Charlotte's Journey Home

Happy New Year!

2012-01-04T21:33:00.009-06:00

It's been a few years since I've done a New Year's post. I think I finally relegated all the "year-end" review to Charlotte's birthday post. After I took Charlotte to school yesterday, I began to reflect on all that she has done and how she has grown since last January. 2011 was an extraordinary calendar year for Charlotte, so I thought it worth recapping here (especially because I was a neglectful blogger in 2011!).

On January 3, 2011, Charlotte started a new school. Uprooted from the only home she'd ever known, far from the friends and school she'd grown to love, she fearlessly walked into a classroom in Arlington, MA with a huge grin on her face. She never once complained, though a few times she did tell us how much she missed Chicago. After a few days she told us that her new school was a lot like her old one. The International School of Boston did have a kindergarten curriculum nearly identical to the Lycée Français. Charlotte observed that the work was the same, "but the kids are different, my teacher has brown hair and her assistant is a man." And, just like that, she was right at home.

In February, Charlotte skied for the first time. Thanks to the generosity of our friends Deb and Seth, we enjoyed a weekend in Lenox, about 2 hours away. Charlotte definitely got the bug. If I had it too, we might be like a lot of ISB families and have her enrolled in a ski program for the winter. But, no...

In April, Charlotte went to her first Red Sox game. Thanks to our pal Pam, we have about 100 photos of this momentous occasion.

She is now a proud member of Red Sox Nation and a huge fan. If it's baseball, she's in. We also went to our first Pawtucket Sox game (the quite local farm team). At $5 a ticket in a stadium so small you can hear the players feet hit the dirt, it's worth the drive and I imagine we'll be there often this season. I can think of no better "classroom" for all of us with regards the finer points of the game. We'll rely on Hal, Brandi and my friend Pam to coach on home team specifics back in Beantown.

In July we moved again, this time to Arlington to be closer to school. Charlotte left for camp from Brookline and returned to Arlington. She thought it all a big adventure, especially because Aunt Bobbie picked her up from the bus after camp, made french toast for dinner, and let her watch television while she ate. She's still talking about it! In Arlington, Charlotte became fast friends with the children on our block, quickly learned to love the park and pond down the street, and got back into the groove of riding our bike to school.

In August, Charlotte visited Nenenne in Belgium. Visiting Nenenne is a big deal because Charlotte only gets to see Philippe's mother (and sister and aunts and uncle) once a year. This year it was an even bigger deal. Why? Because my mother joined us and Charlotte's two grandmothers met for the first time.

We may go to Belgium once a year, but this was a once in a lifetime trip.

In September, Charlotte joined the big kids on the Cambridge campus of the International School of Boston, proudly beginning first grade. She literally ran into the first day of school. I'm thrilled to say that her enthusiasm has not waned. She springs out of the car each morning and in the afternoon tells me that she had a "really, really great day." She's learning so much and growing in ways that astound me.

In April, November, and December, Charlotte spent some time in New York City. She has walked from Penn Station to 57th St at 6th Avenue (by way of the NY Public Library) and from Grand Central Station to Little Italy (also by way of the Library). Like us, she loves the Big Apple. Especially if it includes a ride on the carousel in Bryant Park and a visit to the children's reading room at, you guessed it, the Library. She has met high school and college friends that I don't see often enough and she loves the American Museum of Natural History.

Charlotte also went to her first plays this year starting with The Lion King (okay, that was December 2010 in Chicago), several puppet shows at the Puppet Theater in Brookline, Peter Pan 360, Cirque de Soleil, and the Big Apple Circus. And she loved it all.

When I have more time, I'll tell you about the books we've read. For now, just know that there a certain boy wizard; four children and a godly Lion; Ramona; Ivy and Bean; and all of L. Frank Baum's menagerie are all among her favorite people.

Finally, last January, Charlotte's English teacher, Jeanie Miller, asked the kids to write about their new year's resolutions. Charlotte had one: to learn to swim. She's been working really hard to learn. She finally puts her head all the way under water and can do some limited doggie paddling. She'll be back in class at the Boys and Girls Club of Arlington at the end of this month and we hope to see a lot of improvement.

Her big goal for this year is to learn to ride a bicycle without training wheels. And this morning she told me that she also wants to be a better listener and control her emotions better when she's tired. Don't we all?!

Team Charlotte didn't have much to do this year in terms of Charlotte's health. But we did add to the roster. To our emeritus team in Chicago, I say, as always, thanks.

And to Drs. Katie Mitchel and Dan Slater (my high school classmate), our new pediatricians; Dr. Lucy Arnold, our new cardiologist; Dr. M. Kazlas (opthomologist); and Dr. Katerina Rafa (dentist) as well as Isabelle, Aileen, Sophie and Leigh, Ms. Roselini, Ms. Hammond, Mohamed, and Karine, Charlotte's teachers , I say Welcome and Bienvenue, Thanks so much and Merci.

(I'm skipping the full honor roll this year, but you all know who you are and how much we love you!)

Give Kids a Hand

2011-12-28T08:17:00.006-06:00

For nearly 130 years, Children's Memorial Hospital has provided brilliant pediatric care to the children of Chicago, Illinois, and the world. A bit of history from the hospital website:

Children's Memorial was founded in 1882 by Julia Foster Porter near the site of the present hospital in an eight-room cottage. Mrs. Porter established the hospital in memory of her 13-year-old son, Maurice, who died of acute rheumatism. Children's Memorial was the first hospital in Chicago dedicated solely to the care of children, at a time when the field of pediatric medicine did not even exist.

The hospital will celebrate its 130th anniversary by opening a state-of-the-art facility in the Streeterville neighborhood of Chicago. The adjacency of the Prentice Women's Hospital will mean that women like me will not need to be separated from their sick children. Instead of a three-mile distance that I was unable to cross while I convalesced from a c-section, I would be able to visit my infant in the PICU in a wheelchair rolled across a bridge connecting the two hospitals.

An even greater impact, especially for children like Charlotte, will be the ease of collaboration between pediatric and adult specialists at Children's and Northwestern Memorial Hospital. These collaborations occur today, of course. But, now, researchers and physicians will be on the same campus, facilitating even greater and faster collaborations.

As I've heard Pat Magoon, Children's visionary CEO, say, we are in an age of beautiful problems--children with heart defects, cystic fibrosis, spina bifida, and other historically mortal health problems are living into adulthood. But, they are still treated by pediatric specialists since adult doctors have never dealt with their problems. (We saw a 30-something-year old in the PICU for a heart surgery in 2005.) The new Lurie Children's Hospital will begin to bridge that gap.

One of my colleagues on the Children's Service Board, Holly Duran, has said for years that Children's offers 5-star healthcare in a 2-star building in Lincoln Park. The new hospital will put children, doctors, nurses, and other healthcare workers in the building they deserve. It will allow for better care, better recruiting of top doctors, and better access for all children.

Children's Memorial may be located in Chicago. But, it is a world-class medical institution that treats children from all over. In 2011, the hospital treated more than 148,000 children representing every state in the nation and 33 countries. The Lurie Children's Hospital will have more beds and be able to treat even more children.

As this season of joy, generosity, and cheer draws to an end, I would like to ask you, the followers of Charlotte's Journey Home, to join us as we continue to help make the Ann and Robert H. Lurie Children's Hospital of Chicago a reality. We hope to raise at least $1,000 in the name of Team Charlotte and earn her name on a tile mosaic in the hospital lobby. No amount is too small, and of course, no amount is too large. Follow this link (and make sure you land on a page that says "Team Charlotte" at the top).

Alternatively, follow this link and choose "Support a Fundraiser" in the left-hand nav. Then choose the radio button for "Search for a Team" and type in Team Charlotte. Click on the link for the team and choose "Support Team Charlotte" from the right-hand nav.

From our very grateful family to yours, best wishes for a healthy 2012.

Cradles to Crayons

2011-12-26T21:41:00.011-06:00

After shopping for disadvantaged children for two hours, Charlotte poses for a photo.

In this wonderful season of getting, we like to take a moment to give. Last week, on the day of Erev Hanukah, Charlotte and I took a huge box of her outgrown clothing, toys, and books to Cradles to Crayons, my current favorite Boston-area philanthropy. Cradles to Crayons has an extraordinary vision:

To ensure that "one day every child will have the essentials they need...to feel safe, warm, ready to learn and valued. Through the Giving Factory, we provide those essentials, as donated clothes, shoes, books and school supplies to homeless and low-income children. We also offer meaningful volunteer opportunities to hundreds of corporations and thousands of individuals and families each year."

In some ways, it's not such a big deal to donate used items. We do it whenever Charlotte outgrows clothing and toys. This year, Charlotte and I made a deal that she would purge at least 8 toys/books prior to Hanukah as she was certain to receive at least eight new toys/books to replace them. We had fun cleaning her room.

Then we made a date at The Giving Factory. We started by dropping our box at the loading dock. After that, we met Tams, the family volunteer coordinator. She gave us a brief tour of the warehouse, showing us how toys, clothing, books, baby gear are all tested (battery-operated items still work; tires are good; puzzles have all pieces, etc.).

And, then the fun really began! We got a sheet of paper with a child's name, gender, age, and a list of needed items. With a shopping cart, we went up and down the aisles, gathering correctly-sized clothing, shoes, appropriate books and arts & crafts kits. As we completed each sheet, we went to the check-out table, filled a bag and handed it over to the clerk. We got a new sheet and began again.

We did this for two hours, filling bags for boys & girls, babies & toddlers. But..we couldn't fulfill every need--there were no size 4/5 coats for girls, no hats or gloves for babies ages 0 to 24 months, no shoes for boys size 7/8. We filled bags for at least a dozen children, whose names I swore I'd remember--Angel, Miguel, Catherine, Kevin, and more. Charlotte declared it the "best day of vacation" and asked when we could go back.

Cardiology Update

2011-12-20T21:17:00.006-06:00

First picture taken with my new camera. Thanks, Philippe!

Most of the time, Charlotte is just Charlotte--funny, sassy, smart, and sweet as honey. Most of the time, I see her scars as you see your child's freckle, or the scar from their skateboard crash. In other words, scars are just part of who she is. At bath time I see her big scar, however, and some part of my brain registers all that it means.

About once a year, we are reminded in full force of the meaning of all of her scars, what they have brought us, and what we (and she) will have to endure for the rest of her life.

That time came a few weeks ago when Charlotte had her cardiology check up with her new Boston cardiologist, Dr. Lucy Arnold. It was a bittersweet meeting--we LOVE Dr. Young and have been her patient (me, too) since 2005. Change doesn't come easy. But, Dr. Arnold was recommended by our pediatrician, Dr. Mitchell, and we quickly understood why.

That's Charlotte's heart on the screen. And, yes, there's Bubba, ever-present.

We had two appointments. At the first, Charlotte had her EKG and a physical exam. When Dr. Arnold entered the room, Charlotte was having a full out tantrum because she can't stand the EKG stickers. The stickers connect twelve leads to the machine which, in turn, creates an image of the electrical changes in her heart by measuring the electrical impulses in each heartbeat. The stickers are very sticky and taking them off has not, in the past, been easy. But, you can imagine that a hissy fit can affect the reading. The longer she fusses, the longer the test goes on. Dr. Arnold managed to calm her down very quickly. I got the sense, however, that Dr. Arnold might have thought Charlotte was spoiled or that I wasn't effective at handling her. While I liked her manner with Charlotte, I was worried about her impression of us.

Everything looked good upon the first exam so we schedule the follow up appointment with for an echo cardiogram. I spent about a month working with Charlotte to make sure that Dr. Arnold's second impression of her was better than the first. Charlotte walked in smiling, hopped up on the table, and cooperated gleefully, all the while chatting about her school day.

Dr. Arnold brought a student technician and narrated the entire 45 minute exam, talking about truncus arteriosus and Charlotte's particularities. She also answered Charlotte's questions, such as:
"Why does the image show blue and red?" The different colors indicate the direction in which the blood is flowing (not oxygenated/deoxygenated, as I had thought), so that the doctor can see that it is flowing where it should and when it should.
"What does a valve do?" It works like a door, opening and closing to let the blood in when it should come in.
Charlotte was calm and happy the whole time, only getting antsy in the last 5 minutes or so. And Dr. Arnold was terrific with her.

The hero of the day, however, was Maria, the technician. When the exam was over, Charlotte took a deep breath and started to cry and fuss about taking off the three stickers from the echo leads. I tried reasoning with her about how much less sticky they are than the EKG ones. We were about to leave it that they could soak off in the bath (really just a delay tactic as they don't soak as well as band aids). Maria walked over with the sonogram gel and said, "I have a trick for the stickers." As she explained her trick, she squirted some gel on and around the lead and it slipped right off. Charlotte was protesting, "No, I don't want to try that," but it was already done. So Charlotte let Maria take off the other two as well.

I think Charlotte (and hopefully me, too) made a much better second impression on Dr. Arnold. I know we were as happy, if not happier, the second visit, too.

Now, you're wondering, what about her heart? Well, rest assured if there were big news, I'd have led with that! From her initial impressions, Dr. Arnold sees slight stenosis in the pulmonary artery, but nothing that is affecting blood flow yet. Other than that, all the heart functions look healthy. We're still awaiting the "official" report, but it all looks normal (for Charlotte) for now.

Happy Thanksgiving

2011-11-24T08:45:00.003-06:00

I'm sitting in my brother's kitchen chatting with my niece while she makes apple pies for Thanksgiving dinner. She's a college junior. It seems like yesterday she was sitting on the puzzle pieces so I couldn't help her. Or asking me to swing her again and again. Or writing me the sweetest letters an aunt ever received. Now we're talking about poli sci classes and life after college. It's rather amazing.

Later today we're heading to visit my friend Debbie and then to my sister-in-law's sister's for the holiday. It's going to be a day filled with old friends (I've known Debbie since we were four), family, and a great deal be thankful for.

One of the things we're always thankful for is Charlotte's continuing good health. This year we're also grateful for her incredibly talented teachers who are making first grade a year of learning, discovery, and fun.

Wishing all of you a beautiful, love-filled holiday!

On that September Day...

2011-09-11T20:53:00.003-05:00

Alan Jackson, the country artist, has written a beautiful song entitled "Where Were You When the World Stopped Turning?" to commemorate all that we lost on 9/11. It brings tears to my eyes with its simplicity and honesty.

We all know where we were--I was on the Edens driving from Chicago to Buffalo Grove, listening to my friend Mary read the news on WXRT. When she and her morning deejay partner Lyn mentioned the first plane on the air, it was so unreal, "probably a single engine private plane" whose pilot hadn't had enough coffee and took a wrong turn. Philippe was in a hotel room in Minneapolis, watching the end of a movie on HBO. My brother was in Ohio, waiting for the plane he intended to catch to go home.

Within moments so much had changed--I pulled into a parking lot and my colleague Dawn yelled to me that a second plane had hit the second tower. As a former government employee, she immediately recognized what was going on and hurried me to a television. Philippe went to the hotel bar to get a coffee and couldn't figure out why everyone was staring at the television. My brother watched the second plane hit, left his gate, and managed to get a rental car to get home.

But, my childhood friend Jeffrey Gardner cannot tell us where he was or what he did when the plane hit the tower he worked in. All we know about that day is that he didn't make it out. Knowing Jeffrey, we can assume much more. If he wasn't killed on impact or severely injured, Jeffrey did all that he could to help others, either tending to the injured, trying to evacuate the building, or just leading folks in prayer.

I know this much: my generation lost its innocence on 9/11. A lot of extraordinary people were killed in the terrorist attacks and, subsequently, a lot of ordinary people chose to serve our country as we went to war. I lit a yarzheidt candle today for Jeffrey; for victims on the airplanes, the Twin Towers, and the Pentagon;, and for the members of our armed forces who have sacrificed in the past 10 years.

And I answered all of Charlotte's questions. She's not too young to know. It is weird to me that my students were children on 9/11, that a generation is growing up for whom 9/11 is truly history. I suppose it shouldn't be: Philippe and I ended the day at the movies, seeing The Debt, a film which deals with the aftermath of the Holocaust. WWII is, for my generation, truly history. So, 9/11 as history shouldn't surprise me. But, the fact of one cataclysmic day, a few short minutes, changing all we feel about our safety, security, and peacefulness seems so different.

On that September day, I was driving, enjoying the clear blue sky and the sound of my friend's laughter on the radio. On this September day, I took a 15 mile bike ride with my family (yes, Charlotte, too!), went to a picnic, made a new acquaintance, and spent good time with my husband. And not for one minute did I forget that Jeffrey Gardner was unable to do the same. I dedicate this day to Jeffrey, for whom "good day was as bad as it gets." He was, simply put, a joyous human and a kind soul. I'm proud that for his short time on earth I was able to call him "friend."

For my usual Jeffrey post, click here.

Give your kids an extra hug tonight.

Six Years in the Making

2011-09-01T19:59:00.004-05:00

Did anyone else notice that this was the shortest summer on record? School let out yesterday, it seems. And today, after much excited anticipation, Charlotte started first grade. It feels like just yesterday that I dropped her at daycare for the first time. She said to me that she was amazed at how quickly she seemed to get to first grade. I responded, "Actually, sweetie, it's taken you a good six years to get here." I don't think she quite understood me, but as we drove to meet her teacher yesterday, I had a virtual newsreel of highlights from Charlotte's life playing in my head. Six years--six long years and yet six incredibly short years.

Charlotte has been looking forward to this day since about a month before Kindergarten ended. In fact, I think her Kindergarten diploma (Yes, she got one, but the "ceremony" was limited to the school director, her teachers, and the class.) mostly impressed her because it meant she was a first grader.

All summer we've heard about how "first graders do this" and "first graders do that". First graders, for instance, sit in an assigned chair at school; help their mommies choose vegetables at the grocery store; cross the street walking next to mommy, but don't have to hold hands; and first graders have homework (very exciting). In short, first graders are big kids.

When we asked Charlotte why she was so excited about first grade she said, "Because I'll get to do more math and science." I think her teacher will have her hands full with this one!

We walked Charlotte into the schoolyard and chatted with other parents while the kids climbed and played. It was cheerful chaos as the whole lower school (1 through 5) gathered before the bell.

We were a bit concerned because Charlotte was not put in a class with any of her closest friends and she's in the biggest class. A friend said, "Show her the list and see what her reaction is. Maybe she'll teach you something." Teach she did--while she wanted to be with Sarah and Henry, she glanced at the list, asked about her teacher, and talked about playing with her friends on the playground. She's happy to have several children from last year in her class, one of whom was at her birthday (the measure of kindergarten friendship, right?).

As parents greeted each other, Charlotte had "smile conversations" with her friends, but explored the playground on her own. I tried not to worry about her social integration--her buddies clearly delighted in seeing her, and she them, so I think she just needed to run her nerves off.

The bell rang. The children lined up with their classes, hoisted their backpacks onto their backs, and, first graders in the lead, filed into school. Just after I took this picture, Charlotte turned and blew me the biggest kiss ever, movie star-style.

About four and a half years ago, Charlotte started to crawl. She got on her hands and knees, gave me one of her angelic mischievous smiles, and turned to scoot away as quickly as she could. I realized in that moment that my goal as a parent is to raise my child to be able to walk away from me with confidence and clarity, but to always know I'm there and to (hopefully) always want to come back. That movie star air kiss made me feel like I just might be getting it right (so far).

How did it get to be time for first grade?

2011-05-25T13:02:00.002-05:00

Last night I attended an information session for first grade at the International School of Boston. The director of pre-school ended the session by joking (sort of) that he knew that the kindergartners were ready for first grade, but that he and the teachers had wanted to help the parents be ready.

Truthfully, we're not ready. We look at Charlotte and she's still our tiny little baby. Okay, she reads, writes, tells (bad) jokes, plays complex board games, and is a charming companion. But she's our baby.

Charlotte, however, is ready. How do I know? This morning she told me that she had a field trip with her class today to a mill. They've been studying wheat, so going to see it ground into flour would be a good next step, right?

I said, "No, I don't think so, sweetie. I don't remember an email."

She didn't argue or anything. "Okay."

We headed to school where I ran into one our class mothers. She said, "I'm going with the children today." I said, "Where? Is there a field trip?" "Yes," she said, "to the mill."

Charlotte's grin required me to put on my sunglasses.

I quickly remembered the email we received earlier in the month about field trips. I said to Charlotte, "Sweetie, at the mill there are no bathrooms. You'll have to squat in the woods."

She said, "I know, Mommy. Isabelle told us."

"Oh, okay. Oh no. I didn't pack you a lunch." [Charlotte has hot lunch at school on Wednesdays.]

"Mommy, I have hot lunch today. Isabelle will have my lunch. She told us that she'd have lunches for anyone who gets hot lunch today."

Apparently, Charlotte is an excellent listener at school And though I hadn't put the field trip on the calendar and didn't receive the reminder email from school, she was well-prepared.

If only Charlotte had told me last night, I wouldn't have felt like such a dope!

She's totally ready for first grade. I, however, may need to repeat kindergarten!

Heart-a-versary

2011-05-16T08:27:00.007-05:00

Charlotte sometime before her surgery. (May, 2005)

Last Monday we celebrated Charlotte's sixth birthday. Of course, she "celebrated" with her second bout of strep throat in 3 weeks (who knew I was supposed to change her toothbrush?! We're still P.I.T.s*). Just as I finished icing the cake for school, I got a call to pick her up because of a high fever. Not to worry, she had cake that night at home, cupcakes at school on Thursday, and yesterday she had a magnificent puppet party.

Today, we pause to celebrate--a bit more somberly perhaps, but with equal amounts of joy--Charlotte's heart-a-versary.

Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.

We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed that day.

Charlotte immediately post-surgery (May 16, 2005). So little amidst all those tubes, medicines, and equipment.

So today, as every May 16, we think of those wonderful doctors, as well as Charlotte's formidable cardiologist Luciana Young; her lead nurses Nancy Smith and Samantha McCoy; and all the staff and nursers who gave our daughter back to us.

She may have been born on May 9, but it was on May 16 that Charlotte was given a fighting chance at life. We will be forever deeply grateful to all of you who helped make that happened and who supported us through the long days and nights that followed.

Charlotte last Monday. Feeling terrible with strep and exhausted after a 2-hour doctor appointment, but ready for her birthday cake.

Now She Is Six

2011-05-09T22:23:00.011-05:00

Every year I write Charlotte a birthday letter. This year, I’m borrowing a bit from a poem I’d been waiting for six years to read to Charlotte. I read it last night on “birthday eve.” She squealed in delight. Forgive the slightly “holiday card” beginning, please.

Dear Charlotte,

When you were one, you had just begun.

And what a beginning it was. After you blew out you first birthday candle, Daddy and I went out to dinner to celebrate and to breathe a deep sigh of relief. Your first year was full of challenges, of the regular sort and of the not-so-regular medical sort. You delighted us daily even if your medical issues concerned and challenged us. On the day you were born, a first birthday wasn’t something we were sure we should think about. I still think it’s one of your finest accomplishments!

When you were two, you were nearly new.

Celebrating two with Sheri (Sheddy).

Four months after a second heart surgery, your second birthday found you growing at incredible rates, eating (!), and teaching yourself the alphabet. You loved having a birthday, gleefully unwrapping presents even if you still weren’t interested in the cupcake. I can still see your outfit, your glee at music class when everyone sang to you in French, the playground, and your beautiful curly mop.

When you were three, you were hardly she.

I think Milne must have meant that a three-year old is still a newling. Our three-year old was SO you. Everything you were at three—silly, smart, sassy, sparkling—you still are three years later. You had your first real birthday party and you ate your cake. You wanted to be involved in every detail of planning it, including asking me to make a yellow cake with chocolate and pink icing.

But, I’ll agree with Milne that compared to now, you were hardly you. You were simply too little for your personality!

When you were four, you were so much more.

This may be my favorite picture ever!

Four was a hoot, to be honest. As one friend’s sister puts it, “four is the terrible twos plus vocabulary.” I’m glad to say our twos weren’t terrible. And four was two plus vocabulary. I didn’t blog much that year and it’s a shame. Just a list of the things you said and learned would have made for hysterical reading. You traveled to Paris and Boston and reveled in adventures you still talk about. You started talking about your birthday in December and never wavered—it had to be arts and crafts and the cupcakes had to be….yellow cake with chocolate icing. (Your cake on the actual day? Yellow, chocolate & pink icing.)

When you were five, you were just alive.

The past year has been an extraordinary year in the life of this parent, just watching you blossom. In junior kindergarten, you had a master teacher, Corinne, who recognized your talents and challenges. She kept you front and center to keep you focused, and she challenged you. You made incredible social strides—you had a few very close friends and were also a well-integrated part of the larger group. By the end of the year, any social problems that had concerned us at age 4 were totally gone.

Not only did you eat the cake, but you figured out that birthdays are really all about the cake (and the party). You also figured out that you could ask your baker for one thing on your birthday and another on the party day. We went with a chocolate fudge cake (from scratch) on the birthday, cupcakes for the party.

You started Occupational Therapy just before your fifth birthday. From May to December 2010 you thought you were just playing for an hour a week with Miss Jill. We watched you progress in your balance, physical risk-taking, and posture. And you loved going.

Summer brought your first big day camp experience. I worried that you wouldn’t want to get onto the bus the first day. Silly me. You nearly forgot to say goodbye to me. Fred’s Camp was an amazing experience—your only knew two girls in your group, but made friends quickly (starting, as usual, with a boy). You tried all kinds of new sports, got into the pool daily, and came home every day happy, filthy, and exhausted.

In September, kindergarten wasn’t the big transition is for many children since you knew the school. But, none of your three “best” friends were in your class, in fact none of the girls you knew well were in your class. I was worried. Needlessly, it seems. Within a week, you had figured out that you could play with Felix on the playground and you relaxed and made great new friends in your classroom. Your teachers were, again, extraordinary. Mrs. Lovito made English class the highlight of each day. Marie Gladys and Laurence helped you surprise us by encouraging your reading exploration in French.

It was beginning in December that you taught me all your lessons for the year. After your holiday show at school, the movers came and packed us up. Your last night in Chicago was your first sleep over, at Trudy’s house. Then we picked up and moved east.

The transition you hadn’t really had for kindergarten happened when you began at the École Internationale de Boston/International School of Boston. As you described the change, “It wasn’t all that different. My teacher has brown hair instead of yellow. My assistant teacher is a man, not a woman. And the children are different. Otherwise it’s the same.”

I think you make it sound easy, but I know it hasn’t been. In Chicago you knew everyone at school, had a few close friends but played with and were friends with everyone. Suddenly you knew no one, had no playdates, didn’t seem to quickly be on birthday party lists, and spent a lot of time with Mommy.

Your teachers and you said you integrated quickly into the class. Certainly, you fell into the academic routine quickly, thanks to your talented teachers Isabelle, Axel and Jeanne. It turns out that you returned to playing alone on the playground more often than not. Happily, most of the time, I think. You would play with another child if the teacher suggested it. A little girl named Natalie (from another class) befriended you. It took about three months before you started talking about your friends at school, consenting to playdates, and talking about who you’d invite to her birthday party. But, you never once complained.

I think having Jenna (our upstairs neighbor) close by for one-on-one time made the transition easier. And I’m grateful for the spontaneous knocks on the door this winter. I know Jenna made snow days more fun!

Through it all, you have never complained; (almost) always went to school with a skip and a smile; and tried hard not talk about how much you miss Chicago, the Lycée, your pretty green room, and your house. You are quick to answer the question, “What do you like best about Boston,” and you have become quite the Red Sox fan.

Your personality has been evident from your first 72 hours in the PICU—you observe the world around you, takes it in, and figure it out. You’re strong, resourceful, and smart. You’re sassy, silly, and sparkly (thanks Aunt Bobbie for the perfect birthday card; I’m totally stealing its description). You have always been all these things. But in the past six months you have begun to connect your personality to your world, live in that world socially and sensitively, and remind me always that kindness and a smile make everything better and easier.

Yesterday my friend Vanessa noted on her Facebook page that while she loved the gifts she got for Mother’s Day, the gift she gets every day is her daughter. I echo this—you are my (our) gift. You are my sunshine and my heart.

Now you are six, you're as clever as clever. I know you won’t be six forever and ever.

I will cherish every day that you are six, or as you put it this morning “the six-iest” [folks, I really don’t make this stuff up!]. As you enter your seventh year, I hope you’ll continue to be sensitive and sparkly, silly and kind. I look forward to watching you learn to swim, go to a new day camp, and (gasp) start first grade. I hope you’ll still find comfort snuggling up to read, ask me to push you higher on the swing, and dream up games for us to play. I know you’ll be as stupendously six as you have been fabulously five and I am looking forward to the ride.

May you grow from strength to strength.

Rumplestilskin

2011-03-06T11:52:00.003-06:00

Who knew that in addition to super-fresh seafood, easy access to mountains and the ocean, and proximity to my family, our move would bring us to "the heart of the most fertile puppetry-producing region of the country."?* And that proximity would make us neighbors to the best-kept secret in Boston, The Puppet Showcase Theatre?

Yesterday we took Charlotte to her first professional (i.e., non-birthday party) puppet show, in a theatre dedicated to nothing but puppets. We had no idea what to expect beyond a puppet-rendition of Rumplestilskin. We were all delighted by Dream Tale Puppets' production of the tale, performed by two puppeteers and five tabletop puppets. A perfect 60-minutes long, the show captured Charlotte's complete attention. She was delighted by the puppets and the story (a girl becomes a queen, just her speed). We thought the staging was terrific and the story well-told. Lots of good giggling was done by all.

Stay tuned to learn about how this performance inspired Charlotte's activities for the rest of the day and this morning.

Congenital Heart Defect Awareness Month

2011-03-02T20:28:00.006-06:00

February was congenital heart defect (CHD) awareness month. Awareness campaigns, statistics, and information were everywhere. So, I decided not to write about heart defects in February.

Okay, I didn't decide so much as not get around to it in time. But, never mind about that because in our little world, every day is CHD awareness day. I thought choosing a random day to write about it would have a bit more impact, make more sense in relating how CHD affects our lives.

We talk often about Charlotte being a gift, her results from surgery being exceptional, and the blessings we've experienced. That's not just our perception. It's the cold, hard fact.

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. Truncus arteriosus is rare among these--latest CDC statistics, 0.72 live births in 10,000 have TA. That's around 300 children each year. Consider that Prentice, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of how few children are born with this defect.*

A recent-ish study demonstrated that truncus arteriosus is one of the most expensive hospitalizations of any defect. An average neonatal stay is $192,781. Average hospital stay is around 21 days.* (Recall that Charlotte's first stay was 49 days; she was above average even then!)

And, the final stat for tonight: 90% of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child's individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, "The ultrasound shows..." After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

You've read our numbers for the past five years. So, I'll end with our latest stats.

First, the one Charlotte would like reported--she lost ANOTHER tooth on Monday, bringing the grand total of lost tooth to five. Second, when we met Charlotte's new pediatrician yesterday, we found out her latest "key" stats: Charlotte is 47 1/2 " tall and weighs 46 pounds. She's tall for her age and thin. (Duh, her tights fall down all day.)

Charlotte's new pediatrician is in partnership with my high school friend who I have promised I will not again call "Danny" in the office. Old habits die hard! We loved meeting Dr. Mitchell. And we look forward to seeing if we agree with Dan that she is "the best doctor in the universe." So far, so good!

*Data from CDC.gov and NMH.org

The Blog is Back!

2011-02-24T16:51:00.004-06:00

I have been a remiss blogger. As my brother noted on Facebook, we've had a LOT going on--Philippe got a new job for which we've all moved to the greater Boston area. I'll be "back-blogging" about Charlotte's journey to her new home (and new school, new city, apartment-living, etc.), but for now, I wanted to share Charlotte's first day on the ski slopes, Butternut in the Berkshires, to be specific.

BEFORE:

So excited. Ready to rock the mountain!

Do you notice anything different about Charlotte? Yep, her disintegrating top left tooth has finally fallen out. And, even better, her top right tooth FELL out last Saturday night. She can fit her whole thumb in there!

DURING We started Charlotte with a private lesson today. She and her teacher, Amelia, had the coolest names on the mountain today.

AFTER

After an hour of skiing and some time walking around in those crazy heavy boots, Charlotte crashed on the way home.

Skiing, by the way, is a sport that Philippe has been concerned about in terms of Charlotte's heart. He's always wondered if it's okay for her to be in high altitudes and to move at the speeds that intermediate skiers employ. Her surgeon, Dr. Backer, told us that he skis with some of his patients in Colorado (I think), so not to worry. Our friend Jessica, also a truncus arteriosus patient, has told us that her body clearly tells her what it can and can't do. So far, all is good for Charlotte and skiing. Good thing, too. I think she caught the bug in a major way today.

She's SO ready for ski school on Saturday!

A Perfectly Innocent Question, or more ruminations of Charlotte as a "regular kid"

2010-08-16T13:00:00.006-05:00

Our annual Virginia Beach sandcrab picture. The scar pokes up about an inch or more above the suit.

Charlotte has a couple of bathing suits and sundresses that expose her heart surgery scar. She even has one tankini that shows off her heart scar as well as her g-tube stoma. Every now and then when she chooses one of these outfits (and these are her favorite bathing suits), I'll ask if she minds that the scar or scars show. Her standard response is, "Not at all." Just recently she has begun saying, "No, of course not. I love my scars."

Charlotte knows how she got her scars. She pours over her baby photo albums. She has asked me to explain her heart defect and how it was repaired (the book It's My Heart is an indispensable resource.) And, she was recently among the honored child-guests at the Saving Tiny Hearts Society gala. We've rehearsed what she might say if someone asked how she got the scar.

We both really thought that she was as comfortable as a five-year old might be with her body and its difference.

Until Saturday.

This weekend a lovely, charming, intelligent, and curious eight-year old friend asked Charlotte what her scar was. I didn't hear the exchange or how she phrased it, but I imagine it was innocent and nonjudgmental. Suddenly, Charlotte came running into the house, angry, telling me that she didn't want anyone to talk about it. She was stomping her feet, very insistent that she would not talk about it.

Philippe and I were stunned. I've asked a few times this summer if any of her camp friends asked about it and she said no. Turns out one friend asked and she refused to answer.

Later in the day, when Charlotte had calmed down and we were alone, I asked her why the question had upset her. It took her a few moments to articulate it, but she said, "Because I didn't want R to think I was still sick." And, I'm guessing, she didn't feel she could adequately explain that she isn't sick, that she is (as she so often says) "as healthy as she can be."

Philippe and I were both dumbstruck. I still don't know what to say.

Both R and Charlotte have probably forgotten about this conversation. I whispered to R that her dad could show her Charlotte's website and she could read the answers to her questions. She's an intelligent girl and meant well. She deserves an answer. Who knows? Charlotte's story might inspire some of her life choices.

While the kids have likely moved on, my heart breaks for Charlotte's broken heart and for her bruised spirit. This time the question was caring and considerate. Next time it might be cruel, teasing, or exclusionary. And, I have idea how to help her deal with this. She wants so much to be a regular kid. And in so many ways she is about as regular (and extraordinary) as a kid can get. But, no matter how regular she is, she'll always have a "zipper" down her chest and she'll always be a heart patient. Even if congenital heart defects are the number one birth defect, there ain't nothing regular about that.

OT/DT Odyessey: The Final Chapter, OT and beyond

2010-08-12T15:29:00.005-05:00

Charlotte posing in front of the new Ann and Robert H. Lurie Children's Hospital of Chicago. Construction is on schedule. At this critical juncture we still need funds--the building is up, but we need to complete the interior. Please click here to donate and be a Hero for Life. And check out the hand etched into the windows at about the 8th floor, screen left.

After nearly 8 months of research, evaluations, and hair pulling (mine, really), we were ready to find an Occupational Therapist. The evaluating practice was out of the question so I, once again, turned to Team Charlotte.

Since Amy Zier & Associates was not an option because of insurance and the recommended OT at Children's Memorial was on maternity leave (very inconvenient timing), I turned to Oaktree Developmental Center. Its lead OT, Kathleen Stanton, was recommended by Cheryl Mercado, the OT who evaluated Charlotte during her years in Early Intervention.

My first conversations with Kathleen were very calming--she is familiar with both therapies that had been recommended, was willing to set us up based on the BO&A evaluation, and clearly wasn't planning on jumping to conclusions about anything until she (or the assigned therapist) had met Charlotte. Charlotte was happy with any clinic we might find as long as there was a ball pit.

Finally, in early March we were matched with Sarah S., an OT fresh out of school with a wonderful way with children. Charlotte dove right in. Literally, she dove right into the ball pit. While it is clear to me that she still needs work with fine motor strength and skills, her willingness to try new physical challenges was already (in March) vastly different than it had been when we first begin this odyssey in June, 2009.

After 4 weeks, we could already see the difference in Charlotte's upper body strength and daredevilness. She looked forward to therapy as a big playdate with a new grown up friend.

Then...while on a brief vacation during our March break, we received a call from Kathleen to let us know that Sarah had had to suddenly resign. [Family reasons. Not mine to tell, but I will say that she is not only an amazing young OT, but that she is clearly a wonderful daughter and niece.] Because Oaktree is so small, Kathleen couldn't schedule Charlotte with an OT until she hired someone new.

Back to square one....this time I cast a broader net and did some of my own research, calling Team Charlotte to ask "Have you heard of this practice? That OT?'

I found a new practice and set up an appointment with an OT who sounded lovely on the phone. She could start nearly immediately, in early May, but would have to hand Charlotte to a co-worker for two months during the summer while she took a medical leave. Oh, and the facility had no ball pit. (I didn't tell Charlotte that.)

The morning before the appointment, I called Kathleen to see if, on the off chance, she'd hired anyone. She said, "I was about to call you. I can start you with my new OT on June 6," and proceeded to tell me all about Jill.

Philippe and I weighed the options:

A) Beginning quickly with a new OT, new facility with a break in continuity. Big bonus, lessening the weeks of no OT. Big minus, Charlotte would just get used to her new OT and then have a sub. Oh, and no ball pit.

B) Waiting about five weeks to return, but going back to a known facility (with a ball pit) and continuous service with the same OT.

We choice option B. The OT on whom I cancelled (I can't remember her name, but would dig through my notes if we need to go through this again) sent me a very supportive email saying that choosing the known facility and continuous OT would likely be less disruptive for Charlotte. She thought it made perfect sense, promised to shred all our intake documents, and told me to get in touch if I needed to.

So, Charlotte's been playing with Miss Jill at Oaktree Development Center every Monday since June 6. The changes in Charlotte are evident and exciting. She's working on balance, core strength (serious ab work, folks), fine motor strength, and complex task sequences. She starts and ends each session in the....ball pit! But, she's riding a zip line to jump/fall into it. She is so excited to go to OT, that she doesn't say goodbye when she runs into the room.

That, folks, is the end of the OT/DT Odyssey tale. It began with a surprising and shocking comment by an astute, sensitive teacher. Charlotte travelled through junior kindergarten with a master teacher who nurtured her and helped her blossom. We discovered her intellectual strengths, physical deficits, and potential challenges. Charlotte went to camp and became a sort of daredevil (more on that another time). And she goes to OT weekly to lessen (or at least learn to manage) the discrepancy between her fine motor skills and intellectual capabilities.

OT/DT Odyssey: Researching the Therapies

2010-08-06T14:39:00.003-05:00

Charlotte debuting as a special guest at the Saving tiny Hearts Society gala last month. Saving tiny Hearts was founded by a couple whose son has complex CHD and who recognized the need for research into the #1 birth defect in the U.S.

By the end of February we had ample evidence to know that Charlotte needs Occupational Therapy. Her “deficits” aren’t visible to the average observer, but they could impair her academic achievement later.

Finding a reputable OT practice that accepted our insurance was a bit more challenging. We had decided not to return to BO&A for a variety of reasons. Our next search was for a practice that would accept our insurance, offer Therapeutic Listening, and understand Floortime Therapy.

Loving art at the Museum of Contemporary Art in Chicago. Upon seeing this sculpture by Nathan Carter, inspired by Alexander Calder (one of my favorite sculptors), Charlotte squealed, "Wow." and began to look for all the letters in it. The exhibit, on Calder's influence on contemporary artists is titled "Form, Balance, Joy." We totally got the joy!

First, however, we had to understand a bit of what each is.

Therapeutic Listening was easy to wrap our heads around. I perused the Vital Links website and found this basic definition:

Therapeutic Listening® is an evidence-backed protocol that combines a
sound-based intervention with sensory integrative activities to create a
comprehensive program that is effective for diverse populations with sensory
challenges. Therapeutic Listening can impact sensory modulation, attention,
behavior, postural organization, and speech and language difficulties. Trained
therapists learn to use modulated CDs to set up programs for clients in homes,
schools and clinics. Listening is a function of the entire brain; when we
listen, we listen with the whole body.

The therapy involves listening to sounds (music, sort of) on headsets while doing everyday activities, this therapy can begin in an OT session and be continued at home. It would help Charlotte’s balance and, perhaps, catch her up on some development that she may have missed in utero or by being in hospital for the first 49 days of her life.

Given Elizabeth Benney’s (Developmental Therapist) diagnosis of “vestibular instability,” and the resultant probably issues regarding posture; shoulder girdle weakness; inability to isolate gross motor movements; intense reactions to loud and sudden noises; and some fine motor weaknesses, Therapeutic Listening seemed an approach that could help Charlotte.

Floortime was a bit more difficult. My initial research led me to the website of the Interdisciplinary Council on Developmental and Learning Disabilities. Immediately, my warning bells started ringing—Charlotte has no disability diagnosis. In fact, Dr. London (at Rush Neurobehavioral) had talked about figuring out which of diagnosis code to use for insurance since there was no diagnosis of learning or behavioral disability or neuropsych problem. I am not in denial, folks. There isn’t a diagnosis.

I can’t quite as easily provide a simple, direct explanation of the DIR Floortime Model created by Dr. Stanley Greenspan. It is based on Development, Individual differences, Relationship-based approach to each individual child. Reading the website, I got a headache from the warning bells.
But, I take professional advice seriously. And, despite the fact that I felt that the practice that recommended Floortime might be working the up sell pretty hard, I looked for ways to learn more.

This led me to Amy Zier and Associates. Amy Zier is an Occupation Therapist in Chicago who is certified in Floortime. While her practice in Chicago is not contracted to our insurance, she responded quickly to my inquiries and we were able to attend a small seminar she hosted to educate parents.

During the seminar we learned one important thing: Floortime is good for ANY child, but not necessary for all. (In fact, after the seminar we thought that maybe some enterprising marriage counselor could incorporate it into a model for couples’ therapy!)

Amy described in her own words the basic information on the ICDL website. The program focuses on the six developmental milestones:

that every child must master for healthy emotional and intellectual growth. This
includes helping children to develop capacities to attend and remain calm and
regulated, engage and relate to others, initiate and respond to all types of
communication beginning with emotional and social affect based gestures, engage
in shared social problem-solving and intentional behavior involving a continuous
flow of interactions in a row, use ideas to communicate needs and think and play
creatively, and build bridges between ideas in logical ways which lead to higher
level capacities to think in multicausal, grey area and reflective ways. These
developmental capacities are essential for spontaneous and empathic
relationships as well as the mastery of academic skills. (I’m cribbing from the
website here.)

If you are curious, follow this link to learn more about the six developmental milestones.

Philippe and I were fascinated, especially as we recognized our own areas of deficit. The therapy itself is intense. It requires parent and child time with the OT as well as six hours (more or less) of daily at-home therapy.

For us, the bottom line was this: Charlotte does not have any behavioral or sensory disturbances that affect our daily lives. For instance, she does not throw tantrums that seem unreasonable or surprising. Most of the time, we can identify that she is pitching a fit because she’s hungry or tired, not because she is perpetually disregulated.

Considering each of the developmental milestones, we realized that while Charlotte might benefit from the therapy, she didn’t need it. Good thing, too, since Amy is the only certified Floortime therapist in Chicago and doesn’t take our insurance. I didn’t want to trek to the suburbs.

So, based on the evidence, we began our search for the right OT practice.

Stay tuned!

More on the OT/DT Odyssey: Neuropsychology Testing

2010-07-29T14:52:00.008-05:00

Flashback to February, 2010. Charlotte pulling her own suitcase for our trip to California. She'd just lost her first tooth and was feeling SO grown up.

(Remember, all the "action" here dates back to January through March, 2010. I took me that long to feel comfortable writing about it.)

Back when we first heard from Charlotte's pre-k teacher that she thought we should seek some help for the deficits she had noted, Charlotte was still a patient at the Feeding Clinic of Children's Hospital of Wisconsin.

We headed to Wisconsin in July last year for Charlotte's release appointment. (The appointment was so routine, as Charlotte had had her g-tube removed a year earlier and her growth was stupendous. I totally forgot to blog about it!) At the appointment, we consulted Dr. Beth Long, the pediatric psychologist on the team and someone who had known Charlotte since she was an infant, about the concerns raised by Charlotte's teacher.

Dr. Long recommended that while we went about the OT and DT assessments "it wouldn't hurt" to get a neuropsychology assessment as well. Children who spend extended time in the hospital as infants can miss all kinds of invisible developmental milestones. Figuring out now what those might be, she noted, would assure Charlotte success at a later date.

Not wanting to trek to Wisconsin for a neuropscych (Raise your hand if you blame me for that!), I tried to get into the doctor recommended by our pediatrician. Long story short, calling in August, I was able to schedule a November appointment. In the months leading up to the appointment, Philippe changed jobs. So, I called the doctor and the hospital's financial office and explain that we are insured, but that I won't have the ID and group numbers until the appointment. And yet, a week before the appointment, I get a voice message unceremoniously cancelling our appointment because "we are uninsured."

I was incensed. I called and reminded the doctor's assistant that Children's Memorial Hospital serves all children regardless of their ability to may. While not an explicit part of the mission statement or service principles, it boils down to this--children who need medical treatment can get it at our hospital. I ranted, raved, and called the Foundation to ask about how to deal with this (the appointment had already been given away). An hour later, I got an apologetic call from the nurse, reinstating our appointment. I was mortified, for myself and for the doctor, that it took my being a fundraiser for the hospital for us to get to keep the appointment.

So...I called the pediatrician and got another referral, to Rush Neurobehavioral Center. I was charmed from the tagline..."Building on the strengths of children, teens, and young adults." They fit us in right away, in January.

Our (out-of-network ouch) neuropscych evaluation was performed by Dr. Andrea Victor. It began with a sheath of paperwork to be filled out by Philippe and me individually and Charlotte's teachers. The idea is to get a full view of how the caretaking adults in her life perceive her strengths and weaknesses. The questions (as I recall them) centered on sensory concerns, social comfort, and general cognitive development.

Then we had an intake session with just me and Philippe. After that, I took Charlotte to Dr. Andrea for three sessions. I can't tell you much about what happened because Charlotte and the doctor did it all alone. I could probably dig out the instrument names, if you're interested. I know that Charlotte thought they were just having fun and Andrea was testing Charlotte's full scale IQ, among other things.

We also requested an (out-of-network) educational consultant to observe Charlotte in the classroom. A brief aside: Barbara Resnick, educational consultant, not only thought that the Lycee Francais was a good fit for Charlotte. Having never visited the school before, she also noted that she loved its warm atmosphere, supportive environment, and challenging bilingual curriculum. She was really impressed with the school.

Finally, Philippe and I met again with Andrea and Barbara to hear their conclusions and recommendations. Keep in mind, that we had had the catastrophizing OT report around the same time. Andrea read that and incorporated her response to it in her remarks.

The bottom line: Andrea found Charlotte to be of above-average intelligence. She confirmed that Charlotte was reading at about an early 2nd grade level and doing basic math. She found Charlotte to have no major discernible, diagnosable problems. BUT...as noted in OT and DT, Charlotte's fine motor skills are not at the same level as her intellectual skills. While this does not cause a great deal of problems in pre-school, if not addressed, the discrepancy can cause school failure at about 3rd grade, or, as Andrea put it, "when kids stop learning to read and start reading to learn." Without attention to the problem, Charlotte might have a hard time taking notes, copying assignments from the board, doing things that require her eyes to do one thing and her hands to do another.

Andrea suggested we follow the OT advice for OT (not necessarily Floortime) and have Charlotte re-tested in the middle of third grade.

More to come...

More on the OT/DT Odyssey

2010-07-27T09:44:00.005-05:00

Charlotte delighted in being a flower girl at Eve's wedding. She is available for weddings (and the dress still fits!)

Here is the next installment of our OT/DT Odyssey:

Elizabeth referred us to BO&A because she knew that they had therapists trained in therapeutic listening. The name rang a bell and when I did my research, I realized that my friend had taken her autistic daughter to BO&A for years to help with her sensory issues. The clinic is renowned for treating sensory disorders, particularly for children on the autism spectrum. My warning bells rang a bit, but I soldiered on.

It took four months to get an appointment at BO&A. The number of phone calls and the length of waiting sounded some more warning bells, but, like Elizabeth, I couldn't find anyone else in the Chicago area that did therapeutic listening.

We began evaluations in November. These consisted of three OT sessions for Charlotte and, finally, a parent session for sharing results. The only time that the only available therapist could see Charlotte was on Wednesday afternoons at 2 p.m. Wednesdays are Charlotte's half-day at school, so in that respect the timing was nice--no missed school. However, at the time, Charlotte was still napping and this was smack in the middle of nap time.

True to her adaptive nature, Charlotte did great for the first two sessions. She performed all the fine motor tests (lots of copying shapes, connecting lines, recognizing differences and circling them), going many pages past what the therapist had planned for her. Charlotte knew that at the end of the small room activities there was a gym awaiting her, complete with a ball pit to dive in. She lived for the ball pit.

But, Charlotte had a hard time getting out of the ball pit. Physically at first, yes. But, more importantly, emotionally. Without her nap, she had no control over her emotions and would pitch major fits when it was time to leave. No amount of preparation ("Five more minutes," or "Two more dives.") mitigated it well. She would calm down the minute she put on her shoes and got her sticker, but she simply didn't want to stop doing the activity she loved most.

Then, on the day of the third appointment, Charlotte had a temper tantrum in the car on the way there. (Did I mention that BO&A is in Skokie, IL? Usually about a 25-30 minute ride at that time of day.). We were running very early and, rather than waiting in the icky waiting room, I wanted to do a quick errand at the mall. Even tried bribing her with an Auntie Anne's pretzel. But, Charlotte just wanted to get to that ball pit. I explained that she would have to wait for 45 minutes because the therapist was with another child. She was unrelenting. Finally, I pulled in a parking lot and tried a time out. No change in behavior.

So, I called and cancelled the appointment, took her home, put her down for a nap,and enjoyed the three quiet hours. Charlotte really needed her nap, I knew it, and I did what I knew my kid needed.

While Charlotte napped, I fielded a call from the OT about the cancellation. Her take was that I should have brought Charlotte in so that she (the OT) could teach me how to deal with Charlotte's "inability to regulate." I tried to calmly explain that this extended behavior had been out of the ordinary, but my explanation fell on deaf ears and I got a parenting lecture.

We went back the next week and completed the test.

Why this digression about one day in the life of the tests? Two reasons: The therapist clearly wasn't hearing me, on any issue. She held that Wednesday appointment open for us for 4 months (the two it took her to write the report and schedule our follow up and the two months afterword), even after I told her that I likely would look closer to home for treatment. And, worse, she used the incident just described to demonstrate that, in her opinion, Charlotte had serious regulation issues and sensory concerns.

We finally got the report in February, after we had gone through neuropsych testing (stay tuned) and before the neuropsych did her report.

The bottom line of the OT report? It was a catastrophizing assessment of our child that put her just shy of the autism spectrum, called for weekly OT as well as weekly mental health appointments. She recommend something called Floortime Therapy, which when we researched it seemed somewhat inappropriate for our child. And, she dismissed therapeutic listening in one short sentence. Certainly, she found and assessed the fine motor and shoulder girdle concerns that were holding Charlotte back, but the report didn't seem to see Charlotte as a typically developing kid. In our in-person session, the therapist was, in my opinion, dismissive of our questions and concerns, recommending that we read a book about parenting a child with sensory disorders. We didn't dismiss it, of course, but we took it with a grain of salt and some professional assistance. And we sought a different therapy clinic for Charlotte.

Needless to say, we were glad to have the neuropsych and our friendly Aunt Denise, a wise pediatric OT, to offer second opinions!

This brings our odyssey to February. Stay tuned for the January neuropsych testing, our research into Floortime and wonderful conversations with the Chicago Floortime guru, Amy Zier, and our discovery of Oaktree and Miss Jill.

Is Charlotte a Regular Kid?

2010-05-09T23:19:00.008-05:00

This post will be the first in a series bringing you up-to-date about our nearly-year long odyssey with developmental and occupational testing for Charlotte and its outcome. I will start at the end because I don't think suspense works for this blog: Charlotte was found to be a typically developing child with some fine motor concerns. Not visible to most people, these concerns might affect her around third grade if not addressed. So we are, of course, addressing them.

The introduction:

My friend Mark asked me a few months ago if I am finally ready to say that Charlotte is a "regular kid." In many respects, yes, she's as regular as they get. She talked about her fifth birthday beginning in February (at least) and behaving like a silly (or moody) five year old for at least 5 months. She goes to school gleefully most mornings and comes home hungry and exhausted most afternoons. She loves to play outside, build with Legos, and act out her favorite books and movies. (If you hear me saying "Off with her head," it's only because she insists I play the part of the Red Queen in Alice in Wonderland.) She is curious, goofy, cuddly, and kind.

In other ways, she'll never be a completely regular kid. Or maybe we'll never be regular parents. She has not been fed by g-tube since November, 2007 and the tube was removed in June, 2008. Like most five-year-olds, she eats like crazy some days and barely eats on other days. She has a limited repertoire, but it includes unlikely kid foods like black beans, chipotle ranch dressing, and (sometimes) cauliflower. She is average weight for her (above-average) height. But, Philippe and I can't help tallying up her calories on a regular basis and fretting over her weight. We will probably never stop worrying that she's not getting enough calories. And, as a result, we're probably helping her develop some unhealthy habits regarding condiments, chocolate, and other calorie-additives. She won't drink milk without chocolate or strawberry powder in it, for instance.

We're learning all the time what her extensive hospital stay may have cost her developmentally. None of the weaknesses are visible to the naked eye and with appropriate therapies, none should effect her ability to live to her intellectual potential.

Does that make her a less regular kid? The fact of her need for occupational therapy does not make her less-than-regular; her therapy clinic treats lots of typically developing kids. The fact that we have spent a year having her rigorously tested and chasing every bit of information results (and that she never questioned why), probably, from her being not-so-regular. Or, from us being not-so-regular.

The Beginning:

Last June I met with Charlotte's pre-k teacher to talk about what I might need to do with her over the summer, how to help her maintain the French, etc. I was surprised to learn that her teacher had concerns about Charlotte's social skills, her large motor skills (both in relation to her peers), and her fine motor skills. She suggested that I look into an alternate summer program to address these concerns.

I was, not surprisingly, taken aback and disconcerted. We trust Celine, however, so we began our odyssey. I started by reaching out to the Occupational Therapist, Speech Therapist, and Physical Therapists who had treated Charlotte during Early Intervention. The consensus was to begin with a developmental assessment which we did last August.

Elizabeth Benney at Pediatric Resources met with Philippe and me for an extensive intake session and then had a long "playdate" with Charlotte. Her findings, summarized as briefly as I can: Charlotte is a typically developing kid with regards to cognitive and intellectual concerns. She experiences what Elizabeth termed "vestibular instability," a sort of inner-ear related instability that results in her being less confident than her peers about her physical abilities. Thus, Celine noticed that Charlotte was afraid to take risks on the playground, especially with things related to balance (particularly balance beam, balancing above ground). The vestibular instability may (have) account(ed) for her (former) hypersensitivity to loud, unexpected noises.

Additionally, Elizabeth found Charlotte to have poor shoulder girdle strength and a lesser ability to isolate upper body movements. For instance, when asked to draw a circle on an easel, a regular kid can do so moving only her arm and shoulder. Charlotte moves her entire upper body. A regular kid can modulate the throwing of balls of different weights in order to toss them into a basket. Charlotte cannot. (Or couldn't last August.)

All of these things, and the sensitivity to sound, cause kids to turn inward, to prefer to play alone, to have hunched posture. Many of them will self-resolve and are a delay, rather than a deficit. We've seen a lot of improvement in Charlotte, even without services.

Elizabeth recommended a therapy called therapeutic listening. Typically this is introduced by an Occupational Therapist and then pursued at home for 60 minutes over the course of a day. Elizabeth felt that a few months of therapeutic listening would have Charlotte in great shape for Junior Kindergarten.

So, after researching the therapy (which we thought sounded not only workable, but fun), we contacted the one OT practice that Elizabeth knew had therapists certified in this therapy, Beth Osten and Associates, to set up an evaluation.

More to come...

Half a Decade of Charlotte!

2010-05-09T22:11:00.008-05:00

Then (May, 2005)

Today we celebrated Mother's Day by celebrating Charlotte's birthday. Last year I let Charlotte write her birthday blog. This year, I want to take that job back and wish my beautiful daughter happy birthday and thank her for being my reason to celebrate Mother's Day.

For Charlotte the birthday is all about the cake. I made cake for school on Tuesday and made another cake today. Today, we made the cake from scratch. All went well until I took the layers from the pans. One layer completely (or nearly) crumbled. The other almost split in half. The icing wasn't quite spreadable enough. I did my best to "glue" the cake together with the icing, giggling and commenting about the pathetic-looking thing the whole time. Finally, my wiser-than-her-age daughter said, "Mommy, you really need to forgive yourself. It doesn't matter what it looks like. It matters what it tastes like."

----------

It's hard to believe that at at this time five years ago I was recovering from a c-section and a tiny little Charlotte was in the special nursery at Prentice Hospital. I had not yet held her. Since we knew about her heart, she was closely monitored and by the time she was fourteen hours old she had been transferred to Children's Memorial Hospital.

On May 16, 2005, the anesthesiologist carried our tiny love to the operating room. My husband collapsed in my arms and I, seven days post-surgery myself, held him up. I realize now that I had no idea what we stood to lose. My own surgery and my dogged focus on the "here and now" prevented me from imagining anything past that moment. As I look back, I think that I had not yet truly bonded with Charlotte despite having sat by her side for as many hours a day as the nurses would let me.

Last week I randomly flashed on that moment. I had to pull the car over and give in to uncontrollable, inconsolable sobbing. Clearly, we had a wonderful outcome in 2005. And now I fully understand what we might have lost. The thought is paralyzing despite the fact that Charlotte is happily asleep in her bed.

On May 16, 2010, we will celebrate Charlotte's birthday with her classmates, her closest friends, her babysitters, and one of her grandmothers. I can think of no more fitting day to celebrate than the anniversary of the day that Charlotte was really given to us, full of potential and hope.

Now (May, 9, 2010, Cafe 28)

Charlotte, as you enter your sixth year, I wish you the evolution of your unbounded curiosity, the continued growth of your unrelenting optimism, and the full blossoming of your potential. You have taught me how important it is to slow down, reminded me how joyful it is to discover a new book or acquire a new skill, and shared with me more love than I ever knew was possible.

And, in case you were wondering--that pathetic-looking cake was absolutely DELICIOUS!

Chicago Dance Marathon

2010-03-08T20:07:00.006-06:00

For years I've been aware of the Northwestern University Dance Marathon, mostly when my students ask for extensions on assignments because they will be dancing. (I can't say no; they're doing philanthropic work and you know how I feel about that!) This year, my niece solicited my support of her involvement with the self-proclaimed biggest of all collegiate Dance Marathon's, the one and only Penn State 'Thon. But, I never thought I'd get involved in one.

And then we got an email from Children's Memorial Foundation asking us to tell Charlotte's story to a roomful of dancers at the first-ever post-collegiate, off-campus Dance Marathon.

The Chicago Dance Marathon was a direct outgrowth of collegiate dance marathons. Its boardmembers come from Big 10 schools. From what I can tell, they were so moved by the good done by their collegiate dance marathons that they wanted to continue the good work. They are affiliated with the Children's Miracle Network, and through that have chosen Children's Memorial Hospital as their beneficiary.

The dancers began their 13.1 hours at 8 a.m. on Saturday, March 6. We arrived at the McCormick Place Hyatt around 3:30 and were delighted by set up for participating families--there was a room filled with snacks and craft supplies, volunteers to help us, and a ballroom filled with enthusiastic dancers and the children they were helping.

No idea who was "Shaking for Charlotte," but I thought it was wonderful that there was a poster for every child whose story was told. (Of course, there may have been a team dancing for another Charlotte, but I like to think she's the only Charlotte.)

At 4:20 we took the stage. My knees were knocking as I read the (very) abbreviated version of Charlotte's story that we shared. I fought back the tears as I spoke of her surgeries and Children's incredible nursing care. Philippe did a great job ad-libbing off my too-prepared schpiel. I think Charlotte was just delighted to see her baby pictures on display!

Charlotte's friend Trudy brought her parents to cheer us on (Thanks, Bruce, for the photos). Her mom realized that she didn't think of Charlotte as anything but a regular kid and playmate when Trudy started asking questions about "what's that in Charlotte's mouth?" (the breathing tube). The girls enjoyed another hour of dancing, playing, and painting before we took them home for pizza and cupcakes.

The unofficial tally: The first-ever Chicago Dance Marathon for Children's raised nearly $250,000! The organization thinks this may be a record for an inaugural event.

Cardiac Follow Up: Lung Perfusion Exam

2010-03-03T20:42:00.008-06:00

Back in August, 2009 Charlotte went for her periodic check up with her cardiologist Dr. Young. At the time, Dr. Young was unable to get a clear picture of Charlotte's right pulmonary artery. Since this is the arterial trunk that had constriction leading to her second surgery and had a special surgical procedure done to add elasticity to it (my word,s, not the medical terminology), she asked us to schedule Charlotte for a lung perfusion test. Between school schedules and the hospital's schedule, we were finally able to get it done last week. (Clearly it was not urgent, though very important.)

What is a lung perfusion test? The machine looks something like an MRI. The patient has a dye injected into their blood that allows the camera to "see" the blood as it flows through the veins. For Dr. Young this replicates by camera what the Doeppler does via soundwaves, with the added bonus of guaranteeing that she can see everything she needs to. The test takes about 45 minutes, during which time the patient needs to lie still. The 4 3/4 year old patient!

Charlotte and I arrived at 9:00 a.m. Friday morning. In one of our best-ever experiences with the Radiology Department waiting room, we were called back to the Nuclear Medicine imaging room within about 10 minutes.

Our technician Steph explained the procedure to Charlotte. She and Charlotte had Bubba check out the machine first. Bubba had to be reassured, Steph told Charlotte, because he might be scared. Only Charlotte could make him brave.

The trickiest part is numbing the hand or arm for the IV and then inserting the needle. That's the only "owie" and the part that scares Charlotte. She had two major concerns, "Please no bandaids" and "When can I watch my movie?"

To ease Charlotte and me through the IV procedure, Steph had Emily from the Child Life Department walk us through the numbing and needle. She brought an "IV teaching kit" and demonstrated what would happen. Then she sat with us the whole time.

Our biggest trauma was that Charlotte's vein didn't like the "popper," an air delivery system of Lidicaine which forces the medicine through the skin with a strong blow of air. After the "popper" the IV went in easily but there was blood in the draw back. What does that mean? When Steph pulled the needle back to check the IV placement, blood came back. For Charlotte it meant that we had to pull the first IV out and start again. She screamed, and rightly so. I blinked back tears. We both blew bubbles and watched Emily to avoid the needle.

Charlotte earned a bravery certificate:

I earned a few more gray hairs!

After Steph pushed the dye through the IV, she pulled the IV and Charlotte settled onto the table for the part she came for: watching 101 Dalmations (Betcha thought I was going to say Mary Poppins!).

Charlotte's point of view during the test. She was actually irritated when the test was over because she hadn't gotten to watch the movie to the end. (And she was hungry.)

There have been some incredible process improvement since Charlotte's last lung perfusion test June, 2006). To begin with, Nuclear Medicine has a new, beautiful room within the radiology suite. It is bright, cheerful yellow; that in itself is a major improvement over the putty gray from last time. Even better, the machine is new. Rather than the donut that Charlotte had to be slid into, the new machine features two large rectangular cameras that angle around the patient, leaving lots of open space. To get the 360 degree view, these big rectangular cameras are rotated 60 degrees every 5 minutes. In one view, Charlotte is completely visible and not penned in at all. (I'm trying to find the last post and photos of the lung perfusion; stay tuned for an update to this post with a link.)Finally, and hands down Charlotte's favorite part, the screen the technician uses for positioning and checking the medicine doubles as a video monitor.

Charlotte did tell me over lunch that she "didn't want to do that again soon." Who can blame her, really? But she was, as always, braver than brave.

My hat off to Steph, Emily and the digital imaging student. They made this a truly painless, happy 90 minutes or so.

Where's that tooth? (Or, we're still rookies)

2010-02-21T16:20:00.004-06:00

Charlotte's new toothless grin. Bottom left tooth. Lost on Friday, February 19, 2010!

On Friday, Charlotte, Philippe, and I were sitting at lunch when Philippe suddenly, and with a hint of alarm in his voice, said, "Charlotte, open your mouth." "What's up?" I asked. "Not sure," he said, "either something is on her tooth or...hey, where's her tooth?"

What I thought was ketchup from her french fry turned out to be blood from the sudden loss of her bottom front tooth. The tooth, we quickly determined, was lodged in Charlotte's hamburger. This was a bit surprising as we expected it to still be lodged in her mouth.

To be honest, I flipped out a bit, thinking we had a broken tooth. Since there was blood, I also though we had to call the doctor or dentist immediately: Due to the artificial valve in her heart, Charlotte has to take a prophylaxis antibiotic prior to dentist's visits to protect against infective endocarditis. I had no idea if she also needed an antibiotic if she had a trauma to her mouth that could lead to the introduction of bacteria into her blood stream.

Since I flipped out, Charlotte started crying. We quickly called the dentist, left a message, and tried the pediatrician.

Based on my description, the nurse determined that Charlotte had simply lost her first baby tooth! Upon hearing that, Charlotte stopped crying, started giggling, and asked if the tooth fairy would know where to find her on vacation.

The dentist called back and said that we did not need antibiotics, thank goodness.

We're going to check in with the dentist on Thursday to make sure it's just the baby tooth, but that is what it looks like for now.

Really...I freaked out, lost my appetite, and shook for a good half hour. My brain wheels started calculating the calls we'd have to make to rearrange our vacation, the begging to the airline to rebook the tickets, the long afternoon in the emergency room with a broken tooth. I was wondering if we needed to keep the burger in case the tooth had broken on something hard in it.

Once the dentist called back, I was finally able to relax. Charlotte has been grinning her newly toothless grin ever since. She's delighted!

And it turns out that that Tooth Fairy can find Charlotte wherever she is!

Charlotte's New Year

2010-01-01T15:43:00.001-06:00

Last year I wrote that our resolutions for Charlotte for 2009 were: To learn to eat happily and politely so that meals can stop being the most stressful times of our day. To learn to dress herself. (Yes, both of those are actually mom & dad's wishes for her.) To learn to peddle her bicycle so that Mommy will put the bell back on. To go back to Virginia Beach and play in the sand. To visit Nenenne in Belgium. To go back to New York City. To turn four. And, as always, to continue to grow from strength to strength.

How'd she do? Well, mealtime is still pretty stressful, but getting (mostly) better all the time. She mostly dresses herself, but really slowly because she prefers "full service"parenting. She didn't get back to NYC, but she did drive through it and refused to sleep. Doesn't that count?

Bicycling is a story in itself. Here's the short version: Charlotte fell twice in one day in April. For the rest of that week, she rode her bike. A week later she stopped riding. A few times she let me get her helmet on her and then got hysterical. After that she simply wouldn't even consider it. This lasted nearly 5 months. Sometime in the fall she announced that she was ready to ride again. She went as far as the library and back that day, probably about a mile round trip. From that moment on, she was the riding queen.

In 2009 (in no particular order):

Charlotte was "promoted" to junior-kindergarten, or as we call it at the Lycée Français, la moyenne section. She loves her new teachers and the class bunny, Coton.

Charlotte finally got to Boston to meet her Aunt Bobbie (my father's sister) and Uncle Melvin (my father's uncle). Cousin Mark nailed a cold reading of Skippyjon Jones.

She made it to Belgium to see her Nenenne and aunts and uncle. As a bonus, she also made it Paris and met my friend Fabrice, his partner Sonia, and his daughter Eva. The trip was such a success that Eva came to Chicago to visit us in October.

She went to New Jersey multiple times--to see her cousins Taylor and Jamie graduate from high school, to celebrate Thanksgiving, and again in December for the annual Goldman Hanukah exchange.

Expanded her movie repertoire to include 101 Dalmatians (101 times!), Cinderella and Lady and the Tramp.

Taught herself to read. Really read. We're at about 1st grade level, I think. She reads everything--books, street signs, sale signs, you name it.

Started to get interested in basic math.

Decided she likes to eat (or at least try) whatever we eat for dinner, including black bean cakes, cod seasoned with Emeril's cajun seasoning, tortilla-crusted tilapia, salmon, steak, you name it. She doesn't always like it, but she nearly always tries it.

Started swimming lessons, progressed very little, and went on swimming strike.

Learned to write the alphabet

Had tubes put in both ears, ending the chronic ear infections

Hade her release appointment with Children's Hospital of Wisconsin Feeding Team

Was assessed by a development therapist and an occupational therapist to address some school conerns (*more on this later)

Grew another 2 inches, reaching the height of 43" or so, a virtual giant, and gained 5 lbs. for a total of 40 lbs.

Discovered board games and mastered a 100 piece puzzle

Lost Bubba and, more importantly, dealt with the loss with uncommon maturity

She still loves Bubba, ignoring the fact that he's a "replacement;: plays the piano and sings, still making up her own melodies and words as she goes; plays dress up every time she can

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. We haven't needed to visit him this year, but he's always going to be on the top of the list

Dr. Luciana Young, cardiologist extraordinaire

Dr. Kathleen Billings, ENT

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

Janet Holzman , of Kids' Kastle and her assistant Ramie, the very next best thing to caring for Charlotte myself

Lycée Français, Charlotte's teachers and friends

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

Dr. Charlie, Charlotte's dentist

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.

Can you imagine not being able to feed your kids?

2009-12-17T11:46:00.006-06:00

Can you imagine not being able to buy groceries for a holiday dinner? Or for tonight's dinner, for that matter? How about not having train fare to visit your kid in the hospital? We have struggled for years to get Charlotte to eat, but we have never had to struggle to put food in front of her.

My dad used to call me a bleeding heart liberal. He may have been right, but I can't imagine anything worse than not being able to feed and clothe my family. Charlotte has shared hospital rooms with children whose parents have nothing. One mother told me that her church raised money for her groceries, she lived on her sister's couch, and she'd been looking for a job for a year. Fortunately, her child's health care was covered through Medicare and his many therapies through the state's early intervention program. Even though she was sitting with a 2-year old who had just undergone heart surgery, she didn't feel sorry for herself. She just wanted to find a way to take care of her kid.

So, when I went to Children's Service Board holiday celebration, I gladly brought a grocery store gift card to help out a family at Children's. It was the least I could do. Now, I'm hoping you'll help me do more....

Partners with Parents

Children's Memorial Hospital, Chicago IL is seeking support for the Partners with Parents Program. This program empowers parents who are going through financial difficulties due to their child’s illness to provide a holiday celebration for their families. Your donation of gift certificates to local stores will be distributed this holiday season to families chosen by hospital staff based on their financial need. Monetary donations to this program will also assist patient families who are financially burdened and do not have other means of paying for public transportation, taxi fares, clothing, rent and utilities needed for medical equipment once they leave the hospital. This year, the hospital is especially seeking gift cards to food places such as Jewel, Dominick’s, Walgreens or Target. There are many families this year that are unable to buy food for their families.

If you would like to help out, contact Lauren Pedi (773.880.8106) at the Children's Memorial Foundation. Or email me and I can give you information about where to send a donation.

Topping Off Celebration

2009-12-07T21:08:00.009-06:00

Nineteen months ago, I attended the groundbreak ceremony for the new Ann & Robert H. Lurie Children's Hosptial of Chicago. With my mother by my side, I had the privilege to join politicians, philanthropists, doctors, nurses, and patients as the dream of a new hosptial began to become a reality.

Tonight, with Charlotte, I attended the. hosptial's "topping off" ceremony. A topping off ceremony occurs when the last beam of a building is hoisted, usually with an evergreen. The ceremony, like a ship's naming, celebrates a major landmark in the project and thanks the construction workers. The evergreen symbolizes growth and good luck.

Charlotte and I signed the beam, adding our signatures (and my mother's name) to the thousands of other names--construction workers, donors, politicians, medical professionals--who have made this day possible.

After some snacks (Charlotte ate a chocolate-dipped marshmallow, mini-bratworst, 2 gingerbread men, and a hot cocoa); speeches by politicians, including the indomitable first lady of Chicago Maggie Daley; entertainment by ice skaters and a children's choir, we thrilled to watch the beam go up the tower.

Charlotte and I had front row seats. I held her up as tears streamed down my face and Charlotte cheered with glee and joy.

In her remarks Ann Lurie (or was it Maggie Daley?), quoted Christopher Reeve's famous remark, "When you choose hope, anything is possible." Five years ago, after a devastating prenatal diagnosis, we chose hope. We chose Children's Memorial Hospital. And you all chose to come along for the ride, crying and cheering along with us. Along with Charlotte and her doctors, you are our heroes. Thank you.

And now for a blatant plug:

The hospital's bones are up and it's time to add the flesh and blood. Our capital campaign is still underway--in this economy, fundraising can be a bit slow. In this season of giving, if you can give anything to our critical mission, the bricks and mortars, please consider it. Visit Heroesforlife.org and follow the link "How to be a hero."

While you're there, check out the campaign song. Tonight we heard it sung by a famous Chicago gospel singer. Extraordinary!

Sometimes we forget she's not a regular kid

2009-12-02T16:45:00.006-06:00

Just another goofy four-year old on a school field trip to the farm (October, 2009).

Sometimes I forget that Charlotte is not a regular kid. Yes, every morning and evening as I help her dress for school or get ready for bed, the scars remind me. In between those moments, it is easy to forget a lot of our struggles and take for granted that she is a healthy kid who happens to also be medically complex.

Philippe is reminded (haunted?) by her past struggles at mealtime. Those days when she gobbles up everything in sight do cause us glee and gratitude that probably is a bit exaggerated. The days when she behaves like a regular 4-year old and refuses to eat make us crazy because we are wired to force-feed. We work really hard on our mantra "just a regular kid," but it can be hard.

What most slaps me across the face, however, are the regular-kid moments that are just a little bit not-so-regular. Let me try to draw the picture for you:

Charlotte loves to play doctor and she loves to pretend that she is the mommy taking her child to the doctor. One day last week the scene went something like this:

"Mommy, I'm going to take my baby to the doctor."
"Okay, sweetie. What is the appointment for?"
"Well, she was just born* and now she needs to go for her surgery."
"What surgery?"
"Her heart surgery."
"Charlotte, sweetie, you know that not every baby has to have surgery when it is born, right?"
"Yes. My baby has to have her surgery because she is very little."
"What kind of surgery?"
"Heart surgery, just like me. Her heart was broken when she was born, so I'm taking her to the doctor for surgery to fix it, like me."

-----------------------------

Charlotte has an imaginary bear named Purple Bubba who figures regularly into her pretend play and creative scenarios. Usually he represents her aspirations and can easily do things that scare her or that she's not quite ready for (like swimming, but that's another story). Sometimes Purple Bubba makes my heart stop:

"Mommy, Purple Bubba is chewing all his big boy food!"
"Wow, that's great. But, I am not surprised because you always tell me that he is a good eater."
"Yes, but you know, when he was little he had a tummy tube. I had to feed him through his stomach."

She's a regular kid, alright, complete with giggle fits and temper tantrums, moments of wonder and profundity, and growth spurts that astound. But, she's never going to be quite regular, is she?

We Are Grateful For...

2009-11-25T09:29:00.005-06:00

Another photo from our October staycation. We got too busy to blog daily as we had guests in from France. We took them to the John Hancock Tower for the best views of Chicago. More on that soon!

We are grateful for books that inspire excursions, imagination, and everlasting fascination. Thanks, Andrea! And, thanks David Roberts for drawing one of my favorite Chicago skyline images. Iggy Peck, Architect rules!

(We are also grateful for independent bookstores. The link goes to Women & Children First, a perennial favorite bookstore in Andersonville. If you need to order books for holiday gifts, please shop here!)

StayCation: France

2009-10-30T16:12:00.005-05:00

Ah, staycation....First we had a visitor from California, then we hit the highlights of Chicago with Daddy [Chicago Botanic Garden, Museum of Science and Industry]. After that, Charlotte had to go to Kids' Kastle (our wonderful local home daycare) so I could work on a conference paper. Daycare is a treat for Charlotte because she loves the teachers, she gets to play all day in a small group, and she is usually the oldest one there these days. But, it wasn't really worth blogging since I wasn't there.

After daycare, we began the international part of our staycation with visitors from France. When we visited Paris in May, we spent time with my friend Fabrice and his 11-year old daughter. We proposed that she could visit any time. She reminded him. And reminded him. And reminded him. So, we planned a trip. Then her grandmother (who I've known for years and who Philippe met about 7 years ago) heard about it and said she wanted in on the trip, too. Charlotte came with me to meet Odile (left) and Eva at the airport.

We took them to some of Chicago's most special places, like...the Museum of Science and Industry. Yep, Charlotte went there on Monday and on Thursday and she enjoyed (almost) every minute.

Later in the visit, we took them also to the Observatory at the top of the John Hancock Tower. It may not be the tallest building in Chicago, but the view is extraordinary. The four big people listened to the excellent guided tour. Narrated by Chicago's own David Schwimmer, complete with a plug for the theatre company he founded here (Victory Garden), the tour gives excellent information about the buildings contextualized in a wonderful history of Chicago and how the neighborhoods surrounding the tower have evolved. A big plus: You can almost see the new Children's Hospital building from the 95th floor. Charlotte loved finally seeing the view that graces the middle of Iggy Peck, Architect (see Thanksgiving week post for a photo).

Then, Charlotte got bored and cranky and nearly made me lose my mind with her impatience. What saved the day? My SLR digital camera! Charlotte took dozens of pictures of, in her words, "the whole world." She declared that when she grows up she wants to be a photographer. Karley would have been proud!

Some of the pictures were pretty good, too. In fact, she took one of the best pictures of me that I've seen in a long time. Maybe I'll post it one day. Here's a skyline picture by Charlotte:

Here's a picture of Charlotte, Philippe and Eva "cleaning the windows" of the John Hancock Tower. Cheesy, I know. But cute!
After the Hancock Tower, at about 12:10 p.m. on a Saturday, we managed to get into The Cheesecake Factory with a 5 minute wait. When does that happen?! Needless to say, our French guests were thrilled by the decor and opulence, and a bit cowed by the portion sizes. Charlotte was thrilled to be with Odile and Eva. We learned the extent and limits of my menu French as I tried to translate and differentiate between sausage, pepperoni, and other pizza toppings! I can't leave this entry without commending the best waitress, Cheryl. I cannot remember right now why she was so extraordinary, but it was clear that she enjoys her job and we thoroughly enjoyed her.

Just another vacation day in Chicago!

Still on StayCation

2009-10-29T08:36:00.005-05:00

Philippe took Monday off to have a stay-cation day with us. We headed out early to the Museum of Science and Industry to beat the crowds. I had "scored" a museum pass from the Chicago Public Library, but it turns out that the MSI is free all weekdays during October. The place was empty.

We started with You! The Experience, the newly reinstalled permanent version of the Body exhibit. According to the website, it celebrates the connection between the human body, mind, and spirit. It's totally interactive and loads of fun.

We started with the Giggle Garden, an installation about the importance of laughter. We learned that laughter is good for the immune system, the heart, and all kinds of things. Charlotte learned that the more she moved, the more the people on the t.v. screens giggled.

Next we learned about the importance of sleep. I liked this exhibit--we got to lie down and watch cartoons about sleep! The interactive display asked questions about our sleep habits and then played different videos about maintaining a steady bedtime, having a dark bedroom, and getting enough sleep. It didn't judge us on our bad habits' answered.

The exhibit stresses the importance of human connections. This installation allowed Charlotte to "build" her support system by answering questions about who she turns to for help in a variety of situations. I'm not sure she quite understood it, but she loved typing in names and touching the computer screen. Here's one iteration of her support system. She chose the names with no (or very little prompting). We had to ask her sometimes if she wanted to choose a friend, family member, teacher just to get the concept across.

On the way to lunch we checked out the trains and planes (sorry, no automobiles).

After lunch we had one last adventure in the Lego room. Philippe enjoyed the Lego architecture Falling Water construction while Charlotte built a tower. Maybe we'll get Philippe back there on January 23 when Adam Reed Tucker, Lego architect in residence, will be building on site.

Charlotte spent Tuesday and Wednesday at Kids' Kastle while I wrote. She had a blast, made another pumpkin, and rode her bike all the way there and back.

We're Still on Vacation, in Chicago!

2009-10-25T21:15:00.004-05:00

Today was the perfect day for an outdoor adventure. We headed to the Chicago Botanic Gardens to "tree peep" and check out the haunted railroad garden.

Cloudy with a 30% chance of rain morphed into sunny and too warm for our fall jackets. The gardens were explosively gorgeous, shades of orange, red, yellow, and green. As you can see above, the gardeners have been beyond creative in using natural materials to makes things that haunt, crawl, creep, and wow.

Charlotte, of course, has no idea of how exciting it is to see this exhibit as landmarks of the United States. Philippe and I did not know that the model buildings change every now and then. But, mostly we were excited by the dragon made of leaves, the spiders, the pumpkins, and all the other ghoulie things.

I think Charlotte was excited.

Oh, and she got to make a gift for Miles, a cat mint plant. Miles likes to eat our plants. Our hope is that he'll eat this plant and not the houseplants. If it grows. (It did tip over on the way home.)

Behind my "big" and "little" are obelisks made of red mums. Stunning.

After lunch, we took a scenic car ride (read: let Charlotte nap in the car) and headed to our synagogue for a concert by Dan Nichols. The true highlight was that our friends Mhari and Ava were accompanying Mr. Nichols with their temple choirs. Charlotte could barely contain her excitement and had to be convinced not to interrupt the concert to say hello. She's never been so close to celebrity (the girls, not Mr. Nichols). *I'm not posting a picture because I never post other people's children without explicit permission, in case you're concerned after reading today's New York Times.

After a very early dinner, Charlotte was so excited to go for a walk around the neighborhood. Dad and I got rated "as fun as Karley" because we took her out after dark. Woo hoo! I'm finally as fun as Karley!

p.s. Thanks to Philippe for the great photography!

We're Staying on Vacation!

2009-10-24T13:26:00.005-05:00

Fall Break at Charlotte's school began on Thursday afternoon. To quote Charlotte, "We're staying on vacation" this week because "vacation is coming to us."

California, here you come: We began our break with a visit from my friend Kath G. from Palo Alto. Kath, Charlotte, and I went to the Art Institute. It was Charlotte's first visit to an art museum. She enjoyed the Impressionists for about 5 minutes, lingered in front of Seurat's Sunday on the Grand Jatte for another 3 minutes. Her interest in Seurat is courtesy of the wonderful book Feed Matisse's Fish. She's seen the painting dozens of times in the book. Seeing it face-to-face and looking for details that we can't see in the reproduction held her attention for a few minutes.

The Thorne Miniature Rooms really captured her imagination. Sixty-eight tiny reproductions of period rooms from different eras and locales across the United States, like little dollhouse rooms. We made a game of finding items in each room and deciding what rooms were fit for princesses.

I had not seen Kath G. since Charlotte was about 8 months old. She and Charlotte clicked and had a great time. At lunch Charlotte asked if Kath was coming home with us because she wanted to play more with my friend! Visiting with an old friend (ancienne, pas vieille), was delightful, even more so because Charlotte was angelic most of the day.

Stay tuned for more of our "stay-cation". We're planning fun excursions and we'll have exotic visitors by week's end.

And guess what? No doctors' appointments all week. I think that's a first!

Remembering Jeffrey B. Gardner on 9/11

2009-09-11T06:55:00.004-05:00

Since 2007, I've taken a break from Charlotte's story to remember my friend Jeffrey who perished in the World Trade Center on 9/11/2001.

This is the first year that President Bush will mourn the victims as a private citizen. As President Obama gets ready to lead a moment of national silence in 45 minutes, I wonder what the passing of the torch will mean in terms of our memories. 9/11 is becoming "history" as have so many excruciating (and exhilarating moments in our nation's history. Right now, Charlotte is obsessesed with a book called Moon over Star, a picture book about a little girl's dreams as she watched the moon landing on television. Though 9/11 cannot make a lovely bedtime tale, I believe it is equally important that our children who were too young to understand, or those born after 9/11, be taught not only the international significance of the date and how these horrible acts have changed our world forever, but also the human cost.

I think I like President Obama's idea of a day of service. In a time of mourning, nothing seems more imporant than tikkun olam, healing the world, and what better way to do it than to help others. I can't participate this year, but will look forward to next year.

My posts about Jeffrey have put me in contact with lost friends and elicited responses from strangers. One of those strangers is Jeannette, who will remember Jeffrey on her blog as part of the 2,996 Project. I'll link to her post when I see it.

In the meantime here's my essay again. 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 killed 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.

Finding Bubba (sort of)

2009-09-04T14:06:00.003-05:00

We searched, we cried, we despaired. Charlotte moved forward, comforted us, and occasionally broke our hearts by asking about Bubba.

And then...then one sleepless night I saw a comment from my choirmate Jess asking simply, "Have you checked eBay?" to find a replacement. Philippe had checked eBay, but his search turned up nothing.

My frantic, guilt-ridden, midnight search turned up:

A lot of not one, but two Bubba-twins. The eBay auctioner read my story (I emailed to ask if this really was the same bear and would she compare her picture to ours) and did not charge us for shipping.

And, now we sing (with apologies to The Chiffons): "Our Bubba's back and he's better than ever, hey la, hey la, Bubba's back!"

Charlotte knows that he is Bubba's twin brother (she has only seen one of the bears). We've decided, at her prompting, to pretend he's the real Bubba and tell people that he was on a rejuvenating spa vacation. Wish I could have gone to, he looks great.

Just in the nick of time for the first day of school (yesterday).

Charlotte is happy as a lark. I still cringe occasionally when I see that he's not spit and sand colored. But, my heart skips a beat when I see her holding him upside down, rubbing his tag, sucking her thumb, and sleeping soundly. I wonder at our daughter's resilience and how she handled this loss far better than either of us.

Many thanks to Jess for her thoughtful comment. And to Bizziegram at eBay for her compassion.

"All is right in her little world tonight," I think as I kiss them both good night.

Searching for Bubba

2009-09-04T13:56:00.002-05:00

Charlotte and Bubba recovering from heart surgery, March, 2007, Children's Memorial Hospital, Chicago

Looking for Bubba became our own version of the t.v. shows Without a Trace and CSI: Chicago. After Philippe’s early morning trip on August 17, I continued to call the Field Museum, Shedd Aquarium, and Adler Planetarium daily. I sent emails to the Lost & Found Department. I chose, however, not to leave a message with the answering service of the Museum Park Café Restaurant. A poor decision, it turns out.

As the week wore on, Charlotte “tried on” different best friends. From her collection of beloved stuffed animals, she napped with Nemo, Pitty Pat, Bubba’s Baby Brother, Mama Kitty, and some others. None of them quite fit the bill. She needed a certain size, a tag that is nice to rub while she sucks her thumb, and a unique ability to sniff. She finally adopted Bubba’s Baby Brother (a smaller, whiter version of the famed Bubba, also give to her by Bamma) though she continued to cuddle at least 4 other animals while sleeping, often piling them on top of each other.

About once a day she would ask me “Mama, why did I lose Bubba?” This has to have been the most heartbreaking question of all. Other questions included, “Where is Bubba?” “When will I get Bubba back?” Mostly, however, our little girl comforted us, telling us that she would be fine.

But, what did happen to Bubba? We can trace his whereabouts to Tuesday, August 19 and then the trail runs cold.

On August 20, I had a job interview on the south side of Chicago. On the way home, I passed the museum campus and decided to look once more. I stopped at the Museum Campus Café and spoke with Yvette, the manager. As I asked, “My daughter lost her lovey on Sunday morning. Has anyone given you a small brown…”, Yvette finished my sentence, “brown bear, about this big. Really dirty and smushed?”

“Yes!” I said, bursting into tears, “You have him?!”

“No,” Yvette responded sadly. “We did have him. Someone found him on the picnic table on Sunday around 3 p.m. We left him there all day, hoping his friends would come back. I could tell he was very well-loved and would be missed. So, I asked my employees to bring him in rather than throw him away. We kept him in the office on Monday [it rained all day that Monday]. On Tuesday, my workers tried to convince the groundskeeper to throw the bear out, but he remembered what I’d said. So, he put the bear back on the tables. We don’t know what happened to him after that.”

Poor Yvette. I burst into hysterical tears. I had come so close. I knew that he had been found and cared for, but then the trail stopped cold.

I tried the museum again. No luck.

Yvette called her groundskeeper to see if he had perhaps kept the bear another night or two. No luck.

I left a message for the Lakefront area Chicago Park District office. Heard back from them on August 25. No luck.

I tried not to feel horribly responsible, for losing Bubba to begin with, for not having left a message for the café earlier, and for not leaving our number with the café on Sunday. I tried not to rethink every decision and search strategy since The Loss. No luck.

I tried not to cry. No luck.

Philippe went back to the museum campus on Friday, August 21 and looked again. No luck.

We came so close. But then the trail went cold.

We ordered a new bear from the Internet. It came in and was all wrong so we kept looking.

I went to yoga class where our teacher suggested we breath in all that we wanted to add to our lives and breath out what we wanted to get rid of. I breathed out "guilt, guilt, guilt." It worked!

We Pause for a Moment (of silence, from our sponsor? You pick)

2009-08-17T06:38:00.002-05:00

Caveat: This blog is usually about Charlotte. I try to keep my emotional interventions to a minimum, saving my rants about our various situations for my journal. Of course, I do rave here, as you know. So I hope you'll humor me this one time as I vent the words that have kept me awake since Philippe left an hour ago, in thunder and lightening, to go look for our beloved bear.

How we slept last night, the night we lost Bubba. Charlotte conked out at 7:30, peacefully hugging Bubba’s Baby Brother, Nemo, and Mama Kitty. Philippe and I tossed and turned, he devastated by the loss of a bear that has such symbolism for our family; and I was racked with guilt.

Here’s the thing*: Charlotte handed her most beloved possession to me, her mother. She entrusted me with her best friend. She gave me the one bear that I knew would need rescue in case of an emergency exit (from anywhere). I somehow managed to not secure him in the backpack. He fell out (or never made it in). This is squarely my fault.

Here's the other thing: When is enough enough? Her heart, her feeding tube, her reflux and constant vomiting, her helmet, 3 years of physical and speech therapy, her eyes, her ears, the school's recent concerns about potential development and socialization challenges. So many other daily struggles that we don't share on the blog, our grown up struggles. All these we have born with whatever dignity, strength, and grace we could. I realize, and am grateful, daily that we have fewer troubles than many. That Charlotte's relative health and her exuberant happiness are blessings and our daily reward. But, why did we have lose her Bubba? When is enough enough?

And now, I have images of a poor lost bear, tumbling along the rivulets caused by this morning’s thunderstorm, scared and alone. I see him being tossed into the lake by some callous person. I have waking nightmares about him getting run over by a car, having his eyes pulled out by a nesting bird, his stuffing flowing into the dirt.

Philippe left the house at 6:00 a.m. to go look for him again. In the violent thunderstorm.

Charlotte doesn’t blame me. Yet. I can only imagine how this plays out in adolescence. Philippe doesn’t blame me. But, I blame myself. And, Bubba, if we could find him, wouldn’t blame me. He’d look up with his crooked, smashed smile, streaked with washed out pink marker, give me a sniff, and then let me off the hook.

I wish it were so easy.

*With apologies and great admiration to Lisa Graff's The Thing About Georgie.

For the Love of Bubba

2009-08-16T13:42:00.007-05:00

Bubba at his proudest, sitting at the foot of Charlotte's crib in NICU 204, helping her recover shortly after her first heart surgery.

We lost Bubba today. Philippe and I have feared this day for a long time, ever since Charlotte definitively chose Bubba as her favorite friend. First it was Mr. Mouse, then Duckie, then Bubba. Bubba is the beariest bear, the best friend, the one who is always there. And then, somewhere between our parking space and the entrance to the pirate exhibit at the Field Museum, Bubba fell out of our backpack.

Today, we told Charlotte that no bears could come into the Field Museum because Sue the T-Rex is afraid of bears. I told her there was a sign. Smarty-pants said, “Mommy, I didn’t see that sign when I was there with camp.” So, we let her take him in the car, with the intention of leaving him the car (that’s what we usually do). She was kind of whiny, so I let her put him in the backpack. What happened after that is a blur.

We retraced our steps, checked lost and found at three museums three times. We looked under cars, in trash cans, and in trees.

Here’s the thing, if you found a clearly well-loved, dirty, lost-most-of-his-stuffing bear, what would you do with it? I’d set it carefully in a visible spot near where I found it, or I’d take it to a nearby store/museum/restaurant for lost and found collection. Other people, it seems, must think “finder’s keepers.”

Charlotte was hysterical for about 30 minutes. Then off and on sad for another hour. Now she seems rather resigned to the loss. She’s hoping Daddy can find her a twin bear to name Bubba and she’s trying to nap with Bubba’s Baby Brother and her other dozens of friends.

Philippe and I are, on the other hand, beside ourselves. I’m ready to cry.

Why, you ask? It’s just a teddy bear, right? Sort of.

Bubba helped Charlotte not have a meltdown when our trip to NJ took nearly 12 hours.

Bubba held a gift card given to us by my mother when Charlotte was three weeks old. He proudly sat at the end of her hospital bed for the next month. Then he took up residence in her crib.

Once she adopted him as her favorite, he slept close to her head. Bubba survived reflux with the rest of us, only it was much harder to keep him clean when he was in the line of fire. Over time, after several trips through the washing machine, and an accidental fall into the bathtub, we gave up trying to clean him. Lovely golden Bubba became more sandy-colored, stained, even striped with the occasional magic marker. When Charlotte’s GI doc told us this past week that we could put him in a bag and wash him on the delicate cycle, Philippe and I looked at each other and smiled. We’ve done that. Maybe a dozen times. We were sure one more time would be the end of Bubba.

Once Bubba was the clear favorite of Charlotte's menagerie of friends, I made a special trip to Babies-R-Us to get a back-up Bubba. By that time, the design of their gift card bears had already changed. So, no back-up Bubba.

Charlotte’s teachers all knew to check her backpack at the end of the day to make sure he came home with her. The new Executive Director at our synagogue met us by asking to meet Bubba.

When I couldn’t convince Charlotte to leave Bubba at home for field trips at camp this summer, I made him a collar with an id tag. He came home every trip, safe and sound.

Bubba helping Charlotte nap at Ton Ton Ricky and Tante Andre's home in Belgium

Charlotte usually carried Bubba upside down, rubbing his tag while she sucked her thumb. He sniffed her boo-boos to help them feel better. He went to every doctor appointment to help her be brave. Bubba recovered Charlotte from open-heart surgery when she was 21 months old, from ear tube surgery last month, and from every scrape and bruise in between. Sometimes he’s the only thing that can cheer her up when she’s sad or tired.

What I’ve learned today is that Charlotte is quite brave without Bubba, too. She’s bravely trying to nap; announcing that if Daddy can find a twin, she’ll name him Bubba; and telling me that she loves all her stuffed friends and that Nemo is also her best friend.

Sooner or later Charlotte will realize that he’s really gone. Gone forever. Her dad and I are sad because he is a symbol of all she has survived, all she has conquered, how far she’s come, and how strong she is. Charlotte will be devastated by this first permanent loss of a best friend and treasured bear. We’ll all never be the same.

Requiem for Bubba*
Bubba the Bear Ba Ba
Bubba the Bear Ba Ba
Bubba the Bear was always there, was quite a bear.
We had a bear named Bubba
He was like no other
We loved him like a brother
We’ll miss
Bubba the Bear Ba Ba.

*To the tune of the Addam’s Family theme song. Don’t ask.

The "Bear Facts":

Charlotte has more than a dozen bears. At last count I think the bear-ventory was 26. (We'll get back to you on that.)
The name "Bubba" derives from Baby Charlotte's earlierst attempt to say "bear." To us it sounded like "buh buh." Her friend has a bear named Ba-Ba. Same derivation.
Bubba traveled to Virginia; New Jersey; New York; Boston;, Newton MA;, Paris, France; all over Belgium. But Bubba got lost at home in Chicago.
Bubba survived vicsious ;) attacks by Baxter the dog and other predators.
Bubba was vomited on more than even Mommy. He didn't care.
Bubba has a purple imaginary brother. He's not lost.
Mommy copes with the loss of Bubba by blogging.
Daddy copes with the loss of Bubba by going to Babies-R-Us. No luck. Now he's online trying to track down the company that makes BRU's private label animals.
Charlotte is trying to nap, as she promised us. But she is not asleep. Could be the rain. But, probably the bear.
I'm so sad that I've just left the laundry on the line in the pouring rain.

It's Easy as ABC

2009-07-24T12:10:00.005-05:00

Charlotte is teaching herself to read. I have known for sometime that she recognizes certain words (stop, sport, park), particularly words we see on road signs that we pass with regularity. But, I really thought that it was all about pattern recognition and not yet reading.

On Monday, however, she set me straight. Sitting in the lobby of our gym, she asked me why a sign said, "Men" instead of "Women." I explained the two different lockerrooms and then realized, "Charlotte is reading!" Since then she has asked me, "Mommy, why does that say xxxx?" several dozen times.

So, I went to the library and picked up some easy reader books. I got classics like One Fish, Two Fish and The Cat in the Hat (I can't believe we don't own those) and some new Elephant and Piggie favorites by Mo Willems, Watch Me Throw the Ball, Elephants Cannot Dance, and I Love My New Toy. We spent much of Charlotte's post-surgical rest time reading a stack of books. Actually, Charlotte did most of the reading. She's beginning to figure out how to sound out words. One of her favorite games is to take a word and figure out how it sounds if we change the first letter (pig, big, dig, etc.)

As if this new development stage--teaching herself to read--isn't blowing my mind enough, on the way into camp yesterday, Charlotte turned to me and said, "Mommy, two plus two if four, right?"!

Medical Update: Myringotomy and Tympanostomy Tubes

2009-07-22T16:54:00.008-05:00

In her quest to become a regular kid, Charlotte has been plagued since the beginning of pre-school with regular kid health concerns. She had so many ear infections during the school year that I truly lost count.

After consulting with her pediatrician, Dr. Newport, and her otolaryngologist, Dr. Billings, we decided to move forward with a myringotomy and the placement of tympanostomy tubes. Lots of fancy words to say that her ENT decided she needed tubes in her ears. Essentially, Dr. Billings planned to ventilate Charlotte's inner ear by making a tiny incision in the ear drum and then make the ventilation "permanent" by placing the tubes.

The original plan had been to do this in August so as not to miss camp. But, Charlotte asked me to move the date up and "get her ears fixed" because she's has a great deal of intermittent discomfort.

Bright and early this morning, we woke Charlotte up and took her to Children's Memorial Hospital. She was delighted to head out in her pajamas, but quite distressed to be skipping breakfast. (Yes, you read that right!)

Our appointment was for 8:45 a.m. Per instructions, we arrived at 7:15 a.m. and waited to be called to the surgical suite. Once we were there, Nurse George heard Charlotte asking for a room with a window--he arranged that. Room number 8, her favorite number.

Nurse George doing Charlotte's pre-op exam. Charlotte's post-op RN was Nurse Tim. Two guys in one day. Wonders never cease!

After all the pre-surgical stuff (temperature, height, weight), the anesthesiologist walked us through his procedures and cautions. Given that this procedure requires about 10 minutes of laughing gas (more or less), we didn't have to hear the dire warnings about possible serious negative outcomes of anesthesia. Nevertheless, having your kid put under general anesthesia--gas or IV, for a heart procedure or tubes or tonsillectomy--is quite nerve-racking.

Dr. Billings answered our questions. Here's Charlotte's question: "Will the tubes feel poky or sharp or like water in my ears?" Dr. Billings answer: "Nope!"

Dr. Billings listened intently to Charlotte's question. The picture was overexposed, so here's a shot of her walking us through post-op instructions.

Charlotte asked me to go with her to the operating room, so I suited up. As she puffed into the orange-scented mask (her choice of scent; I thought it smelled like orange cleaning fluid), the nurse suggested she try to make the balloon attached to the mask pop. Groggy and getting irritated by the medication (normal reaction), Charlotte whipped off her mask and said, "I don't like when balloons pop!"

I sat with her until she was too goofy to know I left, her eyes rolling back in her head for the final sleep. My heart was pounding.

I met Philippe and we went to the waiting room. I need to pause and note that Carol, the waiting room attendant, has been at CMH for at least 4 years. She remembered us and asked how Charlotte was doing. What seriously amazing customer service.

Literally 10 minutes later, Dr. Billings came in to tell us that it was all done, Charlotte was in recovery, and that it had gone well. So well, in fact, that she cut the post-surgery ear drops by one day. I think that most of the lingering fluid (what had sent us to her to begin with) in Charlotte's ear finally cleared up last week, to tell you the truth.

Charlotte woke up gradually, but happily. She was a bit grumpy because she was hungry, but ready to go.

We were on our way home by 9:00.

We were supposed to have her rest this morning. So, we watched about 30 minutes of The Sound of Music and read a stack of books. I've got a great video of more "resting" that I'll try to post tomorrow. Charlotte ate a huge lunch and took a 3 hour nap.

Back to camp tomorrow, just a regular kid!

Travels with Charlotte

2009-05-30T12:37:00.000-05:00

In May we took Charlotte to visit her Nenenne, aunts, and uncles in Belgium. We thought the weather would be nice, so we promised her a trip to Ostende, the beach her dad enjoyed as a child. As you can see, Philippe and I always keep our promises!

On the way home we spent a few days in Paris. I have lived in Paris and have visited the city about a dozen times. Both Philippe and I have seen the Paris sights, even visiting some of them together. But, neither of us had ever thought about Paris and children. We were not, however, stumped. We figured we'd scour our own memories and the Internet for ideas. After all, we only had 2 days to fill and since Charlotte still naps, we needed short adventures.

The first thing that came to mind was Niki de St. Phalle's Stravinsky's Fountain just next to the Centre Pompidou. Charlotte still talks about the Chicago exhibit of St. Phalle's sculptures, so it seemed an obvious choice. Charlotte's first Metro ride to Les Halles was a big hit, seconded only be her discovery of the first piece of public art she enjoyed in Paris:

And the St. Phalle--Tinguely fountain was a hit! Charlotte was enchanted. The fountains were turned off because the display was being cleaned, but that did not dim her excitement. We circled the fountain, stopping to talk about each sculpture (and take a bite of her much-needed crepe snack).

In addition our own brainstorming, our Paris preparation included a Google search on the key words "Paris, children" and some other words. This search returned an excellent beginners guide to Paris, "10 Great Things to Do with Kids in Paris." If you do the same search, you'll come up with a full page of travel blogs that have similar titles. I'm guessing they also have similar tips. The bottom line? Paris is studded with playgrounds. And kids love playgrounds.

So, why go there? Seriously, Chicago has tons of playgrounds, too. So what's the big deal? But, we had the tickets and the trip was planned. And Charlotte LOVES playground. Paris playgrounds proved perfect for the whole family. Why?

Well, Philippe would want me to first mention that the playgrounds we visited had coffee stands adjacent to them. A good espresso was available for about 1 Euro.

The playlot in the Jardins due Luxembourg is, as promised, huge. And it is the only place I know of where the entry fee for the children is more than for the adults! We walked in from the north end of the gardens and we all thoroughly enjoyed walking past the Palais du Luxembourg and through the stately gardens. The playlot has several climbing structures and a sandbox. Charlotte quickly found the jungle gym on which she was most comfortable and she had a blast. Philippe found espressos and a park bench for us. And, to top it off, we discovered that the entry fee guaranteed a pristine bathroom.

We did not try the carousel or get to see a puppet show, so there is more to explore for a return visit.

Our next stop was a playground that I remember walking past many times, in the Champs de Mars at the foot of the Tour Eiffel. Yes, Chicago has playgrounds, but where else can the backdrop to the jungle gym look like this?

Once again, we found the espresso and a bench. Charlotte truly had a blast.

And, Philippe and I did discover something of Paris we had never seen, the Wall of Peace in the Champs de Mars, a truly remarkable structure with an even more remarkable raison d'etre and dream.

Finally, every great city has a great children's museum and Paris is no exception. The Cite des Enfants features interactive exhibits designed to be enjoyed in about 90 minutes. Charlotte skipped from exhibit to exhibit, thoroughly enjoying fresh experiences like sound and touch exhibits, and kinetic play structures, as well as more familiar things like a water play room. The camera batteries died so you'll have to imagine it!

We can't report on any kid-friendly restaurants as we mostly ate in the apartment we rented and spent our evenings with friends who live in Paris.

What we can say is that Paris in unequivocally kid-friendly. When we left our bag of crayons in the one cafe we visited, the waiter happily held them until my return.

And what did Charlotte think of Paris? Did she realize where we were? Well...As we entered the Champs de Mars from the Ecole Militaire, I pointed at the Eiffel Tower (at the far end of the park) and asked Charlotte if she knew what the structure was. She said, "Mommy, that's Paris!" Indeed. We'd been in Paris for two days and she figured it out when she saw the Eiffel Tower!

Happy Birthday to Charlotte!

2009-05-09T13:23:00.003-05:00

For Charlotte's first three birthdays I wrote a blog entry, a letter to Charlotte or a poem, describing her year, what she had achieved, and a list of things we wished for the coming year. Charlotte wanted to do it herself this year. So, here it is, a bit late, but none-the-less, Charlotte's third year in Charlotte's own words:

Countdown to Four!

2009-05-04T22:38:00.005-05:00

"Look at me, Mommy. I'm in the toy box." Hmmm...maybe I should stop call her my dollbaby?

Charlotte is so excited about turning four this weekend that she can hardly sit still. Every day she asks, "What day is it?" And, as I do every morning, I tell her the day of the week, the month, and the date. We talk about what day yesterday was (that Monday follows Sunday and the 4th follows the 3rd, etc.) And then she asks, "Is it my birthday?" "No," I say, "What day is your birthday?" "May 9th," she screams gleefully.

And so began the "countdown to four." On Saturday we celebrated Charlotte's last Saturday of three by attending our buddy Max's first communion and celebrating with his family. Then we visited with a baby friend, Ainsley, who we hadn't seen in way too long (and her parents and sisters, of course. The baby, however, sticks with Charlotte who has renamed her baby doll "Ainsley.")

The last Sunday of three was spent at a new playground with more friends.

And the last Monday of three was spent at school.

But, dear reader, you're hoping for some kind of real update, aren't you?

Here it is: As Charlotte winds up her third year on earth she has started babbling. Yeah, I know, she did that years ago and has been speaking in full sentences for as long as we can remember. But now, she's babbling in French.

At first (last Friday), we heard just the vowel sounds, but the words were nonsense. Saturday night, at Ainsley's house, she was saying things like, "E fou fou e jardin." Ah. A word I recognized. "You want to go to the garden?" "Oui!" Then, "foo foo foo au cours du photo foo foo ebe." Ah ha! "The baby is in the middle of the photograph?" "Oui, oui!"

Today, on the last Monday of three, she babbled in French for an hour before school. At bedtime, she told me all about the books I was reading in English: Pinkalicious turned "une jolie rose." In Stone Soup there was "un petit chat" and "une petite fille en jaune." Then she asked me for "d'eau" and when I handed her the water said, quite clearly, "une verre d'eau." She handed it back to me and said she was ready to "fait dodo," grabbed her "doudou" Bubby, rolled over and ended her last Monday of three.

For IL Residents--Please Support Charlotte's Hospital!

2009-04-28T15:50:00.002-05:00

We need your help. Please take five minutes to contact the Governor and your state legislators regarding the Children's Memorial Hospital State Capital request by April 30th.

Governor Quinn and the Illinois General Assembly are in the process of developing a capital bill. As you may know, Children's Memorial has asked the State to contribute $14.4 million to funding the construction of a neonatal intensive care unit in its new hospital, the Ann & Robert H. Lurie Children's Hospital of Chicago. We respectfully request you to contact your State Representative, your State Senator and the Governor to urge them to include Children's Memorial's $14.4 million request in the final capital bill before Thursday, April 30.

Please note that we request you click on each link in order to reach both of your representatives and the Governor.

To email your Representative and Senator, please click on the following link - http://capwiz.com/childrensmemorial/issues/alert/?alertid=13227351&type=TA.

To email Governor Quinn click on the following link - http://capwiz.com/childrensmemorial/issues/alert/?alertid=13227491&type=SW.

This will only take 5 minutes of your time. The wondeful folks at the Children's Memorial Foundation have prepared draft letters and ask you to personalize your message if possible.

CMH Cath Lab, Or the Importance of Philanthropy

2009-04-22T16:11:00.009-05:00

In early April, I had the distinct honor of attending the dedication of the new cardiac catheterizion lab at Children's Memorial Hospital. Funds for the new lab were raised by the Children's Service Board just before I joined the board. If I'm not mistaken, it took about $3 million. While I was not on the board when this gift was made, I was eager to see the new lab as Charlotte has had two cardiac catheterizations.

The new lab is inside the operating theater suite, allowing the cardiac interventionists to work even more closely with the surgeons. Because the lab is within the sterile suite, children can move from the lab directly to surgery if necessary and, if a condition proves truly emergent, surgery can occur in the lab.

Catheterizations are guided by sonogram and the camera now installed has 360 degree mobility, allowing for much more detailed views of the heart and better diagnosis as well as more precision in determining the success of a procedure.

We got to play with the IVs and other tools used for procedures such as closing VSDs, various stents, etc. (We only played with demonstration items--nothing that would be used on a kid!) Closing a VSD used to require open heart surgery; now the doctors can insert the patch via an IV, reducing the invasion into a child's heart.

Dr. Jeffery Gossett, pictured here, delivered a wonderful presentation, then gave us a tour, and guided us through the different tools (or "toys" as he called them), showing us videos of each utensil at work. It was astounding. When we talk about the miracle of modern medicine, I think we really only know part of the story. What Dr. Gossett and his colleagues do on a daily basis takes a steady hand, intense focus, and dedication. It was a privilege to see even a little bit of his world.

Since we were all suited up in sterile gear, the nurse who coordinates the operating theaters, gave us the grand tour. I can't tell you how moving it was to enter the operating room in which my darling girl's heart has been repaired twice.

In case you're wondering, the new equipment will be moved to the new hospital.

To see more and better images of our excellent catheter adventure, click here.

To learn more about the Children's Service Board, please visit Childrensserviceboard.org.

SHAMELESS PLUG: To learn more about the new hospital and become a Hero for Life, please visit Heroesforlife.org.

Make Way for Charlotte

2009-04-19T16:16:00.004-05:00

Charlotte and me with Aunt Bobbie. Charlotte said, "Now Aunt Bobbie isn't a picture."

It's Spring break for Charlotte. We packed up and headed to Boston on Friday. Charlotte declared her excitement and anticipation, "Know why I'm excited to go to Boston? Two reasons. One, because Aunt Bobbie won't be a picture any more. And two because I get to see the duckling."

First, Aunt Bobbie: Friday night we had Shabbat dinner with Aunt Bobbie, her son (and my cousin) Mark, and our cousin Eric. Charlotte was clearly thrilled to meet her cousins and aunt. I was just delighted to see my family. It had been way to long. We thought Charlotte might be shy with Mark and Eric as she'd only seen one or two pictures and not heard as many stories. She'd spoken to Aunt Bobbie on the phone a few times, so I wasn't as worried about that.

And the verdict? No shyness at all:

Mark teaches at Boston University in the theatre department and is a founder and the artistic director of TheaterBridge at Brown University. So, we tested his cold-reading skills with Skippyjon Jones in the Doghouse. I'll be honest, the Skippyjon Jones are tough reads on the first run through, and "in the Doghouse" doesn't flow as easily as the original. While they are cute, fun, and engaging, this is no Iggy Peck, Architect and it is not for the shy reader. And, after no nap and much excited, his audience was not her usual sit-still for reading listener. I'm proud (and none-too-surprised) to announce that Mark hit all the high points, even making up a melody when the text suggested a song!

On Saturday we met Aunt Bobbie at the Public Garden in Boston to ride the swan boats and visit the ducklings. What ducklings, you ask? Jack, Kack, Lack, Mack, Nack, Oack and Quack from Robert McCloskey's Make Way for Ducklings. Now, the aficionados amongst you are counting and shaking your heads. "Eight ducklings, Ilene, eight. You've forgotten Pack," you might be sighing. No, I haven't forgotten him. He was stolen. While he's been recovered, he has not yet returned to the gardens.

Charlotte acted as a willing stand-in, quacking all the way.

After a wonderful morning and lunch with Aunt Bobbie, Charlotte decided not to nap again. We headed to Newton to spend the evening with fellow Brunonians Lisa and Dan Davis and their children Zoey and Marc. Charlotte took to the two big kids immediately and the grown-ups were able to have a lovely visit. So lovely, in fact, that we lost track of time and Charlotte went to bed at 10 p.m. for the second night in a row!

My Mommy Made It

2009-04-16T20:47:00.002-05:00

And what I mean is, my mommy made it, this adorable skirt, nearly 40 years ago. I don't think hand-me-downs get better than this! Thanks, Mom!

Chocomolic

2009-03-23T21:43:00.005-05:00

Several weeks ago Philippe and I were invited to friends' for dinner. I volunteered Philippe to make his famous chocolate mousse for dessert. Charlotte was delighted to help. I think the pictures speak for themselves.

While cleaning up, Charlotte had a chat with Bamma. Bamma asked Charlotte if she was, like Bamma, a "chocoholic." Charlotte said, "Yes, I'm a chocomolic."

I can't make this stuff up. Really.

A Role Model?

2009-03-23T21:28:00.004-05:00

"You're my friend, Taylor." Clearly! And, no, Taylor is not a shrimp; Charlotte is a giant.

Last night Charlotte's good buddy Taylor came over for a playdate and dinner (with her parents, of course). She quickly declared my chicken chili delicious (it was) and ate about 3 bites.

Then, Taylor's dad was trying to get Taylor to eat a bit more. [Aside: This always makes us feel good because it means we're not the only ones who have to push our kid to eat.] So, I said, "Hey Charlotte, show Taylor how you can take a big bite of soup." She said, "Sure. It's yummy." And, damned if she didn't shovel another spoonful, chock full of chicken and veggies, into her mouth.

In the end, Andy definitely got Taylor to eat a lot more than Charlotte, but I was stunned.

Charlotte's Homage to Heath Ledger

2009-02-22T21:18:00.003-06:00

Since 1988, I have religiously watched the Academy Award ceremonies. From 1990 until 2001, I hosted a big party. Not Vanity Fair big, but big enough that friends I hadn't seen in a year knew to just stop by. Until 2006, I had seen a lot of the movies. You all know why we haven't seen so many movies in the past few years. I used to be able to predict many of the awards, based on my opinion and my actual knowledge of the films. Now I guess and have a lot of fun doing it.

Heath Ledger's win was no guess and no surprise. And Dark Knight is one of a handful of nominated films I saw this year. I also saw the set being built in Philippe's office building. So...

In honor of Heath Ledger's posthumous win this evening, I wanted to share this picture of Charlotte, our little joker (not evil in the slightest, by the way). She is honoring a man she's never heard of who was brilliant in a movie she never saw. But, it gives me an excuse to post this classic photo!

Rainbow Time. A story by Charlotte.

2009-01-29T07:07:00.004-06:00

Just can't get enough of these kitty ears!

The other night Philippe put Charlotte to sleep while I was out. I came home at 8:30 p.m. and we could still hear her whispering. She whispered until at least 9 p.m. When I went up to bed, I checked in to pull her covers up (she hates covers), and found that she had fallen asleep sitting up against her pillows, with her arms out to either side as if she were sort of flying.

Yesterday I asked her what she had been doing and why she hadn’t gone to sleep right away.

Here’s what she said, in her own words:

“It was rainbow time.”
“What’s rainbow time?”
“We, me and my friends [ed. note: “friends”= the menagerie of stuffed animals on her bed] fly up in the sky and get a rainbow and come back. I don’t fly, but they do. And I pretend my Bamma blanket [a blanket my mother knit for her] is a bag or my purse. The rainbow is in all wrapped up in another bag. I put it down when I sleep and then I put my arms out like this.”

“Last week,” she continued,” we were not really sleeping. We were not getting rainbows. We were getting hearts and putting them in a bag. And then we were at the movie theater*. When we’re at the movie theater we take the things out when we get there.”

I asked her what she did if only her friends fly into the sky. She responded, “I help them. I hold their hand and they fly like in I Can Fly. Piggie is so silly in I Can Fly, thinking he can fly….” She went off on a wild tangent here about this Mo Willems early reader book and I didn’t catch it all on paper.

As Charlotte told me this elaborate story, I wrote it down. Once she understood that I was writing it down, she embellished and embellished. The kid is a natural storyteller. I was riveted! Or, just maybe I was riveted because she’s mine. Who knows?

*Pronounced thee-ay-ter. I’m not sure where she gets that from, though Philippe says my mom. I know our friend Chuck pronounces it that way, but she hasn’t seen him in a long time.

Hurray for Today

2009-01-20T09:13:00.003-06:00

"My country 'tis of thee, sweet land of liberty..."

In November Charlotte came with me to vote. We both voted for Mr. Obama (is anyone reading this surprised about that?). Bubba voted for Mr. McCain because Charlotte thought everyone should get a vote from us.

Charlotte was excited that Mr. Obama won. And, one of her best "toddler tricks" is her recognition of his picture whenever she sees a poster, newspaper photograph, or, today, an inauguration pin on someone's lapel.

But, since last night she's reached new heights. We've been telling her that today is the day that Mr. Obama will become president. I tried to explain that Mr. Bush would be president when she left for school and Mr. Obama would be president by the time she got home.

Here are some of her comments since yesterday:

"Mr. Obama is my favorite president."

"Mommy, look, there's my president." (Watching Mr. and Mrs. Obama leave Blair House this morning.)

"Mommy, if Mr. Obama is still president when I get home from school and I'm bigger, let's go see him."

"Ooh, Mommy, that house is pretty." (Upon seeing the White House for the first time.)

"I know, Mommy." (When I mentioned, again, what a special day it is.)
"Really? He's from Chicago?" (How had I forgotten to tell her that? Her eyes went open so wide when I mentioned that he is from a neighborhood not to far from some friends of ours.)

I'm pretty sure that my explanation of the nature of our peaceful exchange of power went right over her little head. But, she did recognize the American flag and she wants to understand why people all over the world are excited today.

I am moved to tears, not just by today's extraordinary events, but also by my daughter's 3-year old eyes watching this day and seeing her realize how special it is. Mr. Obama will be her president--not just because (I hope) he will work to make her world better, but because he will be the first president of whom she is aware and who she will remember. He has the weight of the world on his shoulders as he stands on the shoulders of his predecessors to take office today. I think the most important expectations he may have to live up to are the expectations of the children.

Here in our house we wish President Obama patience, wisdom, strength, good judgement, good will, and good luck.

How many times have you seen Mary Poppins?

2009-01-06T17:44:00.002-06:00

How many times have you watched Mary Poppins? This week? Charlotte is currently obsessed with Mary Poppins. Last week she watched it on 4 times in 2 days—we had borrowed by brother’s Explorer in New Jersey and was nicely outfitted with a built-in DVD player. Charlotte watched the movie on the way in to New York City, on the way out, and then the next day on the way to and from Long Island.

Today she finally started singing songs from the movie: “Just a spoonful of sugar helps the medicine do gown, the medicine do gown.” No, those are not typos. That’s how she sings it!

Funny thing is, as crazy as she is about her stuffed Nemo and Dory, she won’t watch an entire animated film. I can’t get her interested to save my life! But, Mary Poppins is the best.
So…I brought Sound of Music home from school today. It’s nearly 3 hours long, so I don’t think I’ll get her to watch the whole thing. But, I’m willing to try!

How Do You Measure a Year? or Happy 2009 from Charlotte

2009-01-01T19:58:00.000-06:00

Last January I wrote that Charlotte's resolutions for 2008 were: "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. " She did all these things--gorgeously, gleefully, and gratefully.

Here she is this past fall.

In 2008:

She had her g-tube removed. She wanted me to be sure to note that Nurse Mary took the MICkey button out.
She learned to use the potty.
She spent 6 months in the most amazing home day care center ever.
She started and adores pre-school at the Lycée Français.
She reached the amazing height of at least 41.5 inches (3 inches since last January). I don't know her exact height which means we've been to the doctor a lot less this year. An accomplishment in itself. I do know that she seems to have outgrown her brand new bicycle.
She weights about 35 pounds. Up about 4 pounds since last January.
She is figuring out that written numbers correspond to quantities. She routinely asks questions like, "What is one and one?"

She can finally say her name. She does still insist on being called 'harlotte when she's about to be naughty.
Vomiting? What's vomiting?
She still sings in French. Gorgeously. And now she speaks in French, too.
She still loves Bubba, plays the piano and sings, still making up her own melodies and words as she goes.
She is teaching herself to read. This morning she asked me, "Why does it say cup on your pajamas?"
She loves books (but you knew that).
As for the food front, stay tuned for another blog entry shortly.
She "graduated" (with honors) from physical therapy and speech therapy
She discovered the joy of making art projects.
She can finally climb the ladders in the playground

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. We haven't needed to visit him this year, but he's always going to be on the top of the list
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
Janet Holzman , of Kids' Kastle and her assistant Ramie, the very next best thing to caring for Charlotte myself
Lycée Français, Charlotte's teachers and friends
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

In summing up 2007, I wrote: "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." For 2008, I have simply to echo that. Charlotte wakes up smiling and giggling most days. Her glee is infectious. Like all 3-and-a-half year olds she can try our patience. She seriously knows how to be naughty.

But, most of the time she radiates happiness and spreads it where she goes. (If you omit mealtime from the equation.) She is cooperative, inquisitive, and as responsible as you can expect a 3-year-old to be.

Charlotte's resolutions for 2009, you ask? To learn to eat happily and politely so that meals can stop being the most stressful times of our day. To learn to dress herself. (Yes, both of those are actually mom & dad's wishes for her.) To learn to peddle her bicycle so that Mommy will put the bell back on . To go back to Virginia Beach and play in the sand. To visit Nenenne in Belgium. To go back to New York City. To turn four. And, as always, to continue to grow from strength to strength.

May you all have a blessed and gleeful 2009!

New Year's Eve Chicago Kid Style

2008-12-31T19:42:00.000-06:00

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!

Happy Hanukah!

2008-12-21T19:53:00.004-06:00

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:

Fettucine Alfredo

2008-11-03T12:00:00.001-06:00

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....)

Trick or Treat

2008-10-31T22:32:00.001-05:00

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!

Feeding Clinic Visit

2008-10-29T21:25:00.004-05:00

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.

Opthamology Update

2008-10-28T14:04:00.006-05:00

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!!

Just a Regular Kid, Sometimes

2008-09-23T21:52:00.003-05:00

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....

Big and Little

2008-09-11T21:41:00.003-05:00

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

2008-09-11T09:02:00.004-05:00

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.

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.

First Day of School

2008-09-04T21:18:00.003-05:00

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!

Another Milestone

2008-08-24T22:09:00.003-05:00

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

2008-08-24T22:02:00.002-05:00

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!

The Joy of Cooking

2008-08-16T11:27:00.002-05:00

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

Eating Update

2008-08-13T18:08:00.004-05:00

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.

So...you 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.

Cardiac Update

2008-08-08T16:53:00.004-05:00

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).

My Cheeky Three-Year Old

2008-07-28T23:52:00.004-05:00

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!).

Charlotte the Sand Crab

2008-07-08T08:18:00.003-05:00

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!

Thinking of Truncus Arteriosus and Other Heart Babies Today

2008-06-27T15:06:00.006-05:00

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.

Hurray for Underpants!

2008-06-18T20:51:00.003-05:00

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."

Feeding Clinic Update

2008-06-05T20:32:00.004-05:00

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.

She Eats & Eats!

2008-05-22T08:33:00.003-05:00

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

Three? Is she really three?

2008-05-09T00:01:00.002-05:00

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!

We Really Are Here

2008-05-04T21:24:00.006-05:00

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!

A Year Ago Today

2008-03-21T20:44:00.000-05:00

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.

One year ago...

2008-03-20T20:50:00.004-05:00

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

2008-03-20T20:18:00.003-05:00

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.

Reflux Chronicle: Trialing No G-tube

2008-02-27T20:24:00.005-06:00

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.

Cardiac Update

2008-02-22T21:17:00.006-06:00

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!

My Chicago Snow Angel

2008-02-13T21:42:00.001-06:00

Reflux Chronicle: Another Hurdle Cleared

2008-02-12T22:37:00.005-06:00

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!

Charlotte Reads: Bouncing, Dancing, Galloping ABC

2008-01-30T22:08:00.001-06:00

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

2008-01-30T21:52:00.001-06:00

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.

My Honeys

2008-01-25T22:49:00.001-06:00

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?

Reflux Chronicle: Trialing No G-tube

2008-01-08T21:39:00.000-06:00

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!

Happy New Year!

2008-01-01T07:41:00.000-06:00

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

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.

Introducing...

2007-12-30T23:24:00.000-06:00

Charlotte's red glasses. She's had them for a week and she reminds us to put them on her. My favorite glasses moment? Last Thursday night (her first night with glasses), we sat down for storytime before bed and she said, "Now I see Iggy!" Yes, she said "I." And, yes, she was talking about her boyfriend Iggy Peck. But the part that floored me? The fact that she immediately noted the difference in her vision.

Stay tuned for the purple glasses!

Many thanks to Brandi for the gorgeous photo.

Charlotte Reads: Iggy Peck, Architect

2007-12-18T23:34:00.001-06:00

(Click on the title of this entry to hear Charlotte reading Iggy Peck, Architect by Andrea Beaty with illustrations by David Roberts.)

Of course Charlotte reads Iggy Peck, Architect. She's been reading Iggy obsessively since he first took her attention away from Elmo in October. If you know Charlotte, you know that distracting her from an Elmo book is pretty big.

Mom loves Iggy. I've given at least 4 gift copies. I am one of the reasons that our local Barnes & Noble can't keep it in the store; I hand it to every person I see when I'm shopping!

Charlotte must love Iggy, too. She can repeat the entire book from memory, with no prompting, and often does so randomly (like in the grocery store). She has carried it in the stroller and had me read it to her while we walk (as Mo Willem's Pigeon would say, "True story."). It's a good thing that I, too, know the book by heart or we might have walked into a brick wall.

Why do we love Iggy? Well, to start with, he is bright, creative, and fun without being mischievous. Andrea Beaty's rhymes sing and inspire; her word choices encourage language play and vocabulary building; and her story begs the reader to pick up an encyclopedia and look up some nifty buildings. David Robert's illustrations are urban and hip. He gives just enough detail (check out the "things that one should not mention" on the page where Iggy becomes a hero) or none at all. When Iggy is crushed by his second grade teacher's edict against building, the double-page spread shows nothing but a dejected Iggy at his desk, his pencil on the floor. A whole lot of white space = Sheer Brilliance.

We first met Iggy in mid-October and it was love at first read, so we were not surprised to read that Time Magazine had named Iggy Peck, Architect one of its Top 10 Children's Books for 2007. Charlotte and I are proud to say, "Yeah, we knew that."

Reflux Chronicle: Days without...

2007-12-11T12:39:00.000-06:00

"'harlotte is eating a sandwich just like Daddy do." Mommy is fklemt.

We have long been in the habit of counting DWOV (Days without Vomit). Recently, most every day has been a DWOV. So much so that we've lost count. Yeah, Charlotte occassionally coughs up stuff, mostly like anyone does with a cold. But when she has a cold, she's more likely to vomit at meals or in bed. Last week's cold involved only one bed change and a few small urpcidents. It was a huge milestone for us.

So, what are we counting these days? DWOTT--Days without Tummy Tube. In the past 14 days, Charlotte has taken 100% of her calories by mouth (drumroll, please) a total of 9 days. On the days when we've used the tube, it has been for only 40 mls. and only once a day. So, 65% of the time she's 100% orally fed. And the other days she's 93% orally fed.

Today at lunch she downed her peanut butter and jelly puree, chomped on some pretzels and blueberries, and then asked for a sanwich. She asked for it. And proceeded to eat about 1/16th of a pb&j sanwich on wholewheat.

Where were we a year ago? She was eating about 50% by mouth and vomiting almost daily, going for only 3 to 5 days without vomit.

2007 has been quite a year.

Happy Hanukah!!

2007-12-04T21:25:00.000-06:00

Or is it Hanukkah? Or Chanukah?

And while we're on the subject, do you pronounce latke laht-kuh or laht-key?

These are the age-old questions of the holiday!

And, in case you were wondering, when Charlotte woke up on Tuesday, she was more excited that it was mommy's birthday (was it tacky of me to mention that?) than that Hanukah was about to begin. Of course, once she opened her present, that was all over! The KidKraft Menorah had to sit on the windowsill during her bath and then on her bookshelf when we put her to bed. The minute she came downstairs this morning, she declared "Mommy brought Charlotte's Hanukah downstairs! Charlotte play with that?"

Josh Malina was recently quoted in People magazine discussing his family's Hanukah celebration:

Hanukkah celebrates a time when Jews weren't allowed to observe their religion,
but they still did. It's about being proud of who you are. I feel power in the
fact that when I'm lighting Hanukkah candles, Jews all around the world are
doing the same thing. We feel the same way.

In that spirit, I leave you all with my best wishes for a wonderful Hanukah and with the words of Debbie Friedman, "Be gracious to the ones I love and bless them with goodness and mercy and peace."

Medical Update: Opthamolgy Report--Strabismus

2007-11-30T21:01:00.000-06:00

Charlotte had her annual eye check up on Friday. And as Gilda Radner would've said, "It's always something...."

We were a bit concerned because we'd noticed that her right eye tends to cross in when she's concentrating. Typically we could see it when she was eating, especially if she was fighting us or being super silly during a meal. By the time we got back from Belgium, we thought we could see it less, that it had corrected itself.

But...bottom line is this: Charlotte will soon be sporting a pair of bifocals. She has a minor strabismus of the right eye. (Yeah, in the photograph it looks like her left eye.)

This is not, as the website I've linked to notes, something that Charlotte will outgrow. As much as we cringe at the thought of marring her lovely face with glasses, we know that early detection and treatment is the only solution to a strabismus. Charlotte's strabismus seems to be intermittent, so the glasses are our first course of action. It is my fervent prayer that it will be our only course of action. Philippe suffered through years of ocular therapy as a child and does not remember them fondly. I sported a patch. My cousin had surgery. Hopefully, because Charlotte's strabismus was caught earlier than any of ours, the glasses will be it.

We're planning on making a family outing on Saturday to choose the glasses and then to get them on her as quickly as possible. We'll follow up with the eye doc on January 29.

I have no more answers to our myriad questions because this doctor (notice I have not named names) is the only doctor we've encountered in nearly 3 years who doesn't make a few minutes to let a parent gather her thoughts and ask questions. Because this is a public forum and I know that our medical community occasionally reads the blog, I'll say only this: Charlotte's eye doctor is one of the best pediatric opthamologists in the Chicago area and I trust her with my child's eyes. I am, however, incredibly frustrated that she does not take the time to allow me to ask questions and become as informed as I can about my child's vision problems. Philippe is coming to the next visit with me so we can make sure we get answers.

Don't be calling my kid "four-eyes"--she'll kick your behind!