Monday, August 16, 2010

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

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

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

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

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

Until Saturday.

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

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

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

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

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

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

Thursday, August 12, 2010

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

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

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

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

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

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

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

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

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

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

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

Philippe and I weighed the options:

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

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

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

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

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

Friday, August 06, 2010

OT/DT Odyssey: Researching the Therapies

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

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

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

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

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

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

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

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

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

Floortime was a bit more difficult. My initial research led me to the website of the Interdisciplinary Council on Developmental and Learning Disabilities. Immediately, my warning bells started ringing—Charlotte has no disability diagnosis. In fact, Dr. London (at Rush Neurobehavioral) had talked about figuring out which of diagnosis code to use for insurance since there was no diagnosis of learning or behavioral disability or neuropsych problem. I am not in denial, folks. There isn’t a diagnosis.
I can’t quite as easily provide a simple, direct explanation of the DIR Floortime Model created by Dr. Stanley Greenspan. It is based on Development, Individual differences, Relationship-based approach to each individual child. Reading the website, I got a headache from the warning bells.
But, I take professional advice seriously. And, despite the fact that I felt that the practice that recommended Floortime might be working the up sell pretty hard, I looked for ways to learn more.

This led me to Amy Zier and Associates. Amy Zier is an Occupation Therapist in Chicago who is certified in Floortime. While her practice in Chicago is not contracted to our insurance, she responded quickly to my inquiries and we were able to attend a small seminar she hosted to educate parents.
During the seminar we learned one important thing: Floortime is good for ANY child, but not necessary for all. (In fact, after the seminar we thought that maybe some enterprising marriage counselor could incorporate it into a model for couples’ therapy!)
Amy described in her own words the basic information on the ICDL website. The program focuses on the six developmental milestones:
that every child must master for healthy emotional and intellectual growth. This
includes helping children to develop capacities to attend and remain calm and
regulated, engage and relate to others, initiate and respond to all types of
communication beginning with emotional and social affect based gestures, engage
in shared social problem-solving and intentional behavior involving a continuous
flow of interactions in a row, use ideas to communicate needs and think and play
creatively, and build bridges between ideas in logical ways which lead to higher
level capacities to think in multicausal, grey area and reflective ways. These
developmental capacities are essential for spontaneous and empathic
relationships as well as the mastery of academic skills. (I’m cribbing from the
website here.)
If you are curious, follow this link to learn more about the six developmental milestones.
Philippe and I were fascinated, especially as we recognized our own areas of deficit. The therapy itself is intense. It requires parent and child time with the OT as well as six hours (more or less) of daily at-home therapy.
For us, the bottom line was this: Charlotte does not have any behavioral or sensory disturbances that affect our daily lives. For instance, she does not throw tantrums that seem unreasonable or surprising. Most of the time, we can identify that she is pitching a fit because she’s hungry or tired, not because she is perpetually disregulated.
Considering each of the developmental milestones, we realized that while Charlotte might benefit from the therapy, she didn’t need it. Good thing, too, since Amy is the only certified Floortime therapist in Chicago and doesn’t take our insurance. I didn’t want to trek to the suburbs.

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

Thursday, July 29, 2010

More on the OT/DT Odyssey: Neuropsychology Testing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More to come...

Tuesday, July 27, 2010

More on the OT/DT Odyssey

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

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

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

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

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

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

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

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

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

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

We went back the next week and completed the test.

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

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

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

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

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

Sunday, May 09, 2010

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."

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!

Monday, March 08, 2010

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.

Wednesday, March 03, 2010

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.

Sunday, February 21, 2010

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!

Friday, January 01, 2010

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.