Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Thinking of Leo

On September 19, I asked you, Charlotte’s community, to send healing thoughts to Leo Dubinsky, the child of one of Philippe’s Kellogg classmates who was battling inoperable brain cancer.

I am terribly sad to post this update–Leo passed away early Monday morning. We are stunned and heartsick. Our thoughts this week are with Leo’s mom, dad, and little sisters and extended family.

Zichrono L’vracha, Leo, may your memory be for a blessing.


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Crying Over Spilled Milk


When not causing her mother to cry over spilled milk, Charlotte can be found helping with household tasks. Here she assists with folding the laundry. Moments later she folded Daddy’s underpants using only her head.


Not everything at our house is beautifully written prose. Not every day is full of good grammar and good fun. Some days I just can’t take it.

Before you read any further, I want to clarify—this is not a complaint, though I think sometimes we certainly have a lot to complain about. Nor is it an attempt to make it seem like our parenting job is any harder than anyone else’s. I simply don’t believe in competitive parenting. No matter how difficult Charlotte’s medical situation can be, we are both always grateful to have our grinning, goofy kid in our lives. But, some days, I do cry over spilled milk.

At least once a day, feeding Charlotte is a battle. I have to hold one or both of her little hands firmly in my hand and put the glass to her lips. If she’s remotely cooperative, she’ll drink. Today’s post-nap snack found a most uncooperative urchin. She ate well at first and then got bored. She began flailing her arms, trying to knock the cup out of my hands. (Keep in mind that Charlotte drinks best from an open cup and does not feed herself. When she knocks the cup, it’s a mess.) I took one hand, then both hands and tried to get her to drink. She threw her head around, like a horse does when it really doesn’t want to follow your instructions, in order to avoid the cup.

We took a little break and Charlotte munched on a crunchy. Then I tried again. She flailed and tossed again. Then took a sip, and then tried to remove the table from her chair. She can pull the table off of her Stokke and if it were to fall, she’d get hurt. I had to sternly tell her “no.” She laughed. We tried drinking again.
This time, Charlotte was more violently opposed to drinking and managed to knock the glass pretty hard, dousing herself.

I lost it. I ripped the bib off of her neck and pulled her out of her chair. As I put her into her baby-zoo (playpen), I started to scream and cry hysterically. So did Charlotte. I turned away from her and screamed to no one in particular that I just can’t take it anymore. There we were, mother and toddler, each crying hysterically. Charlotte mostly wanted out of her baby-zoo so she could go rescue Mommy Kitty (who I had tossed across the room during lunch because she was distracting baby). Once she had Mommy Kitty, she was just fine. She’s playing nicely now, stopping every now and then to say “Ba ba ja dee da da.” As for me, I was literally crying over spilt milk. I eventually stopped crying, but, no, I’m not just fine.

This eating problem and reflux make parenting un-fun every time we sit down to eat. Philippe and I love to cook and enjoy good food. Yet, we fight daily with our baby to get her to eat. I worry that she’ll never enjoy a gastronomical experience the way we do, that she’ll associate eating with her mommy’s distress and anger. This is not something that goes away overnight, as normal as we work to make our lives feel and appear.

How many of my dear readers have to feed their kids this way? How many of you clean up vomit daily, after watching your kid bring it up in a painful, violent manner—we’re not talking stomach flu, we’re talking violent retching. We’re talking about the body basically rebelling. And then, the kid smiles when it’s over. She’s truly amazing. Do you have any idea how hard this is if I don’t tell you? Consider this a reality check, sent with love and gratitude that you’ve read this far.

Well, Charlotte’s pump is just about to finish her snack. What does the end of snack time mean? Well, it means just two more hours until dinner.

Martinis, anyone?


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Flavor of the Week and…

and, I’m going to use my “mommy perogative” and brag a lot about my brilliant, wonderful, adorable kid.

Flavor of the Week: Tuna Fish. Well, actually Charlotte sucked the tuna fish out of my sandwich a couple of weeks ago and asked for more. Today I made tuna salad (with mayo, tarragon, white pepper, and celery) and gave her some on a fork. As the picture shows, she was delighted with her tuna and with her macaroni and cheese. She also munched on a strawberry.

RIDDLE: If a kid eats tuna with one hand and mac-n-cheese with another, is she eating tuna casserole?

Speech development of the week: Charlotte finally responded correctly to the question “What does a sheep say?” She’s been saying “ba ba” for months now, but not making the connection between that sound and the white fluffy farm animal. Yesterday on her changing table she said “baaaa” quite enthusiastically, holding the “aaa” sound for effect. She repeated this feat for Sara, her physical therapist, today. Other animals sounds Charlotte can do on cue (when she’s in the mood): cat, monkey, cow. I’m looking for a tape recorder so I can post an audio clip. Stay tuned.

Gross motor development: Charlotte runs. Sometimes she careens and wipes out. Kind of funny. She usually gets right up, giggles and keeps going. Going around corners is particularly difficult. And hysterically entertaining.

Fine motor skills: (posting this just in case Cheryl, her OT, is reading). Charlotte’s Early Intervention annual review was on September 26. On that day, she was not yet able to stack things or use a peg board. On September 27 she began stacking. She can put 2 and 3 items on top of each other. And she likes to put one of her friends on top.

Just last week she began putting pegs in a peg board.

And she loves to color.

Finally, if you’re worried about the child of this SAHM (stay-at-home-mom for the acronym-impaired) having mommy-separation anxiety: On Tuesday when I left to go meet Philippe for theater, Charlotte waved goodbye to me and closed the door on my butt, grinning all the while.


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"Doctor"


As we left the house today, I told Charlotte where we were going. Then I said, “Where are we going, Charlotte?” And she said, “doctor.” Yep, one of Charlotte’s first recognizeable words is, fittingly, “doctor.” Okay, it sounds like “dek-ter,” but she’s working on it.

Charlotte met Dr. Z, her pediatric opthomologist, today. Like Philippe’s, Charlotte’s left eye droops and wanders a bit when she’s tired. Dr. Salem, her pediatrician saw this at Charlotte’s 15 month check up and, using the conservative wisdom she always does, sent us off to Dr. Z.

Bottom line: Charlotte’s eyes are perfectly centered (i.e., no wandering) as demonstrated in the super-close up photo the technician took (but is not allowed to e-mail to me. “We take pictures for our records, not Mommy’s photo album,” said Dr. Z. Okee-dokee.) She is far-sighted within normal limits. Did you know that all babies and toddlers are far-sighted?

Charlotte was a trooper. We arrived a few minutes early and she played contentedly in the waiting room. They had one of her favorite toys—a board with wires along which are wooden beads that she can play with. (I have no idea what this toy is called.) She was entranced for 10 minutes. Then we read books. She said “doctor” spontaneously several times so I’m pretty sure she knew we were waiting for a doctor.
In the exam room, Charlotte played with a smaller version of the same toy and with a stuffed dog and Pooh bear. Then she sat nicely on my lap while the technician looked at her eyes with a light.

Dr. Z came in and also looked at her eyes. Then, Lisa put drops in Charlotte’s eyes to dilate them. She did not like that at all. We spent 30 minutes getting Mommy breakfast (Charlotte ate some of my scrambled egg. Yippee!) and then went back.
This time Dr. Z looked at the back of Charlotte’s dilated eyes with the magnifying lens tool and a bright light. Baby sat on my lap and squirmed and flailed. But, she was pretty patient all things considered.

It was a long appointment and little sweetie fell asleep in the car almost immediately.


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Flavor of the Week


It’s not all high-brow around here. Spaghettios. Pureed. Yum. She ate at least 2 teaspoons. Woo hoo. Somehow I feel like I should apologize to Jennifershmoo, writer of Vegan Lunchbox. I hope she’ll understand that we each have to feed our children what they’ll eat 🙂 !!

She also likes

Israeli couscous. She eats it one piece at a time. Actually, I’m not so sure whether she likes it or sees it as a great delay tactic. She did eat about a teaspoon o it.

So, is it odd or sad that when my 17 month old (17 months today, ya’ll) eats 2 teaspoons of food I’m OVER THE MOON? Geesh.


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Cardiology Update

CARDIOLOGY UPDATE
Charlotte had her cardiology check up today. We’ve been a bit concerned because she sleeps a little bit more than an average toddler her age (14 hours/day to the average 13/hours a day). But, we weren’t too worried because she has no other symptoms—she doesn’t fatigue quickly, her color is good, and she keeps up with the other kids on the playground.

Today, Charlotte actually sat still—sort of—for her echocardiogram (ultrasound of the heart). She fidgeted a bit, but I curled up on the table around her, held her hands away from the ultrasound wand, and kept reminding her to watch Dora. Dora the Explorer, if you’re not familiar, is a lovely bilingual cartoon character who goes on adventures with her pet monkey (?) Boots. Charlotte doesn’t watch much television, but at the hospital we always watch Dora.

She started to scream during her ECG. This procedure takes all of 5 seconds. However, attaching the very sticky black stickers all over her chest, legs and arms is challenging. And removing them can be painful. Think duct tape. Anyway, Nurse Extraordinaire Toni kept Miss Charlotte entertained with some superior bubble blowing while Brenda and I got the stickers off.

Once Dr. Young had read all the reports, we met with her. Here’s the upshot:
Charlotte’s gradients (percentage of blood flow going left and right) have shifted again, with less and less blood going to her right lung. We expected this as it has happened at the past three exams.

Since it continues to devolve, we’re going to schedule a balloon angioplasty in the next month. Basically, Dr. Young wants Dr. Pophal to take a look at the conduit and valve from the inside, using a cardiac catheter. While he’s in there, he’ll open up her restricted artery as best as possible with balloon procedure. If you recall, we did this in August 2005. It is our best bet to delay open heart surgery as Charlotte begins to outgrow her “parts.” It’s an outpatient procedure and, if I recall correctly, we were home by 9 p.m. last time. Will keep you posted.

Additionally, Charlotte has been taken off Lasix. Only 3 medications of the original 7 (or was it 8).

PICU REUNION
While in the Cardiology waiting room, we ran into Patrick, the little boy whose room was next to Charlotte’s in the PICU last summer. Patrick was recovering from repair of complete AV canal defect. He was older than Charlotte at his surgery and had already suffered from severe reflux necessitating an NJ-tube (bypassing his stomach completely). The team was having a hard time weaning him from the respirator and things seemed, to us, touch and go. When his mom, Mary, recognized us, I was happily surprised to see a big, pudgy baby Patrick. He’s recovering slowly but beautifully, and he too has progressed to a g-tube. A little PICU reunion can be good for the soul. Hi Mary! Welcome to the blog.


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Flavor of the Week

Flavor of the Week

Charlotte LOVES smoked salmon cheese cake. Go figure. She licked and sucked her spoon as if it were a lollipop.

(And, yes, she does have other bibs.)

For a kid who doesn’t eat, we sure do get a lot of pictures of her eating. Tee hee.

On smoked salmon cheesecake: The recipe is by Jeff Nathan, my sister’s neighbor and friend, from his book Adventures in Jewish Cooking. As most of you know, I like my bacon cheeseburgers too much to keep Kosher, but with Jeff’s two cookbooks, I’ve been doing a LOT of kosher-style cooking recently. The cheesecake can be cut into one-inch squares and frozen.