Prepare to Be Amazed

On June 9, 2012 Children's Memorial Hospital, or "Charlotte's Hospital" as we call it, will move into its new home and become the Ann and Robert H. Lurie Children's Hospital of Chicago.

I was fortunate to attend the hospital ground breaking with my mother on April 21, 2008. Charlotte and I attended the "Topping Off" ceremony when the last beam was hoisted to the very top of the tower on December 7, 2009.

To complete the symmetry, Philippe and I joined my fellow Children's Service Board members and their spouses on Tuesday for a special ribbon cutting ceremony and tour. I simply don't have the words to describe the emotions we had so I will instead share with a few pictures.

Lurie Children's has been designed to improve children's care from myriad perspectives. The building and its furnishings feature the latest in technology and in green design. The designers also considered ways to reduce children's and their parents' stress, to make all elements of a hospital stay more palatable and convenient. They enlisted the aid of parents, patients, doctors, and staff to understand how each group uses the hospital and what they need.

Teenage and adolescent girls said they needed to look good in order to feel good: The new hospital has a salon that will be staffed by volunteers from the Neiman Marcus salon. Children of all ages said they needed to get fresh air: The sky lobby features two "pocket gardens" that allow children to safely go outdoors, on the 11th floor, enjoy fresh air and view of Lake Michigan. Doctors needed better teaching spaces and collaboration options: Surgical suites have most equipment on ceiling-mounted swing arms to allow for more fluid movement and there is a conference room that can accomodate 300 or be split into 3 smaller classrooms. It won't hurt that this room has panoramic views of Chicago and Lake Michigan!

Learn more about the the evidence-based design here.

Ground floor lobby at 225 E. Chicago Avenue, in the heart of Streeterville and strategically placed on the campus of Northwestern Memorial Hospital to foster a even more collaborative learning and care environment with doctors and researchers at NMH, Prentice Women's Hospital and the Rehab Institute. The whales were donated by the Shedd Aquarium.  . More than twenty cultural organizations contributed to the kid-friendly design of the space. 

My honey at the Siragusa Lobby Elevator ready for the big tour. Thanks Philippe for making possible the work I do for the hospital and for supporting the CSB in many ways! You can't see it, but his tie is the CMH hand printed on a blue field. He matched our name tags!

Windows around the lobby feature discovery boxes created by the Field Museum

Follow the escalators (or take an elevator) to the second floor reception area where you can access the Emergency Department.

The ED entrance is to the right of this REAL aquarium (Thank You, Shedd!) which is visible from  the ED waiting area as well. The sculptures are meant to be climbed on.

A video collage wall by  Jaume Plensa, the artist who designed the Crown Fountains in Millennium Park.

The ED goes on forever. It is HUGE. It features triage space, urgent care, and trauma rooms. A CT space is designed to look like a yellow
submarine.

 Even the elevators are fun! Each one has a unique design. One even has buttons that when pushed make the sounds of bike bells, car horns, and other city street noises. The elevator bays feature photo art with animals collaged into Chicago landmarks

Mary Hess and I feel 6' tall in this elevator!

Operating Suites each have a mural designed to entertain (and calm) children. OR prep and recovery will occur in private glass-doored pods. Equipment in ORs is mounted from the ceiling to allow better movement in the room. And there is a robotic surgery capability in one of the suites!

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There's art EVERYWHERE. Some by kids (we didn't get photos of that) and some by  famous and generous Chicago artists. This artist did all the photo-collages for the elevator bays.

And, yes, there is a REAL fire truck in the hospital.  You can turn on the lights, steer, and honk the horn. No sirens, of course. Some local set designers built an old-style firehouse around it.  Philippe had a blast! Custom-designed fire truck cab donated by Pierce Manufacturing, 12th floor.

 Space for families to relax, regroup, cry, eat, rest. Including private kitchens, gorgeous views, work spaces, and more.

All private rooms, with day beds for parents, closets, cubbies for stuffed animals, private bathrooms and large flat screen t.v.s

The views. Need I say more?

The Executive Committee cuts the ribbon on the Children's Service Board Security Desk, 11th floor Sky Lobby.

A Lego model of the hospital. If negotiations go well, kits will be available for purchase in the Gift Store. The colored panel represent the windows whose light design will change periodically, and be designed by critically ill inpatients

Stay tuned for a link to an album of more pictures and more fun facts as we count down to Moving Day!

To learn more about the Ann and Robert H. Lurie Children's Hospital of Chicago click here.

A hospital this amazing takes a lot of heroes. If you aren't already, or if you're inspired to do so again, join the Heroes for Life campaign with a donation of any size that moves you. Be a part of this historic moment in the life of a world class hospital, Charlotte's Hospital!, and world class city.  Just click on the picture or here to learn even more about this AMAZING hospital and donate!

Charlotte's Corner: Charlotte's Earth Day Thoughts

Editor's Note: With today's entry, we introduce a new feature for Charlotte's Journey Home, "Charlotte's Corner." In this periodic column, Charlotte will weigh in with her own words and thoughts about what is important to her. She will regularly discuss books, nature, school, and other things that she wants to share. I've been blogging Charlotte's life since before she was born. She's decided that it is time for her to help author the story. I'm proud to type her words, but other than correcting some spelling and grammar, I promise to stand by and read along with you. Bravo, Charlotte!

"Nature"

an essay for Earth Day by Charlotte

Water: Water is dirty because of us! We have to save it!!

Trees: Trash is bad for them. We have to stop throwing trash and recycle!

Animals: Animals are extra important. They feed us, so we have to help them! Did you know that animals were made from the first fish, lion, cheetah, hamster, cat , dog, bear, etc? And, that those animals had babies? And, those babies grew up and had babies, etc.? Well, now you do. But, the big question is who made the first animal?

And did you know that if animals didn't eat other animals we wouldn't survive because we would only eat half of our healthy diet? And did you know that some animals are disappearing from the world like dinosaurs did? Some fish are. A lot of animals are, but you can help!

Here's what you do: You buy fish that is responsibly fished and farmed! Fish are at the bottom of the ocean food chain, sort of, and doing that helps every animal that eats fish and that is a good start!It helps almost every animal including sharks, dolphins, and even other fish! And animals that live on land like cats, bears, dogs, sometimes lions, etc.!

And did you know that cheetahs are not only fast runners, but they climb trees, too? And, the baboon runs on land as well as it climbs a tree?

Did you know that paper is made from trees? Did you know that trees make the air clean so it is important not to cut them down even for Christmas trees?

Animals need food and water to survive and some of the food is disappearing so the predator is too because it can't eat! And trees are getting cut down and that's bad for animals like giraffes and sloths because they eat leaves! It is really bad for sloths because they can't hang in the trees and rest! Same for leopards and cheetahs so it's REALLY IMPORTANT to not cut trees down! If you still can't understand why...it's because it makes animals that live in trees and eat leaves not live BECAUSE...they can't rest or eat! And they probably can't make other lives BECAUSE they're already into their first life! And that's bad because giraffes, sloths, maybe cheetahs and leopards would die!

Why? BECAUSE not only those animals would die, BUT the animals that eat these animals would die. Why? BECAUSE the predators couldn't eat their food ! Trash is also bad for them BECAUSE plastic bags could go into the ocean and get eaten by the sea turtles who thought they were jellyfish and ate them. OOPS! It was a plastic bag because the sea turtle would die. BECAUSE the plastic bag would poison it.

Bibliographic notes gleaned by editor in an interview with Charlotte: Charlotte learned about nature, the food chain, and the ocean from PBS's "The Cat in the Hat Knows a Lot About That," Scholastic News, "Ivy and Bean: What's the Big Idea?," her bilingual class at The International School of Boston, Mark Kurlansky's "World without Fish," and various dinner table conversations with Mom and Dad.

Photos: At top, Charlotte enjoys a gorgeous day on the Cliffwalk in Newport, RI.

At bottom, Charlotte chats with a gecko at Boston's Museum of Science.

But, she doesn't like hot dogs

Some of the ice cream actually gets in her, too!!

It's been a long time since I wrote about Charlotte and food. But it recently occurred to me that it has been more than 4 years since we had to connect the tube to her tummy and set up the Kangaroo machine, more than 4 years since we've dealt with projectile vomiting, medical supply delivery, and the associated anxiety of not being able to nourish our kiddo. It's been almost 4 years since we stopped logging calories and about 3 or so since we stopped consciously counting calories.

Charlotte eats. And eats. And eats. Occasionally the sheer quantity of what she eats astounds us: This morning's breakfast began with a toaster waffle, yogurt, and fruit. Then she had an English muffin. Then another toaster waffle. For lunch, she ate two helpings of butter chicken and half a naan at an Indian buffet, followed by chocolate brownie ice cream. On Saturday, while other children were eating hot dogs (Kobe beef on brioche, it must be said), Charlotte was slurping up New England clam chowder and Rhode Island calamari (spicy). She is adventurous with food, able to find something she'll eat on just about any restaurant menu.

Among her other favorite foods:

• Panko-crusted cod with chipotle mayonaise
• Anything with black beans (burgers; black bean and sweet potato chili; Brazilian-style black beans and rice)
• Thai red bean chili
• Lentil and artichoke stew
• Artichokes with garlic aioli
• Leek pie (made with Dijon country mustard, from The Greens Cookbook)
• Pasta Puttanesca (made by her friend Sarah's dad)
• Chevre and hard-boiled egg on challah
• Portabello mushrooms stuffed with spinach and ricotta (though she doesn't like spinach alone)
• Avocado, pineapple, strawberries
• Salmon, cooked about any way I can make it
• Swordfish grilled with salt and pepper; or with Thai marinade

And, of course, some old standards like PB&J, nutella sandwiches, mac & cheese (especially from Panera).

We're actually surprised she likes these last few things as she ate them pureed and over-loaded when we had to create extra-high calorie food for her.

Here's the thing: Charlotte was tube-fed to SAVE her life. She had been diagnosed with "failure to thrive." Post-heart surgery she didn't have the strength to eat enough. After five months of an NG-tube, her little baby cheeks were ravaged by the tape we used to hold it on her face. She managed to pull the tube out. And even at five months, she hated that NG-tube so much that she managed to prevent it from being inserted. It was heart-breaking, but necessary. We "decided" to have a G-tube surgically inserted to save her from the trauma of the NG-tube. It was one of the best decisions we've ever made.

So, you can imagine my reaction when I read the New York Times's piece, "Bridal Hunger Games" last Sunday. If you didn't see it, here's the gist: There are women so obsessed by being thin for their wedding day that they are willing to voluntarily have an NG-tube shoved down their nose into their stomach to provide only liquid nutrition. This "diet" allows them to lose weight fast. One woman lost weight too fast, so she took it out early. My heart does NOT break for her. And, there are doctors who are willing to use this life-saving technology to aid and abet these brides. I'm not sure if this is an extreme form of narcissism or a seriously warped view of beauty norms. Whichever it is, I was beyond appalled.

As a critic of popular culture, I plan to step back and look at how this reality (and the reality shows about losing weight) line up with/contrast the new fat-as-normal of shows like "Mike and Molly". What do these cultural phenomena say about beauty norms in the 21st century?

As a mom, I need to figure out what I can do to help my child grow up with a positive body image?

Right now, I don't know the answer to either question. But, I'm fuming a bit less about what that article reports. And, I am still kvelling about all that Charlotte will eat.

Flying on Paper Wings

Screenshot from Secret World of Arietty (2010) borrowed from CinemaSquid.com

About a month ago we took Charlotte to see The Secret World of Arietty, a lovely Japanese anime film based on the novel The Borrowers. I wrote about the film on Culture Bean and hope you'll visit that post.

When Charlotte returned to school after February break she learned that many of her friends had seen the movie, too. Thus began a month of "playing Borrowers" on the playground. I can't really say what this involves as I'm not privy to playground time. But, I do know that Charlotte often talks about flying as part of this imaginative play.

By itself, this is interesting because only one of the Borrowers in the movie "flies," really. He does this by holding a leaf over his head and catching the wind, gliding more than flying.

In any case, Charlotte and her friends have been inspired to find a way to fly. One of the boys has told them that they will need a jet pack. Charlotte recognizes that it might be hard to build a jet pack, but she did ask me for a cardboard box so she could get gas for the jet pack when we filled the car. I explained all the reasons why collecting gas in a cardboard box for a non-existent jet pack might not be practical. She was disappointed but not dissuaded.

The next day Charlotte came home wearing a belt made of paper and glued around her waist. This was, she explained, the belt to which she would attach her wings once she made those. She spent the next week busily cutting wings out of paper for herself and several friends. This consisted of cutting one edge of the paper into triangular-shaped fringe and leaving the rest of it rectangular. She glued her wings to the belt and wore it to school.

You can imagine my thought process:
--"Gosh, I hope she doesn't try to jump off anything high, thinking those things will really fly." (We talked a lot about this and I kept stressing her wonderful imagination, but the relative impossibility of a first-grader discovering the secret to personal human flight.)

--"Oh, boy, I hope no one makes fun of her."

--"Please, G-d, don't let anyone make fun of her."

--"Oh, please don't let that phone call be the school saying she's broken a bone because she jumped."

--"Please, I hope no one made fun of her."

And so on...

And, you can imagine my glee when the mother of one of her friends said, before a playdate, that she would keep an eye and make sure they didn't try to fly off the backyard jungle gym. What relief that another person's child was obsessed with flying! And what a relief that Charlotte wasn't running around the playground alone imagining all these things.

I LOVE that this movie has ignited Charlotte's imagination. Arietty is a character worthy of being a role model: She's a loyal daughter and friend; she has a moral compass; she's brave, a tiny bit reckless but smart, and sweet; and she's fashionable. You have to love a girl who rock can chip-bag clip as a pony tail holder, face off against a cricket with straight pin sword, and let a stranger put her on his shoulder.

I can't help, however, but recognize that this movie and its imaginative play has inched us into seven-years old, and begun to shape all the fears that I will have for Charlotte as she grows into a smart, sensitive, imaginative teen.

One day she will no longer believe she can fly on paper wings. I hope that day doesn't come too soon. And I pray she doesn't get hurt in the interim.

Charlotte Reads: Resurrecting a Blog Feature

Some time around when Charlotte was born, I picked up a copy of Esme Codell's book How to Get Your Child to Love Reading: For Ravenous and Reluctant Readers Alike thinking I would use it as a resource. You see, I was very worried my kiddo wouldn't love books as much as I do. And, like Esme, I believe that reading is integral to every kind of succes a child might have in life--educational, social, personal, spiritual, you name it.

I proceeded to devour Jim Trelease's classic The Read-Aloud Handbook and Jennie Nash's moving memoir Raising a Reader: A Mother's Tale of Desperation and Delight. They eloquently write about why it is important to read to your children; what lessons we have to learn from Oprah, Harry Potter, and the Internet (Trelease); and the anguish of having a child who doesn't click early with books (Nash). I gobbled up the lessons, prepared to sweat it out if Charlotte was a late reader, to be patient if she didn't read at grade level until age 8 or so.

I needn't have worried. On her second birthday, Charlotte picked up the sippy cup, looked at it and said "B," pointing to the letter b on the Gerber cup. She quickly learned her alphabet (listen to her read it here) and by the middle of pre-school was reading 3-letter words. By the middle of kindergarden, she was reading ahead of grade level in English and her teachers surprised me with an account of her reading 3- to 5- letter words in French. I didn't blog about it much because I didn't want to sound like a braggart. We were, however, contiunally amazed and constantly asking her teachers how to keep her challenged.

Looking back, I see that my blog notes that she mostly only sat still to read. I started a new feature called "Charlotte Reads" and posted a few videos. Here's one from November 2007. I wrote often about her favorite books. Again from November, 2007, #4 on the list of things I loved about age 2:

4. Love of books. She could read all day long. Today's favorites
are Charlotte Doyle's TheBouncing, Dancing, Galloping ABCs; K. C. Olson's Construction Countdown; and Jon J Muth's Stone
Soup.

And, I posted about some of our favorite characters like Iggy Peck, Architect (follow this link to hear Charlotte read Andrea Beaty's now-classic book) and Skippyjon Jones.

I still know those books by heart because I read them all dozens of time. Famously, we read Iggy Peck, Architect every night for more than eight months.

Why the trip down memory lane? Because tonight Charlotte read aloud to me, a chapter of My Father's Dragon, a children's classic by Ruth Stiles Gannett that I've never read. Her homework was to read a chapter. I asked if she'd like to read it aloud since that is what she does in her enrichment class. She jumped at the chance. I was enthralled by her expression, her fluency, and her confidence as she sounded out hard words.

I have read to Charlotte every day since I was by her side at Children's Memorial Hospital. I may have sounded crazy reading The New York Times and Fortune magazine to my infant, but read I did. Watching her learn to read was amazing. Seeing her grow into a joy of reading that led to her lying on the couch yesterday to read Ramona the Brave for an hour is awe-inspiring. And, the first time she sat on the beach and read last summer made me hopeful for quiet, restful beach vacations!

Charlotte and I (and you, dear reader) are so fortunate to be literate. To be able to read these words. Join us on March 7 as we celebrate World Read Aloud Day, bringing attention to global literacy challenges that leave 793 million functionally illiterate.

I'll be blogging here, and at Culture Bean, from now until then about read aloud adventures I've shared with Charlotte, my mother, and others. Feel free to chime in with your own stories--about a book that was meaningful to you, a favorite read aloud you heard as a child or read to your own child, or sound off about literacy and/or illiteracy.

And to think, I was selfishly claiming those 20 minutes each night to get a free cuddle and revisit my favorite books! How delightful that so much more grew out of it.

10 Things Having a Baby with a CHD Has Taught Me

I've been busy thinking about blogging, and not too busy blogging. Well, I've been getting ready to launch a new, not-Charlotte-centered blog. This blog will continue, of course (my brother might give me grief if not!), but I've got some other things to say.

For today, I'd like to share with you another blog, that of comedian Tommy Riles. His website, Life of Dad, began the day his first daughter was born and he and his wife found out that she had a CHD. Like Charlotte's Journey Home, Life of Dad began as a forum for updating his family and friends about Babs's struggle and recovery. It has grown into a premiere social networking community for dads, publishing articles by 30 writing fathers who each bring a different perspective to the "Dad Cave." Tommy has for many years been the warm-up comedian for the Ellen DeGeneres Show and early in the life of Life of Dad, he and his wife appeared on Ellen to raised awareness for our CHD kids. They are truly champions and he's really funny.

I know of Tommy because he has partnered with Francie and Brian Paul to raise money for Saving Tiny Hearts Society, a not-for-profit dedicated to increasing funds for research into the whys and treatments of CHD.

By having a child with a congenital heart defect, I've learned a lot. Not only about CHD, recovery, insurance, parenting, and striving for normal. I've learned that parents of CHD kids (and other complex kids) are extraordinary in their own way. Francie and Brian turned their despair into a fight--for Joshua's life (he's nearly 7 and quite a bruiser!) and the lives of the rest of our kids. Bab's CHD gave Tommy the impetus to communicate, use his platform and connections to raise awareness, and create a stable of "Daddy Bloggers." They are my heroes.

And, in this month of Heart Health Awareness, I hope you'll read the 10 Things Tom Riles has learned by having a child with a CHD. The original post is here.

With Tommy's permission, I'm posting the first three things as a bit of a teaser:

1. Congenital heart defects are the #1 birth defect worldwide. When my wife was 18 weeks pregnant with her, we found out that my daughter, Babs, had a heart defect. I knew nothing about CHDs at the time, but now I know that 1 of 100 babies has a CHD, and awareness is a necessity.
2. My daughter is the strongest person that I know. Babs survived open-heart surgery at three days old. She’s tough, she’s funny, and she likes to sing. She is one strong fighting Irish girl.
3. I’m stronger having known my daughter. Once I realized the strength that my daughter has, I had no choice to become stronger. Now I do pushups, sit-ups, and jumping jacks every day.

Read on at Life of Dad!

Tommy's post feels like a bit of a meme to me, so look for my ten things soon!

p.s. I'm happy to post in support of Ellen DeGeneres and her show. I like what she stands for. And, I'll shop JCP anytime!

Happy New Year!

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

Click here to Give Kids a Hand for Team Charlotte

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

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

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.