Q & A with Dr. Levitt

Q & A with Dr. Mark Levitt

November 30, 2011

7 p.m.

Dr. Marc Levitt, Director of The Cincinnati Colorectal Center for Children, will be holding an online Q & A relating to fecal incontinence due to Spina Bifida, and he will be explaining the Bowel Management Program he has designed to battle this difficult problem.

RSVP: eventbrite.com/event/2504065728

My favorite part of a "holiday" that I don't like

The Karate Kid, Rocky, a butterfly, a snow princess,
and a moody teenager doing his homework on the stoop.

Something melodramatic by Trans-Siberian Orchestra filtered through the speakers as Esther-Faith crawled to the playroom. She hadn't finished her white hot chocolate. She didn't even eat any of the candy she collected from the neighbors. Tim watched as she gingerly crawled to the middle of the floor, put her feet underneath of her body, and slowly stood up. It took many tries. But without the assistance of any of her equipment, she stood up.

And then, she just stood there, watching her reflection in the sliding glass door. Her cousins and brothers ran around her playing, laughing, and enjoying the chaos of the night. But she just stood. Occasionally she lost her balance. She would teeter forward or back. Sometimes falling all the way to the ground with a thud. But she always got herself back up to standing.

And then, ever so slowly, she moved her arms to first position. Holding them still in front of her body, she waited for her balance to catch up. Then, gracefully, she stretched her arms out to second position. Tim stood next to me in the dining area. Two of the three boys had heaped more sweet and sour noodles into their bowls. Auri was taking more sips of her hot chocolate.

Watching her own movement in the reflection of the glass, she slowly and gracefully set her arms into third position. Then fourth. And finally, fifth. Just before losing her balance and crashing to the floor again.

Unaware that we were watching, in an awkward gentle motion, she put her feet back under her body. Willing her orthotics to do what she wanted them to do. She slowly and comically got to standing again.

Already brimming with emotion of tough choices and hard decisions, I grabbed my sister's arm and started to cry. Tim grabbed the camera and moved into the play room determined to capture her remarkable tenacity on film.

She moved slowly but fluidly through the arm positions of the five basic ballet positions again and again. Tim knelt in front of her encouraging her when she fell or helping her focus when her balance threatened to interrupt her practice.

Esther-Faith will start real ballet in January. Actually, all three will start ballet in January. I've been searching for a few months for an dance studio that will teach my daughter ballet without putting her into a "pity" class or just appeasing my request in the name of compliance. I want her to learn how to dance. For real. Because SHE wants to learn how to dance. For real.

So, I contacted a few dance studios. Dozens maybe. I heard "no" a lot. I heard "we've got a wheelchair class" a lot. I heard "have you tried such-and-such" a lot. And I got tired of explaining that I wanted her in a class with other children learning ballet. That I wanted her to work. That SHE wanted to work. That she loves to dance, and I want to give her the opportunity to learn to dance.

Eventually, I found a well-established studio with an adaptive specialist who would be available to help Esther-Faith learn to the best of her ability. They never offered a different class. They didn't tell me "no." And most importantly, they understood that Esther-Faith wants to be a ballerina, but that it might just look a little different.

They are excited to have her. She is excited to go.

When we talked about Esther-Faith taking "real" ballet classes, Isaac decided that he would also like to take ballet in addition to more tap. And then Isaiah, the teenager, said he wanted to take ballet, too. So in January, all three of my children will begin ballet. At three different stages in their lives, and for three different reasons.

But really, Esther-Faith's education has already commenced. She has started memorizing the vocabulary. Pas de bourrée. Pirouette. Pas de chat. She often convinces her dad to lift her into the air. She gets books about ballet from the library.

And she practices.

It is more difficult for her. More strenuous. More work. But I think, also more beautiful. Because I know what it takes for her to even stand at all, let alone stand in position. I know what it takes for her to move her body a certain way, let alone do it gracefully. I know what work it is for her to just try.

Eventually, I moved to the play room, too. And so did Auri. The girls moved through the positions together. Auri grabbing Esther-Faith's hand at one point to keep her from falling. Convincing Daddy/Uncle Tim to set down the camera and lift them both into the air.

As they danced, I moved slightly away. The music was loud. They were moving their bodies. Dancing. Playing. Enjoying the evening and each other. And she did it again. After months of not, she took three tiny steps into my arms.

Those positions. Those smiles. Those steps. They make my heart so happy. So full of joy. So full of hope. She may never play Clara or Cinderella or Odette. But she will dance.

And it will be amazing.

Celebrate

I was quickly scrolling through the "United by Spina Bifida" and the "Take That Spina Bifida" groups on facebook before I had to turn my attention to homework and nighttime routines. I get maybe five to 10 minutes a day to catch up with people who I consider friends and co-travelers on this journey.

Tonight, I saw post after post after post of babies, children, and adults doing things that they were cautioned (and some told outright) wouldn't happen. Adults blowing off steam doing something they love. Children standing by pumpkins. Babies beating the odds.

And I was immediately moved to tears.

It doesn't take much. But what struck me was that I was looking at photos of children and parents doing normal things, but when I really looked, I realized that these normal, everyday experiences were anything but. Because watching your child walk into a field to pick a pumpkin when you thought he wouldn't walk is worth celebrating. Because watching your friend who has been through dozens of surgeries give birth to a baby is worth celebrating. Because realizing that a baby that was close to death two weeks ago is thriving today is WORTH CELEBRATING!!

I know it is Spina Bifida Awareness Month and that there is a lot of educating going on, but I think there is even more celebrating. And I love it.

An Easy Spina Bifida Awareness Project

I love seeing everyone's ideas for spreading awareness during Spina Bifida Awareness Month! Here's my little idea. It's quick and easy, and if all of us did it, it could reach a lot of people. Let's all send a "letter to the editor" of our local newspapers. (See letter below.) We can't control what kinds of stories papers print, but they usually print letters to the editor as long as they fit the guidelines. If you receive your local newspaper, you will see instructions for submitting your letter. Or you can do like I did and go to the newspaper's web site and figure out how to submit a letter to the editor from there. Start by looking under the "Contact us" or "Opinion" sections for instructions. Letters need to be kept pretty short so the paper can publish it, and so they won't cut it as much. You also must include your name and contact information, or they won't print it. To make this easier, I have written a template letter, below. Feel free to change it if you wish, but remember to keep it short. Just copy and paste this letter into the newspaper's form or in an email, and remember to fill in your contact information at the bottom. Subject/Headline: Learn something about Spina Bifida in October To the Editor: October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States. What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges. What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70 percent by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin. What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be. What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different. If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org. Full Name Address E-mail address Daytime phone number Join in the Facebook event to report back with which newspapers you submitted your letter to!

https://www.facebook.com/#!/event.php?eid=258191650891471

**Calling All Spina Bifida Friends/Family!!**

For many, SB Awareness means promoting possible preventions and making sure every woman of child bearing years is on the folic acid train. Which is fine in some ways, but not really to us! You see, Gretchen and I were amongst those that did everything right during our pregnancy and we still have a child with Spina Bifida. So many times we see those campaigns and ads, and to us, they feel like they are pointing fingers. That is NOT what Spina Bifida Awareness is about!

To us, Spina Bifida Awareness is far more positive and inspiring! The darkest part of our Spina Bifida journey was the days and weeks after diagnosis. There are SO MANY unanswered questions, so many unkowns, and so much false information given (even at times by doctors!) that this time was a corridor of darkness. Our hope is to bring inspiration & hope to those walking in that corridor. We hope to share the knowledge that people with Spina Bifida are PEOPLE with wonderful, full, blessed lives. Our prayer is to bring HOPE to each person, hope that even though this is not the path you would have chosen per say, it is a path worth journeying on.

To do this we need the help of our Spina Bifida family, and this is where you come in!!!

Each day of October we want to share a story of hope, inspiration, validation, overcoming difficulties or accomplishing victories from our Spina Bifida family. Also, we would each like to do a "Day in the life of" feature, once a week on our blog! (BTW, if you don’t know us, then you might not know this, but just living a life that SB touches, makes you part of our SB family!) We would LOVE to have you send us a story and a picture to go along with it that you think would further this cause of Spina Bifida awareness. Each day of October we will post one, and through this project pray, we bring the awareness that goes so much deeper than folic acid and prevention (and please hear us, those are important, but they are not the whole picture!)

If you would like to be part of this project please send an email to simplysoares@att.net or trw0224@gmail.com that includes:

~Your name, and a little bit about how Spina Bifida touches your life (Do you have it? Are you a parent of a SB child? Are you a Grandparent? Does someone with SB touch your life regularly and you feel lead to share?)

~The story you would like to share.

~A picture or a few pictures to accompany the post.

~A link to a personal blog or web site if you would like it included with your story (no product or sales sites please!)

~An email for us to contact you at.

We would love to hear from ANYONE whose life is touched by Spina Bifida. We want to include as many views as possible. Are you an adult with SB? Are you married to an individual with SB? Are you the coworker, pastor, employer or dear friend of someone whose life is touched by SB? Are you the grandparent, aunt, uncle or cousin of a child with SB? Are you the sibling of someone with SB? We would love to hear your story! I think you get the picture… We want to hear it all!

If we are blessed enough to receive more than 31 stories, we will continue to feature the stories on our blogs, weekly until they have all been told!

These stories will be featured on http://simplysoares.blogspot.com/ and http://atalw.blogspot.com/….. until they have all been told! (and how cool would it be if this just went on and on and on??)

Please participate with us! We would love to hear from you!

-Gretchen Soares & Tiffany Whalen!

Long (and promising) day at clinic

Our check-in time for clinic was 8 a.m.

Mimi came over to see the boys off to school so we could head to the hospital early.

Earlier in the week, our appointments were confirmed. We would see the social worker, urology nurse, neurology nurse, occupational therapy, physiatrist, and some others. We also found out that her renal ultrasound (we have one almost every clinic appointment) was scheduled for 3 p.m. From the outset, it looked like it was going to be a long day.

Once we got to the hospital, got checked in, and started the process of answering what feels like 1000 questions about the last six months of Esther-Faith's life, we got word that there was a cancellation in ultrasound and Esther-Faith was going to have her renal ultrasound at 9 a.m. instead of 3 p.m.

Sigh of relief.

BIG.

So, 30 minutes from her (new) appointment, we pushed fluids. She needed a full bladder to get good scans.

Some folks who we were not scheduled to see stopped in for social visits or just to catch up. One of those people was Brett--the wheelchair tech. Not only is he AWESOME at his job, he is also just a great guy. We shared books we've been reading. Our goals for Esther-Faith. She shared how much faster she wants to go. So, Brett went to his car and got an ultra-light, multi-purpose (can be used for every day or racing) PINK wheelchair for Esther-Faith to try. It did not have a seatbelt or tippers.

She loved it. L.O.V.E.D it.

Here she shows off her wheelie skills for Brett.

While Brett retrieved the fancy, new wheelchair, Esther-Faith and I headed to ultrasound.

The ultrasound tech was SUPER, VERYMUCH, ULTRA thorough. Don't get me wrong, I appreciate thorough. But seriously, they're not allowed to tell us anything, Tim was waiting back in the clinic room, and the minutes were dragging into an hour. Picture after picture after picture. Not by me, after the first couple of minutes, I forgot I had the camera. I just stared at the black and white screen-- not completely ignorant of what I was looking at, but still more confused than sure. I asked annoying questions. (I know, because she kind of rolled her eyes at me.) After a (really) long time, she gave me a catheter to empty Esther-Faith's bladder so she could get post-void pictures. Some more time (and lots more pictures) later, we packed up and headed back to Tim.

You'll never guess who was waiting when we got back... NICK!

Nick (who makes her orthotics) is Esther-Faith's favorite person at clinic. She thinks he makes a great dance partner. And in the morning when we were getting ready to go, she said she wanted to see Nick "first and last." In other words, she wasn't willing to fit anyone else into her busy clinic schedule.

After Nick, we met with the OT, the developmental pediatrician, the neuro-psych doctor, the pediatric resident, the urology nurse, the physiatrist (and her crew), and the neurology nurse. She hid from more than a few of the doctors.

I think one of the reasons Esther-Faith has never met a stranger (and why we're having such a difficult time teaching her stranger-danger) is because of appointments like this. Where there are lots of the same doctors she sees from clinic appointment to clinic appointment, but even MORE that she'll see once in her life, but that we ask her to allow to touch her feet and legs, check her shunt, ask her personal questions, and force her to be polite and accommodating.

I get it, they're learning to be the doctors of tomorrow, but for today, it seems so contradictory to tell her to be wary of strangers--oh but wait, not these ones. Or those ones over there. So, I'm left with questions about how to teach her stranger-danger while learning to trust the right people.

Some good news... and some great news.

The good news first: Esther-Faith will be participating in a clinical trial that will--over the course of a year--test for markers in urine that indicate a serious infection. She will also be testing a new, single-use (but more expensive) hydrophilic catheter for the duration of the year to determine if the incidence of UTIs goes down. Her catheters will be supplied (yay) and she'll have her urine tested periodically. We're all about finding new products that will help other SB patients!

The GREAT news: After talking to the neurology nurse about her symptoms, undergoing some simple tests, and understanding better what we're dealing with, the neurology nurse said that Esther-Faith is NOT experiencing increased tethering of her spinal cord! All SB patients have some tethering (it's the nature of the beast), and some will require de-tethering surgery and some will not. Currently, we are in the WILL NOT category! (Can I get a whoop-whoop?!)

Things can change fast or slow, and we're still learning, but even though it was one of the longest clinic appointments yet, we walked away with eight prescriptions, an appointment for followup testing with neuro-psych, an appointment for wheelchair clinic, and a script for an eight-week OT session, but feeling positive and reassured! (If not a little apprehensive about a racing wheelchair!)

After a quick lunch out, we took Esther-Faith to her favorite destination (Build-a-Bear) for a new friend: SNOOPY.

Take THAT Spina Bifida!

Guess who decided to move just a few days before we put heavy casts on her legs!?!! And she did it when Mommy wasn't home, the little booger. I can barely watch this without crying my eyes out.

I wish I could describe the overwhelming sense of gratitude my heart feels, but words could never do it justice. I am so very, very proud of our rock star, and I am so very, very thankful for a God who answers my prayers.

I'll let the video say the rest.

~Lisa (@ Heaven Sent)

First place

This past weekend was very busy at the HennHouse. Walk, Run, and Roll. Soccer game. The zoo. Company. Papa's 60th birthday party. Training. Work for mom. In addition to the "normal" stuff we do.

At the Walk, Run, and Roll, Esther-Faith placed FIRST among the rollers. We're super proud of her. Although, she's not really sure what the fuss is about. She likes to go fast. And fast she went. Sometimes holding onto a hand. Sometimes propelling herself. Sometimes doing a wheelie.

The point is, she had fun. First place or last. She had fun.

And we felt so loved to have so many of our friends and family--some in person, some in spirit--supporting an organization that means so much to us.

What about you? Does your local organization have a Walk, Run, and Roll? A Walk and Roll? Any kind of active fundraiser?

I would LOVE to create a post with all of the dates and locations of the races around the country. I think my 14-year-old son and I might just start to travel to run them!

Hanging out with Coach Ryan.
Esther-Faith loves Coach Ryan.
But when pressed, she will still tell you
that she loves Kate more.

Faster! Faster! Faster!

Isaiah ran the 5K in 26:23.
Then he left immediately and played in a soccer game.
I don't think that child EVER gets tired.

Loving on her boy Eamon.

Bagels after the race.

Her preschool friend Nathan.
She was SO HAPPY to see him.

Choosing her first place prize.
A stuffed puppy.
She named it "Pony."

Aunt Kristen got to come to the race this year!
Esther-Faith convinced her to run across the finish line with her.

Take THAT Spina Bifida!

In the Spina Bifida world, we have a saying. It's said any time a kid takes his first steps, or smiles after waking up from a surgery, or learns to do a backflip in a wheelchair.

TAKE THAT SPINA BIFIDA!

You see, we aren't the type that sits around feeling sorry for ourselves or for our kids. Yeah, sometimes we feel sad for a little while, but we reach out to a friend to pull us back up, and then we get mad again.

TAKE THAT SPINA BIFIDA!

We're not taking Spina Bifida lying down. We're not accepting what the "experts" tell us. We are not letting Spina Bifida define us.

TAKE THAT SPINA BIFIDA!

That's why we have made a T-shirt with that saying. To remind us that Spina Bifida isn't going get the best of us--we're going to fight back, kicking and screaming.

Want one? Join the movement! TAKE THAT SPINA BIFIDA!

True Beauty

One thing I used to mourn when I was pregnant with Toby was how different Gracie's life would be. When we first found out we were expecting we were excited for us as a couple, but we were excited for us as a family more. Gracie would have a sibling and being only 15 months apart would seem to have to guarantee closeness. I pictured days of playing, park visiting, running and all kind of things.

After the dreaded diagnosis day I mourned different things and for different people. But man did I mourn for Gracie. I cried and cried about how different her life would be. How she would have to always be second. How his needs to a degree would always come before hers. How long I would be away from her. How much Toby would need me and how much she would have to grow up.

Parts of what I mourned are true. She did grow up faster. She deals with things as Toby's sister other kids dont even think about. (just the other day she got a chunk of hair pulled out because her hair got stuck in tobys braces when they were playing) She doesnt get to play the same way that some of her friends get to play with their brothers and/or sisters. She does have her mommy taken away more often for doctor's appointments, therapists and things. She deals with more stress when mommy and daddy get stressed about something coming up in Toby's life.

Toby is toby and man we love him, but he's not the easiest brother to get a long with.

And their relationship is lots of love with a little hate mixed in.

But I write this post not to share the woes of Gracie's life. I'm sure I havent even tapped the surface of what goes on in her head with everything. But I write this post to share Grace's beauty.

Toby life has made her more beautiful. Toby has allowed Grace to learn unselfishness faster than I could ever teach her. Toby has taught Grace about serving others. Toby has taught Grace patience. Toby has taught Grace the meaning of true love through tough times. Because of Toby Grace is who she is today. Toby has helped shaped Grace. He has helped make her beautiful. Her spirit is one of the most beautiful that I could ever describe. Toby's life has enabled Grace to learn life lessons few adults truly understand.

I look back at my tears for Grace and smile. Yes sometimes the tears still come, yes sometime its hard on her. But there is a smile through those tears now. (which isnt it almost always that way) Grace is beautiful beyond belief not because of her outward.....but because of everything that is within her.

This post came to my mind and these thoughts more clearly than ever before. For the past week we've been buckling down harder on Toby's back brace and leg brace. Well every morning Grace goes straight to his room and takes it off. I've never asked her to, Toby's never asked her to. She just does it. She gets in his bed and without a word starts to unstrap all the straps. She loves her brother and the older she gets the more she understand that things are harder and more difficult in his life. Today I snuck in and took a quick shot of her. I love this girl.

I hope that as you might be in different stages of this journey that you will remember how our children's lives truly make us and the people around us have true beauty.