World Clubfoot Day #2

Today was a special day, June 3, World Clubfoot Day. I never knew I’d care so much about Clubfoot. Now, I can barely remember a day where I didn’t explain what Clubfoot is, tell someone about my son being in casts from four days old, or share about my family’s adventure in Iowa (yes Iowa). Iowa is the land of Oz for Clubfoot in case I haven’t told you lately. Dr. Morcuende is the wizard as far as I’m concerned. Dr. Ponseti was the first wizard, but he was mortal and passed away. Today, June 3, 2014 Dr. Ponseti would’ve turned 100 years old. I wish I’d met him, but I’m also glad that my Clubfoot superhero was born later, born in this time of social media and insta-communication. He’s better off. I’m better off.

Everyday my mind races. If mind racing burned calories I’d be about 115 pounds and have six pack abs. I stress about proper Clubfoot care, boots, bars, sores, e-stim, physical therapy, stretches, etc. I look at my son’s foot more than I look at his face. I drive myself crazy over it, but when I do look at his face he’s usually smiling or laughing. I’m so lucky to be his mom because he puts my life in perspective. My non Clubfoot daughter does too. Today Maven wished everyone we saw a “Happy Clubfoot Day!” Family members and friends posted on Facebook about Seager’s Clubfoot Journey. Parents from all over the world celebrated Clubfoot. The pictures and stories were all so unique yet so intertwined. The joy it brought me to see all of the pictures and words is unable to be fully expressed.

Presently I admin a group called atypical/complex Clubfoot on Facebook. I started it nearly a year ago and now the group has over 450 members. I am grateful to “know” each and every member. https://www.facebook.com/groups/423413504439569/

In further exciting news, I co-admin a page called Clubfoot Journey (find us on Facebook or at http://www.clubfootjourney.com) As of today we are a Non Profit!! We are recognized by the federal government and already helping Clubfoot parents, adults, and children worldwide. We’ve only just begun our Clubfoot Journey, but even the longest journey begins with just one step.

I told Seager’s physical therapist that today would’ve been a great day for Sea to start walking. He didn’t, but he’s getting closer everyday. I’m so proud of my son. He made me part of this Clubfoot “club” and I wouldn’t trade this life experience. His strength and resilience make me stronger than I ever knew I was.

Last year on World Clubfoot Day I was trying to figure out the logistics of a 19 hour drive to Iowa with my two children under the age of two. We made it and lived to tell our story. This year, I am in a better place. Winston Churchill said “If you’re going through hell, keep going.” – I’d add to that, one step at a time.

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Foot Feat

Not all things are created equal. We all know this. Doctors included, parents too. I’m not claiming to be the best mom. What I do claim to be is diligent when it comes to my son’s Clubfoot. He’s 11 months old and doing so well. I don’t want to jinx it!

Why’s he doing well? Because I’m diligent. He gets physical therapy two times per week. I put e-stim on his leg for 30 minutes most days. He wears his boots and bar (b&b) 15 hours per day. The road has been bumpy. I’ve had to research, argue, and travel (to Iowa) for proper care, but I did it. If I hadn’t, I’d regret it every day. If I saw my son limping or wearing different sized shoes, I’d always wonder if there was something more I could have done.

I see pictures of mistreated Clubfoot kids everyday. I do my absolute best to helpfully guide families to Iowa. Yes Iowa. No, there’s not someone just as good in Manhattan. Not Ohio, not Idaho, Iowa. Yes, My husband and I drove our family 19 hours away from New York to Iowa. We stayed at the Ronald McDonald House in Iowa City, Iowa. You know what? It was the best decision of my life so far.

After casts that slipped and a tenotomy in New York, my son had his final two (out of fifteen) casts in Iowa. The last two casts that Dr. M put on him were perfect. They were applied with finesse, a skill that few people in the entire world possess. Atypical feet are just that, not typical. My son was in b&b for 23 hours a day for 3 full months which started post Iowa, on July 18, 2014. After that we weaned down the hours slowly. He’s 11 months old now, his foot looks great. After emailing Dr. M a picture of my son’s Atypical Right Clubfoot today, the response I received back read, “ARE YOU SURE WAS THE RIGHT??? IT LOOKS BEAUTIFUL!… GOOD WORK KEEPING THE BRACES [on].” It may be miraculous, but diligence and good decisions made it reality.

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Another Day Spent at the Clinic

I hate the way the word clinic sounds. Still, I take my son to a Club Foot clinic. I respect the doctor we see, he knows his stuff about Club Foot. He was able to identify my son’s foot as atypical on first sight. By the time I got to his “clinic” I already knew my son was atypical. http://www.mdorthopaedics.com/images/complex_proofs.pdf helped me self diagnose.

Although I respect my son’s NYC doctor, the wait there is for hours. Every. Single. Time. Today I got there at 11am and wasn’t seen until after 2pm. The doctor looked at his foot and wasn’t sure why his Ponseti bar’s Mitchell boots were set at differing angles from one another. “He’s unilateral, right, atypical,” I explained. We’ve been seeing this doctor every four weeks for the past six months, but he doesn’t remember us. We’re only a number at the clinic.

My son is doing well, thankfully. I know this from consulting regularly with the doctor who we drove to Iowa to see, Dr. M. After 13 casts that either slipped or fell off I took my son to the best in the business, and yes, Iowa is Oz for Clubfoot. Emerald City. Not Ohio. Not Idaho. Iowa. Think it’s crazy to leave NYC to go to Iowa to see a doctor? So did I. Ponseti treatment originated there and it thrives there.

I’m frustrated. I’m mad for my kid and every other Clubfoot kid that has to wait hours to see a doctor who doesn’t remember them. I’m annoyed for every parent who knows more about Clubfoot than plenty of doctors practicing on children as if they’re guinea pigs. The doctor at the clinic is not included in those trial by fire doctors. His associate, I’m not so sure about. Either way, a major change is needed. I left there today wanting to explode! I shared information with some other parents, while they waited, and directed them to good Internet Clubfoot information. I preached the word of Ponseti. I still left unsatisfied. My son went into size 1 boots today. He’s my Superman, but the Clubfoot community needs a lot of saving. I’m strapping the S to my chest too. Mom on a mission.

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Not a Typical Foot

I didn’t know what Clubfoot was.  It was one of those things that I’d possibly heard the term.  The ob/gyn told us that our son would have it at our 16 week appointment.   We were scared.  We had a Materni21 test to scan for all types of scary things.  He wasn’t going to have those scary things.  The doctors tried to convince us that Clubfoot wasn’t a scary thing.  Clubfoot is scary.  Why lie? Why down play it? Why not be blunt? I am blunt.  I sometimes wonder why I was given a child with this deformity, yes deformity.  Does that word scare or offend you? It shouldn’t.  It’s just fact and sometimes life and facts are scary.  Frightening.  You want to be able to trust, believe and blindly follow your doctor.  Simply, don’t. Question, research, do your home work. This is your child. I went from knowing nothing about Clubfoot to advocating for children and identifying atypical club foot from internet pictures in the last 9 months.  I educated myself for the well being and best possible treatment of my child.  I am passionate and I care about these feet, possibly more than anything I’ve ever cared about before. Randomly I remember my quote in my high school year book “Some of the people you never cared to know are some of the people you never knew to care for.” I made the quote up myself and it applies to my life today. Clubfoot people are my “people” and I really care. If you do too, follow my blog.