Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Read More, If You’d Like

I’ve posted a draft of an essay on foods we feed Charlotte over at Charlottesmom.livejournal.com.

I’m hoping to place or publish this somewhere, so I’m using Charlotte’s Journey Home to invite your comments and critques and questions.

Click here and read on!

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Feeding update

For your reading pleasure, and an update/reminder about Charlotte’s little peculiarity (her eating issues), here is the text of my email to the Wisconsin feeding team:

So, Charlotte is rather incredible these days. For the past week, she’s been taking 70-90% of all Pediasure offered by mouth. She’s back on solid food “strike”–she lets us touch her lips with the puree and takes a bite or two every day. She likes to nibble things she can hold or bite herself, but doesn’t eat anything appreciable. Purdue popcorn chicken and all Costco samples are her favorites. Seriously, she’ll eat more solid food while sitting in a cart at Costco than at the table. Yesterday she ate about 2 teaspoons of 7-layer dip, some off my finger (!). On Sunday she chomped on a wonton-wrapped fried shrimp in sweet-hot sauce.

She thinks food is fun–she likes to put it on top of her head, in her ears, on her nose. She very much likes to feed me Goldfish crackers, then open my mouth to see if they are still there, then put another. She’ll drink the Pediasure to get to the Cheerio or cracker she’s dropped in. She puts food in her mouth and takes it out if the bite is too big or if she changes her mind. She mostly smiles during meals. She always wants what I’m eating, even if it’s a grocery store sample (today it was a bite of steak at Whole Foods) or a turkey and mustard sandwich (seriously, she loved it). She drinks a lot of water when she’s playing hard. And she wants my coffee (I don’t give it to her).

Here’s the odd stuff:
8/2 thru 8/12: She took only 20-50 mls. of Pediasure by mouth at breakfast. We’d complement the rest by tube. Then she’d vomit horrifically, ending with what I call the reflux “death rattle” cough/gag. She was recovering from an ear infection and was on Amoxycillin at the time. We decided to serve Mylanta with breakfast for a week and moved her regular meds to later in the morning. We did this for a week. So…
8/13 thru 8/19: with Mylanta at breakfast, her intake steadily increased in the morning, the vomits went away. She vomited after lunch instead.
At the same time, her nap was switching to once a day.
8/19 thru 8/20: No more Mylanta at breakfast; meds back to regular times. Lunch vomited steadily increased. Nap cemented at 11:30 a.m. for 2-4 hours so…
8/25 thru today: At 10:45/11 a.m. we give her whatever she’ll take orally. We finish the feed after her nap. Over the weekend we were unable to complement to finish because we had to be in the car and pumping her in the car is a recipe for disaster. Yesterday she took 100% of b’fast and lunch/snack by mouth. Lunch vomit solved. But, vomits have moved to after dinner–—usually 1.5-2 hours after dinner so s,in bed and her sleep is seriously and painfully disrupted. It’s hard to hook her up for a night feed b/c it takes her a long time to settle down and we’re spooked about another bed vomit.
*I’m going to try giving her Mylanta with dinner for the next week and see if that helps. She doesn’t get p.m. meds until 1 hr. after bedtime, so there’s no med conflict.

Charlotte’s stats as of yesterday: 21 lbs. 14 oz., 31.5 inches, head= 45
She did have shots yesterday so that is a likely cause of last night’s fiasco.

Charlotte’s behavioral psychologist let me know that she’s fowarding the note to a GI for consultation on the vomiting. Midge, her nutritionist, will get back to us in a week or so.

I’ll keep you all posted.


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A Bit of Self-Promotion

If you like reading Charlotte’s Journey Home, but wonder what else I write about and how to read it, follow this link: http://charlottesmom.livejournal.com/

I call my LiveJournal site “The Other Side of Charlotte’s Mom.” Charlotte occasionally makes an appearance as a catalyst for my musings. Mostly, though this is an outlet for my creative non-fiction writing.

Feel free to comment, share, rant, whatever.

Did you know that someone starts a new blog once every 18 seconds? Or is it that 18 new blogs are started every second. Something crazy like that.

Good night all!


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Adventures with Charlotte


Happy Birthday, Bamma!

Charlotte has had many, many adventures since I last wrote. I’m not sure where to begin so I’ll just go in chronological order.

Occupational Therapy: Charlotte had her quarterly evaluation last week. She still tests at her birth or gestational age (15 or 14 months) for fine motor skills and shoulder girdle strength. Cheryl will keep monitoring her, but is not recommending therapy.

Dentist: We met Dr. Charlie Czerepak last week. Because of her acid reflux, Charlotte had her first dental appointment earlier than most toddlers. Dr. Charlie was adorable with her—he came into the waiting area and talked to me for a minute. Once Charlotte smiled at him, we went into the exam room. Charlotte sat on my lap and Dr. Charlie examined her many teeth (seriously, I’ve lost count) by quickly brushing them. We chatted about dental hygiene and that was that. We’ll see him again 4 months. Meanwhile we’re trying to get the urchin used to twice daily brushing.

Eating, Vomiting: Charlotte is steadily taking in 50-70% of all Pediasure that we offer orally. Fore two weeks she vomited every day after breakfast. This week she’s decided it’s more fun to vomit after lunch. But, we’re holding steady at one vomit a day. I’m working on a strategy to reduce even that.

She’s not doing much with solid food at all, not even her favorites. Okay, that’s not exactly true. She’ll nibble a crumb of a chicken nugget. Cheese and hotdogs get plastered on her forehead or on the top of her head. Goldfish crackers are especially good for tickling her ears.

And, her newest trick? Well, she likes to feed me! She methodically places a cracker in my mouth, watches me chew, and opens my mouth to see if the food is still there. If the food is gone, she puts another cracker in. This can go on for minutes on end. She giggles a lot!

Other adventures: The fun stuff. Well, Charlotte has finally shifted to one nap a day. So, we can do some fun things. Last week we went to Fantasy Kingdom—a big indoor playroom with a castle, village and dress up. Today, we visited the butterflies at the Peggy Noetebart Nature Museum. I don’t know who had more fun, me or Charlotte.

Charlotte crashed Eli’s Bar Mitzvah party on Saturday. Our friend Carol gave in to the little monkey (Charlotte, not Eli) and gave her an entire balloon centerpiece. As you can tell, Charlotte was in heaven. She walked around the room forever, getting tangled in the ribbons, falling down, standing up, and moving on. Giggling, giggling, giggling.

And, Daddy and Charlotte had their first coloring session together. Daddy drew a kitty cat. Charlotte loved it. She drew scribbles. Daddy loved it.

We’re having a blast!

That’s about all I can think of.


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Toddling Along & Loving Monkeys

Now that Charlotte is walking, I swear I’m too tired at the end of the day to think. She keeps me on my toes, literally! She’s quie entertaining. Here she is taking a break during parachute time at Gymboree. (That’s a bubble on her ear.)

Brief medical updates:
–Following her ear infections last month, Charlotte has developed a yeast infection. Philippe noticed a diaper rash last weekend. It kept clearing and reappearing. Finally, last night, it came back with little white dots on it. I’d been warned by my pal Darshani to keep an eye out for this when Nitara developed a particularly virulent yeast infection. Yeast is not an uncommon reacton to antibiotics for any toddler. It can be pretty nasty for a g-tube kid if the stoma gets infected. Fortunately, due to Nitara’s recent experience, I was on the look out. Short story long, we’ve now got little baby lubed up with Lomotrin (yep, the athlete’s foot antifungal!) and Dr. Smith’s Diaper Ointment. Dr. Smith’s smells like the eraser on a brand new pencil and makes me think of elementary school! I’ve also given her two doses of Florastar. All symptoms have already begun to abate.

–And…drumroll please…Charlotte now weighs 22 lbs. If you haven’t been keeping track, that’s a full pound since 7/25! Grow, baby, grow.

–Charlotte had her quarterly Occupational Therapy evaluation today. She’s still right on target with fine motor skills for her adjusted age (14 months).

Other news:
My brother, sister-in-law and niece visited last week. Hal & Sue stayed for a weekend. Taylor was here all week. (Another reason I’ve been an absentee blogger–we had so much fun and were up pretty late every night. And, when there is a 14 year old in the house, don’t expect access to your laptop 🙂 ).Charlotte and Taylor had a blast together. I had oodles of fun just watching them. And, Taylor kicked my sorry tush in Boggle!

We took Charlotte to the zoo for the very first time. Charlotte loved the monkeys. She cried when we left the primate house. Then the pigeons distracted her!

I’m hoping to have more pictures and maybe some video to post once the Goldmans have a chance to burn a DVD for me.


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Walking is FUN

I was going to update the blog this morning to note that yesterday was a DWOV. No vomit whatsoever.


But, then Charlotte trumped that update! First, I put her into the baby zoo and she took about 5 steps away from me, on her own with no prompt. Later, she walked from the couch to the bookshelves, on her own with no prompt, about 20 steps. Finally, she walked from the front door into the kitchen. I lost count how many steps that was. She looks like a grinning Frankenstein.

So, Charlotte’s stats for today:
Number of times she tried to put food in her ears: 14
Number of teaspoons of solid food she had for dinner: 2 Number of tunnels crawled through at Gymboree: 2 tunnels, 5 times each
Number of times she had me read Five Little Ducks: 5 Number of times we read Here Come Poppy and Max: 3
Number of times she finished the triangle, square, circle puzzle: I lost count
Number of times med port opened (yuck): 1
Number of times changed clothes: 1 (see above)
Number of unbridled giggles: Countless

Other important stats:
Weight (as of 7/24): 21 lbs
Number of teeth: 10 that I can see
Height: 31 inches (tee hee, now that she’s walking, we can say height rather than weight)
Number of meals Charlotte ate 100% (no tube supplement) in past 7 days: 2

Happy August indeeed!