Is Charlotte a Regular Kid?

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!

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."

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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

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

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)

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

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?

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

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

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."


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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...

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!)