Category Archive

Zoe is so angry and frustrated with herself, and with us for reminding her all the time that she needs to use the bathroom, do exercises, listen to her watch, listen to her body, listen to us, follow the doctor’s orders. She wants to be normal. She wants to be able to trust her body. She’s so tired of this. I don’t blame her. She is so upset and really struggling to express why. We don’t get mad at the accidents, but we struggle to deal with the bad behavior that results from her feeling like she has no control over her body. This problem may have an explanation, but that does not translate neatly into a solution, and so far I think what we’ve done is completely overwhelm Zoe. It’s a mess.

Meanwhile, we can’t seem to find a physical therapist in the DC area who does pelvic floor rehabilitation, including biofeedback, with children. This person exists in Winston-Salem, so it would stand to reason that someone around here could do it, but we haven’t yet located that person. If you know of someone, please let me know.

This is certainly more than you wanted to know if you’re just about anyone. But I’ve heard from a few friends since my Compliant Colon post that their kids have been going through something similar. So for them, and for anyone else who’s medically inclined, I will continue.

I posed my questions to Dr. Hodges  and he said I already understood more about the condition than most urologists in the world. Last night at bedtime Zoe wanted to play a game she invented called “What’s My Job?” She was guessing what job I had and she had figured out it was a doctor. “Are you a urologist?” she asked. Good guess. (I was an eye doctor).

So here’s what Dr. Hodges had to say in clarifying my understanding of what’s happening in Zoe’s body:

It’s actually the rectum, which is the end of the colon, which is the end of the large intestine, that’s directly behind the bladder. When the rectum is dilated (enlarged) it “encroaches on the bladder, activating pelvic nerves that make the bladder overactive, and making it difficult to relax the pelvic floor muscles correctly, which then makes the bladder strain to void, also making it more overactive.” So the poor little bladder is just getting hit from all sides, basically.

When she has these accidents that happen approximately five minutes after she’s used the bathroom and seemingly emptied her bladder, it’s because her pelvic floor muscles weren’t completely relaxed so the urine did not all come out, even though she felt like it did. Her bladder is likely hypertrophied (thickened, from straining, like any other muscle), which may cause forceful contractions without warning, which also causes accidents.

At least I’m learning something.

Being in the children’s hospital on Friday reminded me of something I’ve been thinking for several days now, trying to put all this in perspective. Everyone’s got something to deal with. Right now among friends and family are people coping with cancer, diabetes, divorce, degenerative diseases, epilepsy, miscarriage, birth defects, sleep disorders, joint replacements, infertility, various undiagnosed childhood challenges, and probably countless other struggles I know nothing about.

I was blessed with a lovely and stable childhood from which I emerged relatively unscathed. It wasn’t until college that I faced meaningful defeats and witnessed plans going terribly awry. As an adult, and really mostly in the past five years, have I understood a little more about the universal state of suffering that the Buddha described. Still, I know I am incredibly lucky. I am healthy. I have a close, loving family and warm, wide, supportive concentric circles of friends. I have a thriving, fulfilling business. Although sometimes we feel poor we have more wealth than most people on Earth. I have a kind, empathetic husband and we are raising a phenomenal little girl. But we, like everyone, have our stuff to deal with. And so it goes.

You might not want to read about this. And I don’t particularly want to write about it. But I am compelled to do so. I am trying to figure out what to make of the seven hours of doctor visits we had with Zoe in Winston-Salem, NC on Friday to understand the cause of her bladder emptying problems. Everyone has asked me if we got answers and if we’re relieved. We did get answers, but I don’t fully understand them. And truthfully, I don’t think I’ll be relieved until the problem is actually resolved. There are many stories here. I’ll try to start with the headlines.

It’s No Accident: It’s Poop, Pressure, and Pelvic Floor Muscles

Zoe has a massive amount of poop backed up into her rectum and colon. Her colon is significantly enlarged because it is a compliant organ, meaning it expands to fit what’s inside, like a balloon, instead of retaining its shape and forcing out the contents. This kind of back-up can occur even if an individual is pooping every day. Doctors aren’t sure what causes poop to back up in some kids and not others, but apparently this problem is much more common than we’ve been led to believe.

The colon is directly behind the bladder. The pressure from the now giant colon on the tiny bladder has disrupted the bladder’s ability to function normally, or Zoe’s ability to sense when her bladder is empty or full. In a normal bladder, the bladder neck opens and closes automatically. It stays closed unless you use your muscles to open it and allow urine to pass through. The muscles you use to control the bladder neck are the pelvic floor muscles. Zoe’s pelvic floor muscles are weak as the result of being in a near-constant state of tension.

The entire situation is more complicated than I fully understand right now, and I have questions into the doctors (which I will post answers to, in case you’re just that interested), but I think this is the bottom line.

Can We Fix It? Yes We Can! (We Hope!)

Friday we saw pediatric urologist Dr. Steve Hodges, pediatric gastroenterologist Dr. John Fortunato, physical therapist Terry Sink. Based on the conversations with all three, the treatment plan for Zoe seems to be laxatives, exercises, and the potty watch. Step one is to get her colon and rectum completely emptied and keep them that way. The idea is that if they stay empty, the colon will return to its proper shape and stop storing poop there. If the colon is normal and not enlarged, there should be no more pressure on the bladder, so she should be able to empty it completely and feel whether it is empty or full and better understand when she needs to go. In the meantime, she needs to do various exercises to strengthen her pelvic floor and core muscles. Terry Sink is going to refer us to a physical therapist in our area who can do additional biofeedback sessions so Zoe can practice squeezing and relaxing her pelvic floor muscles. This should help her gain better control of her bladder function as well. There is no guarantee all this will work, but the doctors are hopeful that it will. If not, well, we’ll worry about that later.

Star of the Show: Zoe

Throughout all this, Zoe was a champ. She did not cry. She did not get upset. At times she got impatient. We brought many activity books with us. And snacks. By the end of the day she was rubbing her eyes and jumping up and down, eager to get out of a doctor’s office and play. But the most upset she was during the entire odyssey was on the way home when we were driving up Route 29 with all the windows down because our air conditioning gave out, and she was frustrated because her hair was blowing in her eyes. I pulled over and gave her an inventive hairdo, a snack, a drink, and turned on the music of her choice, and that seemed to do the trick. She was perky and cooperative and basically much calmer during all of this than I was.

The Origins of Our Medical Mystery Tour

About a month ago, I received an email from a writer in Oregon who is working with Dr. Hodges on a book about the hundreds of kids he sees each year with the same problem Zoe has. She had read our article in the Post and wanted to interview us about our horrible experience with the school system. She sent us two chapters of the book and we were stunned to discover that Dr. Hodges seemingly understood Zoe’s problem. He was the first doctor who had any fully formed insights into the cause of Zoe’s accidents, which we knew (but no one else seemed to believe) were not because she was not potty trained. We talked with Dr. Hodges, who was eager to begin treat Zoe remotely. He checked in with us by phone or email nearly every day for three weeks to see how Zoe was doing. I never imagined I would spend so much time talking about poop, especially with someone I’d never met who is not in my family. He is clearly passionate about his field and has tracked down research from the 80s explaining what he has figured out in his clinical practice, and even talked to the researcher to explore his hypothesis. Our pediatrician was open to Dr. Hodges’ idea and supportive of us working with him and helped arrange the x-ray he requested.

We decided it would be helpful to meet Dr. Hodges in person and he wanted to make the most of our 600-mile roundtrip visit, so he arranged the appointments with Dr. Fortunato and Terry Sink. He also connected us with a patient care representative, Julie Barnes, who was absolutely fantastic. She worked with us remotely to ensure we had directions to every appointment and an ice cream shop for afterward. She arranged for Zoe to play with a child life specialist in one of the Brenner Children’s Hospital playrooms for an hour between appointments. The child life specialist gave Zoe a doll. We also visited the family resource center where we played with a giant anatomical model (if Zoe doesn’t become a doctor after all this, I would be surprised) and got a free book. The people at the hospital–every nurse, every doctor, every technician, everyone–were exceptionally wonderful and helpful. Zoe had eyelid surgery a year ago at Children’s National Medical Center in DC, and while that was fine, and her surgeon was great, we received nothing that could be called special customer service or anyone doing anything out of the ordinary to keep us informed or make us comfortable. We are grateful to Dr. Hodges, Dr. Fortunato, Terry Sink, Julie, and Wendy (who played with Zoe in the playroom) for their care of Zoe and our family. It remains to be seen what will happen with Zoe. Dr. Hodges seems to think that it will take a few weeks to a few months for all this to work, but if it does, she should be accident free. At which point I will be relieved.

Last night Zoe came in our room at 2:30. I put her back to bed. She came in again at 3:30, terrified. She had woken up from a bad dream so disturbing that she repeated to me several times, “All I want to do is be awake in the daytime. I don’t want to sleep at night anymore!” We were intermittently awake until 5. She was more upset than I’ve seen her from a bad dream in a long time. During the night, she wouldn’t tell me what happened in the dream, but this afternoon she said it had to do with aliens who took control of a plane she was riding in.

Tonight at bedtime we talked about more pleasant and fun things she might dream about. I’m not sure if it’s because of a developmental growth spurt or her memory improving or some other factor, but almost every morning lately she has reported about one of her dreams. They have included:

• Daddy riding a giant slinky.
• Zoe playing a small accordion, then a larger one, then a small one again.
• Zoe planning a camping trip with Tigger which had to be moved inside because of rain. So they cleared the clothes out of one of Tigger’s closets and set up the tent in the closet, and then had lunch inside.

In no particular order:

Juxtapositions. From many vantage points throughout the city you can see unusual urban architecture, snow-capped mountains, and rocky beaches or shimmering water at the same time. I loved that there are beautiful landscapes everywhere even when you’re right in the middle of the city.

My daughter. She was a phenomenal traveler. She loved the airplanes (she had her first gum to clear her ears during the descent into Baltimore), she loved the hotels, she blazed fearlessly across the Capilano Suspension Bridge and the treetop adventure on the other side. She was up for any

adventure in any neighborhood. She made friends with eight- and ten-year-old sisters at a playground in Stanley Park. She loved the story of the Raven, a First Nations trickster tale that they broadcast on the miniature train we rode through the park.

Intergenerational mosh pit. We went to the the Vancouver International Children’s Festival on Granville Island and watched a performance by Quebecois folk and roll band Mauvais Sort. They asked for people to come down in front of the stage and dance. The request was answered by a group of preschoolers and toddlers and a group of tweens, who co-existed peacefully on the dance floor throughout the performance. The older kids danced and had a great time but were totally respectful and nice. I was amazed.

Unusual playground equipment at playgrounds overlooking the water–for once Zoe got to push Randy on something instead of the other way around. This is at Kitsilano Beach. 

The Regional Assembly of Text–a really cool store for font, design, and print nerds like me. They have a letter writing club once a month where they set out a bunch of typewriters and people come to type letters.

The Vancouver Aquarium–I’ve visited many an aquarium in my day and this was one of the coolest. I especially liked seeing the Beluga whales and the dolphin show. I didn’t like so much waiting in line for the 4D movie only to have Zoe crying the first minute of the film when we were spritzed with water to feel like the whales were splashing us and we had to leave the theater. Oh well.

Slickety Jim’s Chat ‘n’ Chew–a fun restaurant with an awesome name and amusing menu. The food was good too.

Kidsbooks–the best kids bookstore ever. Wish we’d gone earlier than half hour before it closed for the day.

Haida art–animals drawn or painted in the style of the First Nations people indigenous to the region that now includes Vancouver.

Shore 104.3–a fun radio station that plays music I actually like listening to, or introduces me to new music I happen to like. There is no radio station like this in the DC area.

Bloedel Conservatory in Queen Elizabeth Park–colorful birds flying around amid tropical flowers in a geodesic dome surrounded by a fountain and people doing tai chi and a wedding. What more could you want? Our trip was fantastic and, after a week back at work, I wish we were still there.

Lately I feel like my life is like a video game where you have to add people or animals to either side of a scale or the mast of a ship (yes, a video game for young children) to keep it balanced or prevent the ship from sinking. Something bad happens, then something good happens. I guess that’s what keeps me from sinking too. While we would all hope for more good than bad, we know life’s not like that.

Here’s what’s been playing with my emotional equilibrium in recent days.

I hired a handyman who came today and repaired a number of broken things in our house. He accomplished all these tasks that had confounded my husband and me for weeks, months, or in some cases, years, in less than two hours. On the one hand I was frustrated that it took me so long to get someone out here, but I’m glad I finally did get the things fixed. You’re welcome to come over and plug something into our outlet, sit on our bed without it breaking, use all our sinks without them flooding, dry your hands on a towel without collapsing the drywall, or sit on a toilet seat that doesn’t wobble.

I am disappointed that I didn’t get a substantial writing project for which I submitted a proposal, and that one of my largest clients is out of money (hopefully temporarily). The former was discouraging, but not surprising, since I didn’t think I had exactly the experience the organization was seeking, and the latter sent me briefly into a panic-induced flurry of marketing. The good news is that the process of creating that proposal made me rethink the way I work and helped me realize I haven’t been charging the right fee for some of the work I do. I also made a new contact in the local education arena, where a lot of my clients are. More good news is that, while conducting an interview today for this financially distressed client, I had the opportunity to catch up with a former colleague, also a consultant, who said she works with many groups that need writing and social media help. So I was able to pitch my services to her.

There’s always Glee. Despite my sister’s frequent pronouncements that the show is ridiculous and she will never watch again (and then, of course, she can’t help herself and tunes in), I am still a loyal fan. I have watched every episode and downloaded almost every song. I like the characters. I love the music. And I always laugh at the one-liners. Glee never fails to cheer me up after a bad day. Next Tuesday is the season finale and I know I will be sad when it’s over. Reruns are not the same.

Everyone I know seems to be buying a new house or having a new baby. While we would very much like to do both (certainly the baby more than the house, although having a baby would definitely make the house part more urgent) and haven’t been able to so far, I am thankful we have a house. We live in a great community. We have enough rooms for everyone to sleep, eat, play, work, and pee in. There’s a new shopping center featuring a super-Giant opening up down the street from our house next month. Our house has not been flooded, like many along the Mississippi in recent weeks, or blown to bits, like those in Alabama and elsewhere during recent tornadoes. We have a house, and not everyone does. And we have a phenomenal child, and not everyone who wants one does.

Which brings me to Zoe. While the stubbornness inherent in four-year-olds is clearly manifest in Zoe, and the refusal of her bladder disorder to abate continues to frustrate us, she is a wonder. I marvel at her compassion and sweetness, as she takes every opportunity to give me hugs and kisses and frequently wants to rub my back to make me happy. Yesterday at soccer she was focused and engaged and didn’t take any extra water breaks. The coach said Zoe’s ball control was impressive! This is the first soccer practice in which she appeared to be paying much attention at all to what she was supposed to be doing. The other night at my favorite taco joint Zoe discovered that she loves black beans and has been asking for them ever since. A few days ago after a babysitter left, Zoe said they’d been playing day care with her dolls. While I felt a pang of mommy-guilt that day care has been such a significant part of Zoe’s experience that she incorporates it into her imaginary play, I am thankful that she has become so adaptable and is glad to meet and play with new babysitters. Day care is the reality for most families I know, and we’ve made sure Zoe’s caregivers were kind and compassionate, and she’s learned something from all of them. Zoe is always excited about going new places, making new friends, and trying anything for the first time. She’s a role model for me in that way, and reminds me of the right attitude to have in life. I’m also proud of her for volunteering to part with several of her stuffed animals so we can send them to kids who live in war zones, orphanages, or have experienced disasters, to provide them with something soft to hug. She’s a good kid.

Zoe has a Berenstain Bears book called Count Your Blessings, in which the bear cubs are scared during a thunderstorm and reflect on the relative importance of family versus material things. Somehow Zoe conflated the message about appreciating what you have with the method for determining how close a thunderstorm is. For the past few days when it’s been storming, she’s said, “Let’s count our blessings!” And then starts to count off after she hears thunder. I explained the difference between counting thunder and blessings. I think she got it. But we do count our blessings. Every night at bedtime we each share three things we’re thankful for. I’m trying to cultivate that feeling of gratitude in her, but it’s always a great reminder for me of how lucky I am. On balance, I’ve got everything I need.