. And, boy, is it glorious. It was so easy to get up and go with her after a quick meal.Instead of chasing Charlotte with her pump (she can’t quite wear the backpack yet), I got to play with her, take her for an unfettered playtime in the park, enjoy her Gymboree music class, and really, really, really enjoy Charlotte. After dinner, I pumped the last 3 ounces in half an hour, so Charlotte got to go to bed on time (we had a late nap because of a doctor’s appointment). I know this isn’t yet a trend, but I could get used to this!


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Cheesy Eggs


A picture is worth a thousand….calories!?!? Well, not quite, but this is the face of a kid who had her first scrambled eggs yesterday and loved it! After the meal, I went to wipe her face and she grabbed the last piece of egg and crammed it into her mouth.

This reborn enthusiasm for food seems to grow out of the introduction of blenderized foods. Needless to say, we were thrilled about this CHOW recommendation, as was our Feeding Therapist.

We decided to introduce blenderized foods immediately, without the extra calories. We started with macaroni and cheese, blenderized with skim milk. The results were amazing! She loves it–every time she bites a noodle, we give her some mashed macaroni on a spoon. We have quickly seen an improvement in her solid food intake. When she’s willing to eat, she’ll take as much as two teaspoons. Okay, for most 14 month olds, this isn’t much. But for Charlotte it’s huge.

The scrambled eggs blenderized with skim milk and cheese sauce (a few extra calories). Charlotte ate about 1/3 of an egg and a teaspoon of the blenderized version, mostly feeding herself.

Unfortunately, Charlotte has been vomiting 2-3 times a day, up from our once a day average. The “urpcidents” are increasingly painful to her and horrible to witness. I’m not sure if it’s the heat, the teeth she’s cutting, her medicine dosing (she’s gained a lot of weight since her Pepcid was dosed), or the new feeding schedule. She sees her GI doc on Wednesday and we’ll discuss meds at that time.


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Happy Birthday, Daddy!!!!!




Charlotte’s daddy celebrated his birthday today–in NYC where he has traveled for business this week. We were very sad because we couldn’t wake him up with a shower of baby smooches to celebrate. And, of course, Miss Charlotte babbles all day long, but just stares and smiles at the telephone. Oh well.

Happy Birthday, Charlotte’s Dad!

Charlotte and I went to CHOW for a follow up with Dr. Long, behavioral psychologist, and M. Kirby, nutritionist. Charlotte ate beautifully. Not surprising since she’d eaten terribly at breakfast (5 ml.) and then vomited hugely before we left. Dr. Long and Midge were thrilled with Charlotte’s progress. (At least she vomited at home and not in the car.)

Here’s the scoop: –Stats: 20.7 lbs, 31 inches –Charlotte has gained more than a pound since her 5/31 visit. The team was thrilled with her weight gain. She’s jumped up the growth chart, but I didn’t write down the exact stat (sorry, Philippe).–Over the past 3 weeks, we’ve missed her nap feed about 2 out of 5 times. Midge calculated that she’s had this stupendous weight gain on an average of 920 calories as opposed to the 960 we’re supposed to be serving. This is good news in terms of our goals. –Our goals: Getting rid of the ever-frustrating, ever-elusive nap feed.–The plan: Slowly phase out the nap feed. Once it’s gone, we’ll add blenderized high-calorie food and then Duocal to add even more calories. (The Duocal may have been the culprit in much vomiting earlier this year–the vomiting decreased when we cut the Duocal. Since she also got really active at the same time, we’re not sure of cause and effect so we’ll keep an eye on it.)
What is blenderized food? Following recipes from our team (and, I’m sure from P2P), we’ll make things like super-charged, high calorie meatloaf blenderized (not quite puree) it with gravy and beef broth. Adding all these calories, and hopefully enticing her to eat more solid food, will help get rid of the nap feed.
That’s the upshot of the feeding clinic visit. We’ll do another follow up in 4 to 6 weeks. Stay tuned.

We had an uneventful ride home. Charlotte, who did not nap on the way to Milwaukee, was asleep before we left the parking lot. I listened to Gary Sinise read Of Mice and Men. Sooooo gooooood. Baby slept all the way to Skokie where we stopped to do some birthday shopping for Daddy. Charlotte saw a little boy with a balloon and…ootzed until I found her a (well-deserved) balloon of her own. Then she was perfectly content for two hours of mall-walking!

Heading home, Charlotte chatted all the way down the highway. About 5 minutes from home she suddenly stopped talking and vomited, two hours after a feed. Poor thing—it was clearly very painful. I had to pull over in front of the place where the neighborhood homeless men all bring their aluminum to turn it in for money. I’m sure that I was quite a sight stepping out of the BMW to strip my kid. Two seconds later she was happy again and off we went.

By the way, yesterday was a “DWOV” (day without vomit) but today’s 3 biggies sure made up for it. Yuck! In fact, I think I need to skip tonight’s bedtime feed because she’s not so soundly asleep and I can’t stand to have her be miserable again today.

That’s it for now!


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Independence Day

Charlotte loved Virginia Beach! Like her Nenenne in Belgium, Bamma had borrowed a booster seat and stroller and she had some great toys left from when our nieces were little.

We got her to the beach on Friday for the first time and she loved it. By the second time I carried her over the dune, she got visibly excited to see the ocean and the sand. She was not uncomfortable on the sand—actually, she got right into it and onto it; playing and crawling in the sand, eating it, and grinning from ear to ear. Our neighbors had a little kiddie pool set up and Charlotte took up residence. We had hoped she’d play with its lovely owner, Virginia, but the girls had exact opposite nap schedules.

Our cousins came down from Richmond to visit with Charlotte. First, Flo and Tony arrived for lunch. They really hit it off with Charlotte. I’ll post a picture here soon. Then Helen came down with her children, Lauren and Nick. We had a blast hanging out with them and Charlotte truly enjoyed her cousins.

I could go on and on. As for the highlights everyone will ask about:
–She slept through the night from our arrival
–She got herself back onto her nap schedule by Sunday
–She ate pretty well
–She vomited about once a day, much less volume than at home
–She had hardly any congestion

Rather than give you a travelogue, I’ll let the pictures speak for themselves.

We’re not really independent—that feeding tube goes everywhere with us and we have to be prepared for an imminent “urpcident” at any time. But, we are far less encumbered than we were this time last year. Flashback for a minute: July 4, 2005, Charlotte’s paraphernalia included an oxygen tank, a large feeding pump, an NG tube, formula that had to be thickened, and about 7 medications that we dosed about 5 times a day. Little by little, we’re getting there!