Pre-Op

The lead up to the pre-op appointment started in the most wonderful way. Charlotte’s classmates threw her a surprise party. While she was, I think, most thrilled with the gifts (especially an Equestria and Monster High Dolls), we were touched by the fact that the party was the idea of two of Charlotte’s classmates and the joy of the rest of them. The children put their hearts and souls into letting Charlotte know that they would miss her, that they will be thinking about her, and that she has an incredible network of support.

We spent the weekend playing with friends and generally not thinking about what was on deck for this week.

We also began a mindfulness practice late last week to practice breathing through fears, especially fears of needles.

This morning my friend Jeanne came to work with Charlotte, using an energy technique called EFT Tapping. Charlotte did as good a job as she could working with Jeanne, though she did lose focus once she realized that there were still crepes in the refrigerator. She did seem relaxed and ready for anything when we left the house.

Now, Jeanne and I realized that one tapping session and a few meditation sessions might not help her enough. But, Charlotte was willing and it was worth a try.

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I got a smile from her when I told her that Bubba was looking down from atop her head and smiling. I had to take this photo to prove it!

I wish I could say it worked miraculously. Sadly, no. Charlotte began to fall apart when it was time to change in to a hospital gown for the lung x-ray. The little tigers seemed babyish to her. Then the x-ray technician called her “sweetie” and told her she couldn’t hold Bubba during the x-ray. Charlotte’s dark side started seeping out. She was muttering, crying, on the verge of a meltdown. I snuck Bubba under her thumb and we got out of there as unscathed as possible.

She calmed down and seemed to set her mind to getting through the blood draw. Until we entered the room. I’ll spare you the details, you can get the general idea from the last time we did this. Truthfully, I’m sparing me the details. I don’t have the heart to write about this again. Bottom line–this time was a bit worse. We were better prepared; instead of a phlebotomist, we had a member of the IV team to do the draw. We called Child Life to distract. And still, Charlotte just couldn’t concentrate on hertools.We tried breathing. She didn’t want to tap, so I tried another technique Jeanne taught me, squeezing Charlotte’s finger tips while quietly talking to her. Eventually she said, “Mom, stop squeezing my fingers.” Sigh.

Eventually (maybe 40 minutes later?) the IV team member had to go to the ICU so she called cardiology and we went down to see the APN (advanced practice nurse) for our pre-op conversation. The nurse and Dr. Backer spoke while we went down and they decidedFullSizeRender-4that they could get the blood once Charlotte is under anesthesia tomorrow. It’s not ideal–it will add time to the procedure and the time that Charlotte is under anesthesia, but since they couldn’t sedate her today, it was the best we could do.

Maria, the APN, explained the procedure and risks and we asked a few questions. Then it was time to get lunch and head to Art for the Heart.

We got Charlotte to bed around 9:30 after a bath, watching Mirror Mirror and swabbing her whole body with special antibacterial wipes.

We are expected at the hospital at 6 a.m. tomorrow. We’ll keep you posted periodically. If we don’t answer your texts or phone calls quickly, please don’t take it personally.

 

 

Still Waiting

It has been brought to my attention by my dear sister that I was remiss on Friday because I did not update the blog after we got home from the hospital.  The quick skinny: The MRI went fine. We were home by 12:30 or so. I slept for more than 3 hours. Charlotte played on her iPad for the same time. Her throat hurt, but she had no adverse reactions to the anesthesia.

She did have a major reaction to the IV port that was still in her arm. While it was not a needle, she had the same meltdown about taking it out that she had about her blood draw in November. Without going into the traumatic details, I will say that she delayed her own departure from the hospital by about 45 minutes and I was exhausted afterward.

Now we wait…the doctors conference tomorrow and we’ll have news this week.

Helping Kids is Always In Fashion, Just ask Charlotte

I’ve been an absentee blogger for the past few months. On the one hand, that is a lovely and clear indication that Charlotte is doing well and has no imminent medical issues.

On the other hand, she has had the usual check ups (dental, back-to-school), the best summer of her life, and other adventures totally worth chronicling.  I’ve been remiss in reporting.

But, I’ve got a good reason–I’ve been extra busy co-chairing the 59th Gold Coast Fashion Award Show.  I’m humbled and honored to have been asked to take on this big job. The Children’s Service Board has, with this signature event as well as other endeavors, raised millions of dollars for Ann & Robert H. Lurie Children’s Hospital.

One of the board’s commitments was the Transit Team. I owe a special debt of gratitude to the Transit Team as they brought Charlotte to me for the first time when she was 12 hours hold, as they were transferring her from Prentice Women’s Hospital to Children’s. Little did I know that that first kindness came from the women whose ranks I later joined as an act of gratitude.

Anyway, the Gold Coast Fashion Award Show is just 10 days away. I hope you’ll consider joining us or making a donation or buying a raffle ticket.  The details are below and you can click on the image to donate or buy a ticket.

 

Thank you for reading for 9 years and counting.  I’ll be back soon!ielec invite

 

Happy New Year!!

Last night we spent some time talking about the things we liked best about 2013.  Number one on my list: Charlotte’s cardiac check ups were good and she required no further interventions.  After that, everything else was icing on the cake.

We are so blessed that Charlotte continues to go from strength to strength and that she has an amazing community of doctors, medical professionals, friends, and family to keep watch over here.

Thank you for being along for Charlotte’s Journey.  Along with her, Philippe and I wish you all a year of good health and happiness.

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Charlotte chats with her surgeon extraordinaire, Dr. Carl Backer.

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Charlotte and her cardiologist, Dr. Luciana Young, find the Team Charlotte tile on the Lurie Children’s Hospital Give Kids a Hand mosaic.

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I Promise to Blog Again…In the Meantime, Can You Help “Charlotte’s” Hospital?

A message from this once and future blogger. Not exactly a word from our sponsor, but a word about what we sponsor and what we are most grateful for.

As most of you know, when Charlotte was 6 months old I joined the Children’s Service Board of the Ann and Robert H. Lurie Children’s Hospital of Chicago. In helping the CSB raise millions of dollars over the past 7+ years, I have been fulfilling our commitment to give back to the hospital and doctors that saved Charlotte’s life. When you see pictures of Charlotte today, or have the chance to visit with her, it is hard to remember that she was gravely ill and that in her 49-day hospital stay there were several times that we were not sure she’d see her first birthday, let alone be planning for her ninth.

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As a member of the Ann & Robert H. Lurie Children’s Service Board, I am committed to ensuring that the hospital is a caring “second home” for kids during a hospital stay. Thanks to fundraising events such as the Gold Coast Fashion Award Show, the Children’s Service Board is only $50,000 away from reaching our $3 million commitment to pediatric surgery.  Your generous support and partnership help make it possible for Lurie Children’s Pediatric Surgery Specialists to focus exclusively on healing the smallest members of our community—our funds have enabled recruiting, retention of a dedicated interpreter, and much more.  

I hope that as the year ends you will consider giving a meaningful gift to Lurie Children’s and help the Children’s Service Board meet its goal.  No amount is too small. This year, it’s doubly important for me—I’ll be chairing our signature event for the next two years and want to be able to focus on whatever our new mission will be.  I’m a bit nervous about this new endeavor and promise to blog about it as part of Charlotte’s journey–she’ll be in attendance on September 19 (and you can be, too!).

The Children’s Service Board and Lurie Children’s strive to make Chicago the healthiest place in the nation for kids. Our specialists are capitalizing on their proximity to Northwestern Memorial Hospital, the Rehab Institute of Chicago, and Prentice Women’s Hospital to advance research to keep our kids healthy–research into congenital heart defects, pediatric cancer, simulated surgery, and much, much more. The more learn about the hospital, the more passionate I am. And if you’d like to learn more, or tour our amazing facility, just let me know.

Philippe and I thank you for your support throughout Charlotte’s journey—it has meant so much and will continue to mean a lot as she faces the inevitable challenges and further surgeries in her life. And I thank you for considering my request.

To donate, simply click on the image above or copy the URL into your browser.

 

58th Annual Gold Coast Fashion Award Show for Lurie Children’s Hospital

It’s that time….you can buy your tickets, raffle tickets, or make your donations for the Gold Coast Fashion Award Show at http://www.gcfas.com/

What is the Gold Coast Fashion Award Show, you ask?

Here it is:

The Gold Coast Fashion Award Show is the signature fundraising event of the Children’s Service Board, an affiliated organization of Lurie Children’s Hospital. The 58th Annual Gold Coast Fashion Show is scheduled for Friday, September 27, 2013 at the Hilton Chicago. Last year’s show attracted more than 1,300 guests and raised over $400,000 in net proceeds in support of the Division of Pediatric Surgery at Lurie Children’s Hospital.

The show includes individual store-sponsored segments from prestigious Chicago retailers and a competition segment where emerging designers compete for the coveted Gold Coast Fashion Show Award. Guests are treated to fashion through philanthropy as they view a fabulous display of elegant and high-end fashions in an array of categories from sportswear to evening wear.

Fashions from both the designers and retailers are presented in a fast-paced, live runway show. The competition segment opens the show and allows audience members to view the designers’ fashions before casting a ballot for their favorite. The designer who receives the most votes returns the following year to receive the Gold Coast Fashion Award and to present his or her fall collection. It is believed to be the only fashion honor in the country determined by the customer rather than the fashion trade. (from the website)

See you there!

Requiem for a Fish

This is Bob.

This is Bob.

In Memory of Bob the Betta

?? to March 20, 2013

 I was going to call this entry “Death Before Breakfast,” but I didn’t want to startle anyone.

We found our beloved Betta fish Bob lying on his side on the bottom of his bowl yesterday morning. I choked back tears as I quickly carried the bowl into the kitchen so that Charlotte wouldn’t see the body. Charlotte’s first reaction was, “Can we go to the store today and get a new fish?” Then, realizing that while a new fish would be nice (and she still wants one) it wouldn’t be Bob, she burst into hysterical tears and was nearly inconsolable. She told me that at recess she told her friends she wasn’t in the mood to play. Instead, she sat in the corner talking to her imaginary friend Purple Bubba and crying a little bit.

Today, though she seemed a lot better at breakfast, she went to the school counselor to discuss her sadness. We got the following report from the counselor: “Charlotte’s English teacher referred Charlotte to my office today for support around the loss of your family’s pet fish. We drew some pictures, wrote a letter to Bob, and brainstormed some ideas of what to do about her sad feelings and if she missed him.”

As Philippe wrote to me later in the day, this is both sad and awesome. Sad that our little girl is so distraught, awesome that she sought support, and beautiful that her school is such a caring environment.

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I loved Bob because he was cute and he was my first fish.

It had been clear to me and Philippe that Bob had not been well for a month or so. He’d gotten lethargic, wasn’t eating, and occasionally had something dangling from his belly. On Saturday he started nosing around in his gravel. That behavior was odd and concerning enough that I had Philippe research what I meant.  He found several articles stating that I meant the fish was trying to hide. We must not have read far enough because I now believe that Bob was looking for a place to hide so that he could die in peace.

Bob was our compromise pet. We had discussed getting a tadpole for about a year, with the idea of releasing a bullfrog at the pond near our house in Arlington. Once it was clear that we were moving, I had reservations. First, I didn’t really want to move an aquarium cross-country (two cats was hard enough). Second, I was unable to quickly find out if bullfrogs are native or invasive in Illinois and we didn’t want to harm the ecosystem.  We lit on the idea of a fish and Charlotte picked out Bob on her first day back to the Lycée.

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Dear Bob, I already miss you. Do you remember how you used to scare me when you slept on your side? And the bubble nest? It was all so funny!….

Philippe realized more than I did that in some way the fish was instrumental in her transition back to Chicago. He lived on her dresser in our corporate apartment and she talked to him daily. Looking back I wonder if he gave some kind of stability to that uncertain time (“Where will we live when we leave this apartment? Will our next home be?”) and made the plain, white room really hers. As we moved to our new house and lived (and continue to live) out of boxes, Bob offered Chicago continuity. And, perhaps, a feeling of control.

She tried to be responsible for feeding him, but the beginning of the school year, with its increasingly heavy homework load, threw her off. In the past few weeks, she’d gotten better about remembering to do it.

More than anything, Bob was Charlotte’s first pet. Sure, she has Miles and Esther, but they’ve been in the family longer than she has. Bob was hers—she chose him, she picked out his gravel colors and tank toys, and she was very proud of him. Often, she would leave Bubba sitting by his tank so they could keep each other company while she was at school. She was looking forward to celebrating her birthday with Bob looking on from the sideboard.

Bob and Bubba share a moment.

Bob and Bubba share a moment.

We were hoping Bob would have an average Betta lifespan and be with us for a year or three, and we’re all a little stunned. Phil and I feel helpless—we can take a sick cat to the vet, but what do you do for a sick fish?

In some small way, this loss will have a silver lining eventually. Last month I accidentally killed Charlotte’s spinach plant (don’t ask!). Now she’s lost Bob.  When our dear Esther-kitty leaves us, Charlotte will have had a taste of how hard it is to lose someone you love. And as much as we have our pets for their companionship and cuteness, as parents we agree that they are also instrumental in teaching responsibility and, sadly, loss.

So, Bob, I hope you’ve swum on to deeper seas and are in some beautiful reef somewhere knowing that a little family in Chicago mourns you. And I thank you for all that you gave us, even briefly. As Charlotte knowingly said (paraphrased), the depth of her sadness is directly related to how much you put into her life. May your memory be for a blessing.

2012 in review for the blog

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The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog and compared Charlotte’s Journey Home to a Dreamliner. I like that!

Charlotte’s “year in the life” will come later, or in the next few days.  First, enjoy this!

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,700 times in 2012. If it were a Dreamliner, it would take about 7 trips to carry that many people.

Click here to see the complete report.

Happy Halloween!

This is our second Halloween in a new neighborhood. Last year was fun — we ran into our neighbors and squared the block with them, then answered the door for the few dozen people who came by.This year was like no other Halloween I’ve ever experienced. The realtor who represented the sellers, and many of our neighbors, warned us us to have a lot of candy on hand, at lest 800 to 900 pieces.  They weren’t kidding!

.Charlotte as Hermione Granger (NOT Harry Potter)!

The crowds started coming around 4:30, first the tiny tots, then the elementary school kids, then the high schoolers. And, then more of everyone. The parents’ costumes were just as ingenious as the kids’. My favorite kids were dressed as a washer and dryer

Our next-door neighbor lit up the firepit, pulled some chairs around, and settled in. His kids, Charlotte, and the girls across the street ran back and forth visiting for a while. When Charlotte came in for a bath, her friend Karina helped me give out candy.  At times there were so many people on our stairs, I could barely keep up.

Charlotte and I took a break to trick-or-treat ourselves. We squared the block and were delighted to find that nearly every house was full of Halloween spirit, even those without children (like the realtor I mentioned above).  Neighbors joined together and had tables in front of two or three houses. My favorite neighbor costumes had to be Frankenstein and his Bride (and their son, Zombie Lincoln), and the Centerpiece (or as I called her “dinner at Ravinia.”

Hermione with Mr. and Mrs. Frankenstein

She never stopped moving, but check out this mom dressed as a centerpiece!

Oddly, after waiting for weeks for her favorite holiday and having what she declared was the “best school Halloween ever,” Charlotte gave up trick-or-treating after about 20 minutes. She hung out with the neighbors for about 20 minutes after dinner and then went to bed fairly early. We’re wondering if she’s still a bit tuckered out after her procedure last week.

Yesterday Charlotte asked me how the tradition of trick-or-treating came about. I was floored by the question so I looked it up on Wikipedia and History.com. It may come from a British and Irish tradition of going door-to-door singing prayers for the dead in return for treats (called “souling”). Other theories connect it to a Scottish tradition first noted in th late 1800s called “guising,” in which costumed people knocked on doors holding scooped out pumpkins and received candy, money, and cakes.  The term trick-or-treating seems to have come into modern parlance in the 1950s.  It was a great question and I had fun researching it.  Normally, you see, we go to the library and get a slew of Halloween books in October. This month was a bit hectic so no books and limited decorating. The question helped us both get more in the mood!

[p.s. Charlotte is doing fine post-balloon. I do have some more to say about the procedure, her discharge, and the hospital. Stay tuned.]