Wednesday, December 31, 2008

New Year's Eve Chicago Kid Style

Our New Year's Eve celebration began at 10:00 a.m. (yes, you read that correctly) on the 31st. We met Charlotte's buddy Taylor and her parents at the Navy Pier Winter Wonderfest. For lack of a better description, Winter Wonderfest is an indoor amusement park with a winter and holiday theme that is staged in the big festival hall at Navy Pier. It is nothing short of spectacular!

Right at the entrance, Charlotte was hooked. She fell in love with the decorations, especially the inflatable bear.

Then she hit the slides (inflatable and traditional). Rode her first Ferris wheel and LOVED it. Found the perfect horse on a carousel. And we all took a train ride. (That's Susan and Taylor with us, not to be mistaken for Aunt Sue and cousin Taylor!) We joked that the girls' pictures will always be their moms and them because their Dads were taking the all the photos!

And, we also decorated (and ate) sugar cookies at the Ginger Bread House.

This is Charlotte's homage to Heath Ledger.

Later, Charlotte had some McDonald's french fries and a few bites of burger. It was a super-exciting fun morning. Charlotte was wiped out and took a 4-hour nap!

I think Charlotte would like it to be New Year's Eve every day!

Sunday, December 21, 2008

Happy Hanukah!

The best part of Hanukah when you're 3-years old? The presents. Tonight Charlotte got her very own guitar! I think she would have slept with it if we'd let her.

Or is it Chanukah? Or Hanukkah? Does it really matter?
A Hanukah Story to share with you:
Every month Charlotte's teacher, Celine, works with a theme. This month the theme has been "the holidays" which has mostly meant Christmas. The children have made a lot of Christmas trees--Céline uses the "art" projects to teach basic math skills like matching and patterns, and to work on fine motor skills (like putting small items in glue to decorate). Since it is a French school, the teaching of the holidays is "secular." That is, they learn about Santa and reindeer, but not about the religious meaning of the holiday. Still, I was getting a bit overwhelmed by talk of Christmas tree projects and by seeing nothing but said trees, ornaments, and the like hanging in the hallways.

So, Friday was the last day of school before break. Charlotte climbed into the car and immediately pulled out of her backpack a bag of Hanukah gelt!!! (The chocolate kind.) She proceeded to explain that her teachers had given everyone a bag of gelt and had talked about Hanukah in class. They played with a dreidel and everyone put a candle in a menorah.
I cannot begin to express how touched I was.
This weekend Charlotte made a menorah. I sometimes feel that she gets cheated out of some Jewish holiday learning because she doesn't go to Jewish pre-school. So, when I saw a homemade menorah at our temple Hanukah party, I got inspired. Charlotte did everything except hot-gluing the nuts and bolts. Check it out:

Monday, November 03, 2008

Fettucine Alfredo

At the suggestion of dietician extraordinaire Sara from CHOW I introduced Charlotte to fettucini alfredo this week. Charlotte would subsis on Spaghettios and Amy's Ravioli if I'd let her, so we're trying to broaden her horizons.

What she lacks in quantitiy eaten she makes up for with exuberance! (She's eating up to about 2 tablespoons, but she earns dessert by eating nicely, so we get the calories in....)

Friday, October 31, 2008

Trick or Treat

I didn't get to go trick or treating with Charlotte last year because of my teaching schedule. I was really disappointed. So, of course I was terribly excited to take her out this year. Lucky me, she wanted to wear the same costume as last year and it still fit. She was talking about going trick or treating "with mommy" all day, so I think she was pretty jazzed, too. Philippe is in Germany for business, so he missed out this year. These pictures are for you, Diddy!

Charlotte is dressed as a "bubba doctor" (Bubba is Charlotte's bear and also the generic affectionate term she uses for all bears), sporting Children's Memorial Hospital scrubs given to her by friends at the Children's Memorial Foundation just before her second heart surgery. (No, I can't resist a plug for the hospital! That's a link to the online donation form for the Children's Service Board.)

Hitting up the neighbors with her buddy Taylor. Yes, Charlotte is VERY tall, but T is about 8 months younger and no shrimp herself!

We headed out in Lincoln Square with Charlotte's buddy Taylor. The girls were very excited to go to each house and get more candy, but not so sure about knocking on the doors by themselves.

At around 6 p.m. Charlotte had a meltdown about wanting to get on with it and go to more houses for more candy. I quickly realized that it was a dinnertime meltdown so I had to cut our afternoon with friends short and drag the poor thing home. It was not my best mom moment, involving yelling at her in public and dragging her (literally) back to the car. By the time we got home, all was well and we hit two neighbors' homes en route to dinner. Charlotte was very excited to see our neighbor's dog dressed as a pumpkin, but she is still talking about how she didn't really like the skull with moving eyes in our next door neighbors' candy bowl.

She was practically too tired to eat dinner (but not to eat candy!). Dinner took forever because Charlotte stopped to yell "Happy Halloween!" and "You're welcome!" to all of the Trick or Treaters who came to our house while she was eating.

When Charlotte finally went to sleep, I recovered with our traditional Halloween treat--cocktails on the front porch with our favorite neighbors, Richard, Cynthia, and Marcy. It's the one time a year I see Marcy. We had some serious fun involving a radio-activated rat and gals walking to the neighborhood bars.

I think she's a bit sad to see all the Halloween decorations come down. She's been enjoying all the different spiders in the neighborhood!

Wednesday, October 29, 2008

Feeding Clinic Visit

Charlotte with her favorite monster last Sunday. She's still talking about her celebrity encounter!

Charlotte and I visited Sara, her dietician, at Children's Hospital of Wisconsin today. Charlotte's "official" CHOW weight was 15.3 k, or precisely what it was back in June. While her vertical growth (she's up to 3 feet 5.75 inches) is steady, Sara is a tad concerned that her weight gain is flat. Charlotte has gone from 94% ideal weight for height to 90% ideal weight for height.

Charlotte did have 3 ear infections in about 6 weeks (August through September), followed by a 24-hour "summer fever," all of which dampened her appetite in the past two months.

I'm hoping that now that she's healthy (save for a sniffly nose), she'll start chowing down again. But, we're back to needing to be vigilant about caloric intake, adding calories where we can, and worrying about food and weight.

On the bright side:
  • We don't have to worry about reflux. Even with her last ear infection and her current runny nose, we've not seen any gagging or vomiting.
  • She is in the 97th percentile for height for her age (not quite 3 1/2). To put it another way, she's average for a 4 year old (and in our experience, she's as tall or taller than most 4 year olds we know!).
  • Sara loved the broad range of foods Charlotte will try or will eat.

Tuesday, October 28, 2008

Opthamology Update

On a tire swing during a family trip to the park last Sunday. She spun so much that she wobbled for some time when she got off. And giggled, of course.

Charlotte saw her eye doctor today. She really hated the flashlight shining in her eyes and she hated the eyedrops even more. But everything looks good for now. Her prescription hasn't changed and Dr. Z. seemed happy. We go back in 6 months.
After Charlotte's appointment we crossed the street to quickly get a flu shot and a blood test for me at the office of Dr. Gale, the doctor who brought Charlotte into the world. Charlotte payed rapt attention while my blood was drawn; her biggest concern was that I shouldn't need a bandaid (she hates bandaids). Dr. Gale was so excited to see Charlotte. I think the last time she saw Charlotte was nearly 2 years ago. And, Charlotte was excited to learn that Dr. Gale knows Dr. Z. You see, everyone knows Dr. Z!!

Tuesday, September 23, 2008

Just a Regular Kid, Sometimes

Charlotte has been confounding us for the past month or so. As I reported in June and early July, Charlotte was eating beautifuly earlier this summer. She ate willingly, chewed nicely, and was beginning to eat like a regular kid. Or, at least the way we assum a regular kid eats.

Then, sometimes in mid-July, she slowed down, started fighting us again, and seemed to backsliding. At the same time, she came down with what turned out to be the first in a series of three back-to-back ear infections. The first and last ear infections were double.

Last week's final hurrah crescendoed with one ear bursting, unbeknownst to me, and a nearly sleepless night. On Friday Charlotte had her first "sick day" from school. Though she didn't have much fever, the ear infection and sleepless night knocked her out.

The picture above was taken at around 10:00 a.m. Little honey--she climbed up on the couch to rest and cuddle. I walked away to answer the phone and when I came back she was sound asleep. I had to wake her up to take her to the doctor.

Through it all she was sweet and cuddly, patient and kind. This last dose of antibiotics seems to have knocked the demon ear infections far away. How do I know she's finally cured? She simply can't get enough to eat!!!! Including her hot lunch at school....

Thursday, September 11, 2008

Big and Little

Philippe is in Belgium helping his mother move and I never got around to blogging while we were on vacation last month. So, here's a picture of Charlotte and Daddy playing around the hermit crab sculptures on the boardwalk in Virginia Beach. My "big" and "little" Geyskens, as I call them!

Lasting Forever: Jeffrey B. Gardner

Early this week, Charlotte said perhaps the most endearing thing she could ever say to me. In the midst of some post-bath silly conversation about mothers and daughters, she looked me squarely in the eye and said, "I hope you last forever."

I was taken aback because I know that I won't "last forever."
Today, September, 11, I am reminded how quickly that "forever" can evaporate. Seven years ago I was driving to work in Buffalo Grove, IL. I was listening to WXRT and suddenly at 7:48 a.m. CST or so, Mary Dixon (my friend and the newscaster) broke into to the music broadcast to announce that a plane had just flown into one of the World Trade Center buildings in New York City. At that time, that was all she knew. They thought perhaps it was a little personal plane., an accident, a stunt.

I remember the crystal clear blue sky as I followed the highway past the Chicago Botanical Gardens and Mary and Lyn speculated about what might have happened.

A little while later, I stepped out of my car and a colleague who has worked for "a small office in Virginia," if you know what I mean, called across the parking lot to me: "A second plane hit the other Tower. It's terrorism. Get inside."

We spent the rest of the morning in a conference room watching the news. Were people really jumping off the World Trade Center Towers? Had more planes been hijacked? Where was my husband? (Safe in Minnesota where he and his colleagues were able to rent the last car in town to drive home.) Where was my brother? (Also on a business trip. He too was able to rent a car and drive home.) Where was my mother? (At a dog-related meeting in Newark, NJ, unable to leave for quite some time because the highways were clogged.)

In the blink of an eye, at 8:59 a.m. CST, the unbelievable happened, the South Tower collapsed. We truly couldn't believe what we were watching. As if to confirm what we saw, the North Tower collapsed less than 30 minutes later. Its 9 second crumbling into dust is etched into my mind. Nothing, not even buildings built to withstand the impact of a 707 airliner, lasts forever.

What I didn't know at the time was that my high school friend Jeffrey Gardner was in one of those towers. Today, as I drove home from dropping Charlotte at pre-school, I wondered about his last moments. Was he injured in the initial impact? If not, then I know with all the certainty in my heart that Jeffrey stayed in that tower to help other people and he sacrificed himself to do so. That's just the man he was.

For the past two years, I've posted a sort of memorial essay about Jeffrey. Last year, in response to my post, I was contacted by my best friend from elementary school. Even in death, Jeffrey unites people and reminds them of the light that he brought to our lives.

So, again, here's my essay. Please take the time to read it and remember that while "America [was] under attack," as Andrew Card famously told President Bush 7 years ago, very real people were being injured and murdered. The ripple effect of their loss cannot ever be forgotten.

(Originally written on 9/11/2006)

Jeffrey B. Gardner died [7] years ago today when the World Trade Towers collapsed. I had known Jeffrey for as long as I can remember, growing up in the same town (Livingston, NJ) and attending religious school at B'nai Jeshurun together.

More than a boy I grew up with, Jeffrey was a dear friend throughout my high school and college years. We were both socially conscious teenagers and active in our temple youth group and in JFTY, the Jersey Federation of Temple Youth.

Like all of the people who have signed his guestbook, I can attest to Jeffrey's special qualities--his goodness, kindness, wisdom, and sense of fun. I can also recall his pride as he listened to his father sing in the temple choir on the high holy days, his clear affection for his siblings, and his love for his mother.

Jeffrey and I, along with 20 other Jewish teens, spent a special summer together in 1982. As part of the JFTY Urban Mitzvah Corps, we lived in a fraternity house at Rutgers (later Jeffrey's alma mater) and volunteered for various organizations in the New Brunswick area. We worked with the elderly, disadvantaged children, and the disabled. In the evenings we studied and played, enriching our Judaism and bonding as a group in a way that is immeasurable. Jeffrey lived his Jewish values and he taught us how much fun (and mischief) we could have within the limits of a moral, thoughtful life.

My father had a special place in his heart for Jeffrey. Not just because they were in the same business, but because Jeffrey was respectful, forthcoming, and friendly. In business, my father could count on Jeffrey, just as I could count on him as a friend.

Since Jeffrey's death, I've learned that he continued to live those values for the rest of his far-too-short life. He read the Christian Bible and the Koran in order to understand other people's belief systems. He volunteered with Habitat for Humanity throughout the hemisphere. He worked hard at his career and prospered.

In his obituary, his sister Amy noted that he had a sun tatooed on his ankle because "a good day was as bad as it got. " Jeffrey shone like that sun. Even when we weren't in touch for a long time (we hadn't spoken for about 3 years before his death), I felt his presence and the mark that he made on my life.

On that perfect sunny September morning, a day eerily like today in Chicago, hatred hilled Jeffrey. The irony that intolerance killed a soul who embodied tolerance is not lost on me.
I dedicate today to Jeffrey--as sad as I am for his loss, I strive to live a life of which he would have been proud, to be tolerant and kind and strong as a tribute to his memory.

Rest in peace, dear friend. You are indeed Z"L (Zichrono Livracha), of blessed memory.

Thursday, September 04, 2008

First Day of School

It's hard to believe that Charlotte is old enough for the first day of school, but indeed, today was Charlotte's first day of school. She is in the petite maternelle (pre-kindergarten) at the Lycée Français de Chicago. It's 4 full days, one half day a week. I drop her off at 8:30 and pick her up at 3:15. When we applied a year ago, I didn't think she'd be ready. Now she's not only ready, she's eager.

We're excited that she'll be getting a wonderful bilingual education that will enable her to speak with Philippe's family. And, we're thrilled that she's in such a nurturing, loving environment. Her teacher, Celine, was one of the camp counselors and we know how kind and collaborative she is. After dropping Charlotte off today, we now know also that she greets her students with big hugs.

Charlotte was very excited about school. Yesterday we had a playdate in her classroom to acclimate the children. She wouldn't let me out of her sight. Today, however, once I'd walked her in and had given her a hug she said, "Mommy, you can go now." She had been telling me all week that she was going to "like it there" and she did. Tonight she asked if she could go back tomorrow.

Don't expect bilingual audioposts just yet. Celine explained at a parent meeting that it can take the American children up to two years to speak French. As she noted, it took them two years to learn English, we can't expect them to learn French any faster. But, we know that her comprehension of French improved greatly in 3 weeks of summer camp, and can imagine the same in pre-k.

Why is she not holding her backpack? Because she made me carry it in!

Sunday, August 24, 2008

Another Milestone

I finally had the home healthcare company retrieve the Zevex pump and all of its accessories. We'll miss our friendly delivery man, Vince J., but we won't miss the pump.

Charlotte's eating is very inconsistent, which I suppose is pretty "regular" for a toddler. When she eats well, however, her volume is stil pretty low for a kid her age.

We did have a major meal on Friday night--Charlotte ate 5 (!!!!) raviolis, all by herself. While volume is important, we know we can make up for calories with our high calorie purees and dessert (the kid is definitely ours--she loves dessert). So, we're really working on self-feeding as that will be the key to success in school.

It's Official, Charlotte is

a big girl now. And not an inch too soon. When she stretched out on her crib mattress after we took the crib apart yesterday she had about 2 inches to spare at either end.

She hasn't quite mastered the big girl bed yet. I just found her parallel to the foot board at the foot of the bed and had to move her. Philippe had to rearrange her last night, too. It's a good thing she's not a light sleeper because we just pick her up and move her!

The bed is full size because we had a convertible crib. So while she looked huge in her crib, she looks tiny in her big big girl bed. But so peaceful.

And when she's awake, climbing onto the bed and bouncing on her bum is her new favorite activity.

And as big as she is, Bubba is always there to help her sleep!

Saturday, August 16, 2008

The Joy of Cooking

With all due respect to the classic cookbook....

Wednesday, August 13, 2008

Eating Update

The tummy tube is, famously, gone since June 5. When asked to show someone "What's new?" or "What happened in Milwaukee?", Charlotte promptly rolls up her shirt. Or, she does it with a great deal of drama, rolling up her dress slowly so that the observer can first think that the big girl underpants are the big news, then going for the "reveal." As proud as we are of Charlotte, she is more proud of herself.

And she should be. think Charlotte is now a regular kid, right? Mealtime is easy or hard, like it was (or is) with your toddler? She eats or she doesn't and makes up for it the next day.

Would that it were so.

In May and June, Charlotte fed herself with regularity, and much encouragement. Throughout July this behavior deteriorated. I began to feed her more and she began to feed herself less. Mealtimes devolved into time outs, yelling, bribery, and utter frustration.

At first, I chalked it up to Charlotte being tired from being at day camp all day (more on that soon, I promise). We instituted a "Happy Meal" Sticker chart--for every meal in which Charlotte feeds herself (for the most part), within a 25 to 30 minute period, and behaves pleasantly, she gets a happy sticker. For very 10 stickers, she gets to watch 30 minutes of a DVD. [We say "happy sticker" because Charlotte really can't say "smiley."] This worked for a few days.

After camp, however, we realized that camp had little do with it. Further research proved that Charlotte feeds herself just fine when she is with her babysitters. But for mom and dad, no way.

Last Friday, I lost my mommy cool. Completely. So we instituted a new rule--Feed Yourself or Don't Eat. She gets 25 minutes, lots of encouragement, help getting food on the fork or spoon if she needs it.

Guess what? Charlotte has had about 5 days of happy, happy eating. Mom and Dad still don' look forward to mealtime, to be honest, because we're never sure what's coming But, we've been pleasantly surprised and have had some lovely family meals.

Friday, August 08, 2008

Cardiac Update

Cardiac Update:
Charlotte had her semi-annual cardiology appointment today. (I like to call this the "Remember, she's a heart patient?" appointment. )

She weighed in at 15.4 k and measured 41 inches (104 cm). Her electrocardiogram (EKG) was normal despite the fact that she cried and coughed through the whole thing.

Dr. Young wants to see her in about 9 months. She'll have to have an echo and a 24-hour halter monitor (portable EKG). So, now you know our plans for spring break!

And that, my friends, is the Cardiac Update in toto. Did you ever think it could be so short?

Now for the Cardiac Appointment Hi-Jinx Report:
Charlotte tried so hard to be brave during her EKG, but the minute Amber started putting the leads on her legs she began to cry. Crying led to flemmy coughing due to her ear infection. She fussed the whole time.

Once she was calm after the test, we did some coloring. Charlotte stopped coloring and put the crayons in the crook of her bent knees. She then proceeded to tell me that we were pretending the crayons were EKG leads. "We have to put them in kind of slowly," she said "and then pull them out fast." Over and over and over. The backs of her knees are covered with blue crayon polka dots.

Right now she's listening to my heart (with her real stethoscope) and watching Finding Nemo (for the umpteenth time).

Monday, July 28, 2008

My Cheeky Three-Year Old

Caption contest: Add a comment with a caption for this fabulous photo (watch out Fancy Nancy, here comes Charlotte!). The winner will get a copy of this priceless photo.

True story:

At breakfast, I had finished everything but my coffee and a few bites of my muffin (carrot-ginger, if you must know!). Charlotte was eating like a slow-poke (as usual) and I was trying to cajole her to eat her yogurt. So, I said, “Look, I finished my yogurt,” and I took a sip of coffee. She looked at me and said, “Mommy, I appreciate that you are thirsty, but you really need to finish your muffin.”

I nearly fell off my chair hearing her repeat to me the things I say to her to get her to eat. I’m sure she doesn’t truly understand what she’s saying. And she can barely pronounce “appreciate.” I'm learning more and more what I sound like as a parent as my little parrot role plays with me. Sometimes it's not terribly flattering and I try hard to retool my approach when I hear things I don't like being repeate. Sometimes it's just unbearably funny, like this morning.

Another true story (written here with Philippe's express permission):

I said something really fast and she thought I said “I’m Baxter.” (Baxter is my brother's dog.) And the following conversation ensued:

Me: You thought I said, “I’m Baxter”? And that was so funny?
C: Yeah
Me: But, I’m mommy, I can’t be Baxter.
C: But Baxter can be a mommy one day.
Me: Not really, because Baxter is a boy. Do you think you might grow up to be a mommy?
C: No.
Me: No?
C: No, I’m going to grow up to be a daddy.
Me: How are you going to do that? Daddies are boys.
C: Well, I’m going to grow up to be a big man. I’m going to grow my hair big.
Me: Oh?
C: Yeah, I’m going to grow my hair big so I can have a beard. And I’m going to grow a big head. Because Daddy has a big head, so I’m going to grow a big head, too.

At this point I was laughing too hard to remember the rest. Note—I did not prompt any of Charlotte’s comments. And at no point in this life on earth have I talked about the size of Philippe's noggin (which, contrary to popular opinion is no larger than average, we've measured and compared!).

Tuesday, July 08, 2008

Charlotte the Sand Crab

Charlotte spends about 8 months a year bundled up in a ski parka, boots, hats, mittens, etc. She seeks out snow to throw herslef into and make snow angels. So, what's this snow bunny going to do while at Virginia Beach?

She makes sand angels, of course!

Friday, June 27, 2008

Thinking of Truncus Arteriosus and Other Heart Babies Today

Our journey began, as you know, in January 2005 when we learned that our unborn baby, then named "Sprout," had a rare heart condition called Truncus Arteriosus. We tried finding information and support on the internet and simply came up empty-handed. Even the national organization Mended Little Hearts didn't yet have a Chicago chapter.

So, I started the blog. I wanted to share our experience, which I had chronicled for months in emails, with any parent who might benefit from it. I wanted to write a memoir, Charlotte's memoir. And, yes, I hoped that maybe a publisher might find me.

As Charlotte's heart healed beautifully and without complication, her journey quickly became one through the discomfort of reflux and feeding issues, with a minor detour to plagiocephaly (remember the helmet photos?!).

And now, if you read the comments, you'll find that parents of Truncus Arteriosus babies have found us. And one Truncus Arteriosus "baby" herself. I'd like to introduce you to them.

Jessica is 21-years old and lives in Michigan. Today, as I write this, she is having her third TA repair. I'm in awe of her, actually. We have been told that by 21, Charlotte may have had 4 surgeries. Jessica's valve and conduit have lasted for 18 years! As she waited for her pre-surgery exam results, Jessica wrote me a beautiful email about the things she was scared about, things Charlotte should know before her next surgery when she'll be old enough to understand. And the things she's looking forward to. Jessica's poise as she awaited surgery moved me--she was thinking about being nude and exposed, with all her private bubbles out as she said. She's done a lot of research, so she was also thinking about all the tubes and wires that will greet her when the anesthesia wears off tonight.

As we light our Shabbat candles tonight, we'll be thinking of Jessica and wishing her quick and peaceful healing. When she's well enough, Charlotte is going to visit her in person so they can compare scars.

Caden's Mommy Ashlea found my blog today. I've just spent Charlotte's naptime reading Caden's story and marveling at Ashlea's profound prose. Caden's 18 months have been one mircale after another. You can read his story on his blog. I recommend you start with Ashlea's essay, Caden Konecny: Caden's Feet. I wish I'd written it.

And finally, but not least, is Josh P., Francie's son. Josh is not a TA baby; he has complex congentinal heart disease and recently had a Fontan procedure. We're hoping that he is healing well and that his parents and little brother are doing well, too.

Ashlea has created a list of links to other TA babies. Please visit them.

And keep Josh and Jessica in your prayers.

Wednesday, June 18, 2008

Hurray for Underpants!

I won't bore you with potty training details. I think most of my readers have "been there, done that." I'll just say this--we tried to avoid Pull Ups and had nearly two full days of disaster over Memorial Day. So, we caved and went with Pull Ups. Charlotte got the knack of it pretty quickly and her camp counselor said it was okay to send her to camp, and even pre-school, in Pull Ups.

Then Janet, day care provider extraordinaire, asked me to send Charlotte to her with underpants because, and we all agree, Pull Ups are really, really hard for kids to pull up and down themselves. They get even more difficult to maneuver as the weather gets warm.

So, always one to take Janet's advice and her unsolicited help, I let Charlotte pick out a pair of panties (Elmo, of course). She did great. Today she was at home with me and we had day #2 of underpants success.

Under that dress is an Elmo potty seat. Really.

As Elmo and Prairie Dawn say in Charlotte's favorite video, Elmo Potty Time, "Hurray for Underpants"!!

What is Charlotte reading, you ask? Why, her favorite "reading room" book, Feed Matisse's Fish. She loves the cadence of it, "Tick Tock, it's x o'clock, time to xyz. Do this do that, what a busy day." She knows it by heart, of course. The most fun is when she turns her own day into the book "Tick Tock it's 12 o'clock, time to eat my lunch, climb the chair and click on in, what a busy day."

Thursday, June 05, 2008

Feeding Clinic Update

This entry really should be titled "The Best Day Ever." Why you ask?

Well, it has nothing to do with the 2 1/2 hour drive to Milwaukee or the nearly 3 1/2 hours it took us to get home.

Here are the basic stats of our visit.
Weight: 33.75 lbs (15.3 k)
Height: 40.5 inches (102.2 cms)
Yes, she is off the charts for height. In fact, she hits the charts at average for a child of 4 years and 3 months.

But, these stats are not the reason this was the best day ever. This is

"Bye bye, tummy tube."

Yes, in that little specimen cup, Charlotte is holding her MICKey button, the last one she had in her tummy. Right now she sports a piece of gauze over the stoma. The stoma (or hole) should close up within 2 weeks.

We've also stopped the Pepcid as Charlotte's reflux seems to be resolved. Further, we'll be dropping one can of Pediasure a day, substituting it with whole milk, with the goal of getting her to whole milk with no additives by the time she starts preschool in September.

We'll follow up with her surgeon in Chicago if the hole doesn't close itself. After that we'll go to Wisconsin in September to consult with Charlotte's dietitian, Sara. (Every toddler should have their own dietitian!). In December, we'll see the whole team.

As you might imagine (or not if you're my brother!), I really have no words for the emotions I'm feeling right now. The champagne is in the fridge. It's a good bottle, Veuve Cliquot, that Philippe's EVP gave him at holiday time. We were saving it for a special occasion and we can't think of anything more special than this.

The best day ever. Ever. Ever. Or, at least in the history of feeding Charlotte.

Thursday, May 22, 2008

She Eats & Eats!

Check this out--I think it speaks for itself. Good thing, too, because Charlotte left me rather speechless yesterday.

Friday, May 09, 2008

Three? Is she really three?

Photo by Susan who was paparazzi to the toddlers last week!

I've been trying to write a poem to Charlotte. It's a cute rhymey thing that would have made my Aunt Frannie proud. Well, not so much proud as inspired to finish it for me because she was good at this sort of poem.

So, I took a break and looked at my two previous birthday posts. In 2006, I ended my post like this:

You see, I started this blog as the tale of Charlotte's journey to being a
regular kid. Well, guess what? She is a regular kid. She's just a regular kid
with a tube in her belly. But that tube helps her be regular, helps her grow,
helps her be on the growth chart (finally), and helps her get the nutrition she
needs to develop normally. She's pulling up, starting to cruise, babbling silly
sounds. She likes to drink water from an open cup and eat salty, crunchy food
(no doubt that she's my kid!).She has this impish little grin that tells you
she's up to no good.

And so, I will begin there as well. At three, Charlotte is a regular kid with a tube in her belly. But the thing is, we haven't used the tube since December and we're really, really hopeful that the tube will be gone by her fourth birthday. She's currently in the 90th or 95th percentile for height/weight (about 33 lbs. and at least 40 inches). She still likes crunchy foods, but she has a true love of chocolate. She runs--all the time--and can finnally jump, too. She's still impish, but now she tests her limits. All the time.

Most of all, she makes me smile so much my cheeks hurt. And she makes my heart swell when she crawls into my lap and rest her head on my shoulder. For a kid who was born with a broken heart, she's sure been able to teach me a lot about what a heart is really for.

So here's the silly, unfinished poem:

So many things you’ve learned to do,
in the year since you turned two.
Talk in sentences, run and jump,
Eat without your feeding pump.

So many games you like to play,
You keep me giggling throughout the day.
Flap like a butterfly, hop like a bunny
Every day you’re a little more funny.

What a year since you’ve turned two
Daycare, music class, so much to do.
One thing missing, and it’s just great
A year with no surgery. Celebrate!

I simply cannot wait to see
what you’ll learn now that you’re three.

It's not the eloquent birthday letter I wrote last year, but certainly it is age appropriate, especially for a kid who still can't get enough of Iggy Peck, Architect or Bouncing Galloping Dancing ABCs. Not that I will ever be able to rhyme like my heroes Andrea Beaty or Charlotte Doyle.

And you know what? She ate her birthday cake!

Sunday, May 04, 2008

We Really Are Here

Charlotte is such a regular girl that I've had a hard time keeping up with her lately. In March we went to the Notebaert Nature Museum or, as Charlotte calls it "The Butterfly Museum," for a special fundraising event--a butterfly adoption. When we got there, she was given a live butterfly in a little box and she got to release it into the Butterfly Haven. She had so much fun that she brought her toy butterfly home in the little window box and is still keeping it there. We're going back for their next butterfly adoption in June. We can't wait!

She has discovered that S'bucks kids' hot cocoa. The second or third time we got it for her, she drank some and then asked for a sip of my water. So, I said, "Sure, hand me your cup." She did. It was EMPTY. She'd had it for about 2 minutes. I'll spare you the trip to the S'bucks website: 8 ounces of a kids' hot cocoa is 210 calories. She has at least one a weekend. Many times she asks for it.

Little Miss Charlotte is truly a sassy-frass. Some recent quips:

In the car, listening to her alltime favorite, "Mamma Mia" on the ABBA Gold album, I was la-la-ing along, not singing the words, just kind of singing scat.
Charlotte: "Come on. You know the words." I laugh.
Charlotte :"What's funny?"
Me: "You, sassing your mommy, that's funny."
Charlotte: "You're funny, Mommy, singing that song."

Last week, I told Charlotte that Karley wasn't coming on Friday and that we'd have a special "All Mommy and Charlotte Day."
Charlotte: "Charlotte's a little bit sad about that." (Yes, she still class herself "Charlotte." But, she does say "ch" sometimes.)

Me: "What are you sad about? Spending the day with Mommy? Or, missing Karley?"

Charlotte: "Missing Karley
She also asked Daddy to go away for a while one night so that she could keep playing with Karley.

So many other stories I should have told you as they happened. But, she's been such regular kid that she's had me quite exhausted at the end of the day!

Friday, March 21, 2008

A Year Ago Today

It is so hard to believe that a year ago we were sitting in the surgical waiting room as Charlotte had her second heart surgery. And then beginning our bedside blogging again.

Of course, she came through with flying colors and has, by all accounts, spent the past year become the most regular of kids. She is still my hero.

This is the perfect time to tell you about our new friend, Jessica, a 21-year old born with Truncus Arteriosus. She contacted us through the blog to let us know that like Charlotte she had had a surgery at birth (3 weeks old) and another at 3 years old. She is having her third surgery--18 years after the second one-- this summer. We are delighted to have a new, grown up friend for Charlotte; some one who can swap stories about what it means to be just a regular kid with a patched up heart. And, after all of the sad truncus stories we've read about, we're terribly emotional about having a positive example for our kiddo.

Thursday, March 20, 2008

One year ago...

I remember 3/20/2007.... All to well. Around this time, Ilene and I were sitting home, grateful and anxious. Grateful, because our wonderful surgeons (under the leadership of Dr. Carl Backer) had decided that performing Charlotte's surgery after being in the operating theater for 12 hours was not a great idea. Anxious, because Charlotte was going to have her conduit replaced the next day.

Of course, hindsight is 20/20. You all know the Poopsie's 2nd surgery went exceptionally well. More importantly, you all know that, one year later, Charlotte is just another amost 3-year old. (Not really, I think Charlotte is exceptional). Things have been going so well that Ilene had to remind me about 3/20/2007.

I am glad she did.
This is a very good night!
I hope you feel the same

Charlotte's "Diddy"

Reflux Chronicle: Feeding Team Check Up

Baking with Daddy while Mommy was in Philadelphia 2 weeks ago

Charlotte and I made the lovely drive to Milwaukee yesterday to visit with the Feeding Team at Children's Hospital of Wisconsin and see what they thought of Charlotte's progress during our trial of not using the g-tube.

Here's what I told them: Since January 4, Charlotte has had a cold (at least one), an ear infection, a-typical pneumonia (not confirmed by chest x-ray), a stomach flu, and roseola. She has gained (drum roll please) exactly the amount of weight they wanted her to gain. So, we've proven that she can get sick, lose appetite and weight, and get right back on track.

Official weight: 32 lbs.

Next steps: The tube will not out until we've seen this progress continue for 3 to 6 months. In the meantime, we will stop taking Charlotte's special food to daycare; so twice a week she will have typical toddler food with typical toddlers. The expectation is that she will either (a) eat it all because she's hungry, improving her chewing, attention span, and overall oral skills or (b) chew, horde, not eat a lot and then chow down at home, making up the calories. Either way it's a win for Charlotte and for me. For me because I don't have to rush around like crazy to get her of the door on Mondays and Thursdays.

Wednesday, February 27, 2008

Reflux Chronicle: Trialing No G-tube

Charlotte: Remember when Charlotte ate tomato soup and had a tomato beard?

Mommy: Yes, I do. I even took a picture.
Charlotte: Can I see it?

Charlotte: Ooooooooooo.....Charlotte had a beard just like Daddy.
(This conversation is repeated about four times a day)

People always ask me how Charlotte is eating. Simple answer: Very, very well. For Charlotte, that is.

For more detail I could tell you about the volumes she's eating, how she chews so slowly it makes us crazy, or I could list the g'zillion foods she'll eat these days. But I'd rather just share some recent food stories that will become family legend:

Philippe and I took Charlotte to S'bucks last week. At first she didn't want anything. When she saw my hot chocolate, she asked for her own. Of course, we got her one. About 3 minutes after I handed it to her, she asked me to take it and give her a glass of water. Much to my surprise, the hot chocolate cup was empty!! In case you're wondering, that was 8 ounces and approximately 200 calories in 3 minutes. Seriously.

Goldfish crackers: Charlotte asks for them as a snack before breakfast! Yesterday, she had some in the car, accompanied by a cup of water. She then told us that there were fishies swimming in her tummy. Usually, she said, fishies swim in water, but now they're swimming in Charlotte's tummy!

My friend Esther recently told me a very sweet story about her daughter Sarah sharing a chocolate-covered strawberry that she had made in pre-school. As Charlotte and I re-told the story, Charlotte decided to make chocolate-covered strawberries. How? She dumped her strawberries into her chocolate pudding and then scooped it all up together, creating a complex texture that she handled beautifully. In this way she ate about 1/8th of a cup of fresh fruit (grapes, berries, mangoes).

Yogurt-covered fruit: The next morning Charlotte did the same thing with her yogurt, this time finishing nearly a quarter of a cup of fruit by plopping it in her yogurt, bite-by-bite.

And, the pièce de résistance of all this dunking? Last night she had chocolate-covered peas!
Many thanks to Sarah and Esther for all that inspiration!

Tonight while reading Iggy Peck, Architect (no, I will never skip an opportunity to plug the book!), Charlotte pretended to eat the pancakes on the page where Iggy builds "the St. Louis arch out of pancakes and coconut pie." True story.

Friday, February 22, 2008

Cardiac Update

It's been a long time since we've had a real medical or heart update here at Charlotte's Journey Home. That, of course, is a very good thing.

Charlotte and I visited Dr. Young, Charlotte's cardiologist, today. It has been 6 months since our last check up. I'm thrilled that Charlotte is doing so well, but we do miss seeing our friend Dr. Young more often. She's been a constant since our pregnancy and is very much a leader of Team Charlotte.

Charlotte flew through her exam with flying colors. She had an EKG and an echocardiogram. She started crying when I pulled the 10 EKG stickers off of her and cried on and off through the entire 45 minutes of the echo. It was very stressful.
The bottom line is this: despite being hysterical during much of the tests, her heart looked just fine. Dr. Young gave me all of the technical information about blood flow velocity and distribution--I used to understand it, write it down, and note progress. Today I nodded, noted that it was all good, and moved on. You see, while it all started with her heart, the reflux and eating issues have become so much more a part of our daily existence.

Anyway, Dr. Young originally said she didn't have to see Charlotte for a year, then nine months, then finally we decided six months. You see, we decided we couldn't wait nine months to see each other!

Then we came home and "got fancy." One of Charlotte's new best books is Fancy Nancy!

Wednesday, February 13, 2008

Tuesday, February 12, 2008

Reflux Chronicle: Another Hurdle Cleared

Charlotte had a terrible stomach bug this weekend. I'll spare you the details and say only that it came on quite suddenly and only lasted for 12 hours. By Sunday morning she was feeling well enough to grab a banana out of my friend Jackie's hand and eat about 2 inches of it. Today she ate nearly 600 calories of solid food and drank all of her Pediasure.

We had our follow up appointment with Dr. Newport today, checking in on weight to make sure that Charlotte had bounced back from last month's atypical pneumonia.

Charlotte weighed in at 31.5 lbs or 14.2 kilos. She's down only about .25 lbs. Since we weighed her today in only a diaper and we then realized that last time we weighed her fully clothed, and since she just had a tummy bug, Dr. Newport was not worried at all.

There is nothing worse than seeing your normally happy, bouncy toddler simply sit on the floor and stare into space like Charlotte did on Saturday afternoon. But, if she had to be sick, I'm grateful that we could learn from it how well she's doing without her tube!

Wednesday, January 30, 2008

Charlotte Reads: Bouncing, Dancing, Galloping ABC

Click on the title of this post to hear Charlotte reading one of our favorite ABC books.

We originally picked up The Bouncing Dancing Galloping ABC at the library for one reason--the author's name is Charlotte Doyle. For a long time, Charlotte referred to it as the Charlotte book.

Now she knows it by heart. Occasionally during the day she'll refer to it by acting it out. For instance: Charlotte will spin, get dizzy, and fall down, declaring, "Charlotte dropped herself." Why? Because "D is for dancing and dizzy and drop," of course.

I like this book for its original take on the alphabet. This alphabet is packed with action, with all the letters illustrated by verbs. The rhyme is light-handed, but catchy enough to remember. We can recite this alphabet all day long. (And, yeah, we do!). Julia Gorton's illustrations are colorful, playful, and simply full.

This book truly celebrates the alphabet. What a great way to start reading!

Reflux Chronicle: Passing the First Hurdle

Look at me! I can walk in Mommy's boots! (Picture by Karley B.)

We are nearing the one-month mark of our g-tube free trial. For the first 20+ days, Charlotte met all of her benchmarks, consistently averaging enough calories (combined fluid and solids) not need the tube.

Additionally, she has begun to run to the table at mealtime, ask if she can carry things to the table, and feed herself the first several bites if she's really hungry. Part of this behavior is evolutionary (it was beginning at the end of last year).

Partly, I attribute it to another milestone in Charlotte's life: she started daycare on January 7. Two days a week, while I teach, she is the warm, loving environment of a home daycare provider in my neighborhood. Janet and Ramie, her assistant, take care of 7 to 10 children (depends on the day), all under 3 years old. Most of the children seem to be within 6 months of Charlotte. So, she has some peer behavior modeling, different adults working with her, and a real sense of achievement. We LOVE daycare! (More on that in a few days.)

The first hurdle: As we got to week three of our tube-free trial, Charlotte came down with a cold which then turned into a cough. Her pediatrician diagnosed her with a-typical pneumonia and put her on z-pac antibiotics. Not surprisingly, Charlotte was pretty disinterested in food for about a week. Even the usual lure of chicken soup "with letters in it" didn't perk her up. We didn't force it, let her eat what she would, and tried to pack high calories into her low volume.

This is the test--can she bounce back after an illness, eating enough food and ending the two months with the appropriate weight gain. (In other words, if she loses weight during an illness, does she gain it back as effectively as "regular" kids?)

Within 3 days of antibiotics she was eating eagerly again, though her liquid volume is still down a bit.

And, according to our bathroom scale, she didn't lose an ounce! We have an "official" weight check with the pediatricianon 2/12.

Friday, January 25, 2008

My Honeys

I've been terrible about updating the blog. I will get to a full update this weekend to let you all know how our no-tube trial is going. In the meantime, check out my "Big and Little Geyskens." Ain't they just too cute?

Tuesday, January 08, 2008

Reflux Chronicle: Trialing No G-tube

Charlotte will tell you that the most memorable part of her visit to the CHOW feeding clinic was that "Dr. Julie changed 'Harlotte's tubey." That's true. Our RN, Julie, did change Charlotte's MICKely button since it hadn't been changed since April.

And for Charlotte, that probably was the highlight. She cried a little, but was mostly very brave.

But what does a 2-year-old really know?

The real excitement of our visit was this: We were given the green light to go for two months with no g-tube usage. In other words, what Charlotte drinks, she drinks. If she doesn't make a full 200 mls. at a meal, we don't "top her off" with the tummy tube.

Given that prior to our visit Charlotte had gone for as many as 9 days without needing the tube, I went to Milwaukee ready to lobby for a trial. When the team offered it to me before I could suggest it, I was over the moon.

We're also supposed to start offering mashed foods in addition to pureed to begin to transition her to eating regular solid food.

So, how is she doing? Since Friday she has drunk all of her "required" milk (600 mls.) and on at least one day she has drunk even more. Yesterday she got to 640 mls. She's eating just beautifully, though I think she's bored with her puree repertoire. Mashed foods are more of a challenge, though, because she loses focus quickly.
Sometimes it is hard to remember how far we've come. Here's what I wrote on January 8, 2006:
Charlotte continues, seemingly, to lose ground on the eating front. She took only 1-2 ounces from each of 3 6-ounce bottles today. Just a few weeks ago she was finishing at least one bottle a day and taking 4 to 5 ounces from the others. Since yesterday she's been refusing or gagging on her solid food, too.
I feared that she would be come 100% tube-dependent.
Two years later, I'm sincerely hopeful that we'll be celebrating her birthday with a bandaid on the soon-to-be former stoma of her g-tube. Of course, I know she can go backwards as quickly as she has jumped ahead, but my fingers (and toes and ears) are crossed that she'll be bikini-ready by summertime!
p.s. The other terrific highlight about our trip was that we had lunch with a friend of mine from my Discover Card days who is now working at Harley Davidson. Col, it was so great to see you!

Tuesday, January 01, 2008

Happy New Year!

Last January I wrote that Charlotte's resolutions for 2007 were: "Simply to fly through her next surgery with the same panache and resilience she brings to everything else. To turn two. To learn to say her name. To play in the ocean. And to continue to grow from strength to strength."

To say she accomplished all she set out to do would hardly do justice to our year. And, since she still can't (won't?) say her name, it wouldn't be entirely true. So I'll start with a picture from last January.
Here she is last month.
In 2007:

  • Charlotte had her second open heart surgery. She was home from the hospital in 5 days. Her scar is barely visible.

  • She reached the amazing height of 38.75 inches (4 inches since last January)

  • She weights 31.2 lbs. (Just about 6 lbs. since last January or .5 lbs per month, exactly what the doctors expect from her.)

  • Her speech and vocabulary improve and grow at such a rate that we laugh about our worries (in Fall 2006) that she had a slight speech delay.

  • We no longer count days without vomit. Vomiting is a rarity, not a regularity.

  • Charlotte is taking nearly 100% of her Pediasure by mouth. Last January I was giddy about 50%. She also eats between 400 to 600 calories of solid food daily.

  • She sings in French. Gorgeously.

  • She still loves Bubba, loves to push me around the house and place me where she wants me, and sings, making up her own melodies and words as she goes.

  • She has taught herself the alphabet and is now figuring out basic reading skills.
    She recognizes all her numbers.

  • She loves books (but you knew that).
As for the food front, stay tuned for another blog entry shortly.
Like last year, Charlotte and we would like to honor the extended Team Charlotte who helped us reach this day with grace and some bit of sanity:
  • Dr. Carl Backker, cardiac-thoracic surgeon. His smile after Charlotte's surgery said it all.

  • Laura Robson, Sara Karp and Cheryl Mercado--respectively Charlotte's speech, physical and occupational therapists

  • Dr. Luciana Young, cardiologist extraordinaire

  • The Feeding Team at Children's Hospital of Wisconsin

  • All of our wonderful friends who never think of Charlotte as anything other than a regular kid

  • Lakeview Pediatrics, all the doctors and staff, who answer our questions and assure us that Charlotte is as extraordinary as we think she is

  • Our families, especially our nieces who treat Charlotte like one of the girls, even if she is 10 years younger than they are

  • Tammy, pediatric optician, who makes sure that Charlotte has the perfect glasses, in terms of fit, function, and fashion

  • Dr. Charlie, Charlotte's dentist

  • Francie Paul, a fellow "heart mom," the founder of the Saving Tiny Hearts Society, and the best friend I've never met
If I've left anyone out, please know that we are ever-grateful for all of your kind thoughts, your emails, your comments on the blog. We never take for granted the blessings we find in the love and support of our family and friends. And we are always moved when strangers find the site and post their well-wishes.

In summing up 2006, I wrote,
It was a rough year. In many ways, it was harder and longer than 2005. Charlotte
lost her only grandfather before he had a chance to know her or she him. There
were definitely days when I didn't know how I'd make it until Charlotte's
bedtime and nights when I thought that if I had to clean up one more vomit, I'd
lose my mind.
I can honestly say that 2007 flew by. Charlotte brings a smile to my face on even the most trying days. And most of the time, she is not the reason the day was difficult. We still miss our dads, but are glad that Charlotte spent time with both of her grandmothers this year. (Just this morning she said randomly, "Charlotte has two grandmas, Nenenne and Bamma.") 2007 was truly a year of triumphs.

As for me, I never did manage arm balances and am still looking for balance in my life. I did, however, easily and successfully reenter a career I left nearly a decade ago. I'm teaching again. I have a book chapter coming out this year and a conference paper to deliver in March. I've been asked to help select films for the Chicago Latino Film Festival. And I'm one-third finished with my copy editing certificate. It's been a full year. For 2008, I'm going to continue working on balance. Maybe the arm balances will follow.

Charlotte's resolutions for 2008, you ask? To get rid of the g-tube. To transition nicely to daycare and then, in the fall, to preschool. To get potty trained (Okay, that's mine, not hers. She could care less!). To learn to count. To learn to pronounce her name properly. To turn three. To play in the ocean, again. And, as always, to continue to grow from strength to strength.