Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.


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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.


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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.