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Happy Feet! (not the movie)

Until I had a son born with a congenital birth defect in his feet, I never really thought too much about my kids’ feet.

But now, not only do we think about feet but we celebrate them!

Today we had the joy of attending the Happy Feet Party hosted by Super Sheldon’s orthopedic surgeon (Dr. Matthew Dobbs) and his team!

The impact that Dr. Dobbs has on his patients is unique. I can’t even imagine how many children he has treated for Clubfoot and/or Vertical Talus. I’ve mentioned before that we are very fortunate to live in the same town as the specialist for our son’s diagnosis, but today made that even clearer.

Families travel from all over the world (literally…from everywhere) to have their children treated by Dr. Dobbs and many of them made special accommodations to be in town for today’s party!

We met families from Canada, Iceland, Texas, Rhode Island, Florida, New Mexico, California, Illinois…I could go on!

Dr. Dobbs has changed the lives of each child and family forever.

And the best part?!  The theme of this year’s Happy Feet Party was superheroes…so you know I couldn’t resist bringing TinySuperheroes capes!  We were able to empower ALL of the nearly 100 kids who came to the party!

My heart could have leapt out of my chest to see these kids spend the whole day running around in their capes…and for a Happy Feet Party…watching kids run is extra special.

We are so grateful for Dr. Dobbs, his entire staff, Heroes, Cope & Kids for bringing Spiderman and Captain America, Santa Needs Help volunteers and all of the families who made the party so special!

Most definitely our TinySuperheroes Squad is much stronger after today!

Super Sheldon Post-Surgery Update!

We’ve been so overwhelmed by the loving support that you all have shown us.  I wanted to update you on Super Sheldon (at risk of feeling like I’m bombarding you!)

In 2015 our middle son, Super Milo, spent 8 days in the hospital fighting RSV. Other than that, and many quick ER visits!) I’ve never been on the parent side of a pediatric surgery. I’ve visited TinySuperheroes after many surgeries…even heart transplants…but I didn’t know what the other side was like. In many ways, I still feel like I don’t know what it is like. Even in surgery, we have been very blessed.

First let me tell you the best thing that Vertical Talus has given my family – a deeper sense of community. I always knew community was important to me. The TinySuperheroes community is as dear to me as my own family, and now we have been warmly welcomed into a new community. Two months ago I’d never heard of Vertical Talus. Suddenly I feel connected to families from all over the world who generously share their experiences to help newbies like me. It feels so good – I truly hope TinySuperheroes can grow to make people feel the way that other ‘happy feet’ families have made me feel.

Sheldon is becoming a pro at cast removal!

Prepped and ready for surgery.

Super Sheldon with Dr. Dobbs

Super Sheldon’s surgery went great! Dr. Dobbs says his feet are in great shape! We won’t see them for awhile. He’s in casts now – they are quite bigger than his last to account for swelling – and the only thing I can see are his cute, swollen toes. I’m kind of glad I can’t see under the casts yet – if his feet are as swollen as his toes, I might freak out! He’ll have casts on for the next 6 weeks until they go back in and remove the pins that they just placed.  (6 more weeks of casts…Super Sheldon’s got this!)

 

Back in my arms after surgery!

The recovery was a little tough on me – it’s quite hard to see your sweet baby in pain and not really be able to hold him (in any normal way at least) because his feet needed to be elevated. The staff at the hospital was amazing and they were able to control his pain, which I am so grateful for.

Super Sheldon and I had the honor of empowering a few TinySuperheroes during our quick 30 hour stay. Most notably was our new friend and sweet roommate, Super Mia! It was such a blessing to share a room with her family, and Sheldon & Mia were able to get in good sync with crying. Super Mia is 2.5 years old and uses Down Syndrome as her super power. She had just gotten her tonsils and adenoids removed and was being cared for by her loving mom and dad. Sheldon happened to bring a few capes with him so we loved being able to give a TinySuperheroes Cape to her!

Our new friend Super Mia!

So Sheldon was able to come home on Friday afternoon and while he’s definitely still needing Tylenol regularly, he’s starting to perk back up to his old 9-week self! His sidekick brothers are doing a great job of loving him and not touching his feet!

Thanks again for the love! It has been so wonderful meeting other Vertical Talus and Club Feet families and I hope this post can be an ounce of support for someone else out there!

-Robyn

Surgery Day is Tomorrow!

Well, everyday of this Vertical Talus adventure with Super Sheldon I find myself understanding more and more about our TinySuperheroes Squad. The truth is, what I’m really understanding is how much I will never really understand what many of these families survive…but I hope I can learn to love them better with each ounce of experience I gain…and I hope they will forgive all of the things I don’t understand.

For example, I now kind of understand what it is like to try to get to 4 appointments + surgery in 1 week (it’s a full time job). I now kind of understand what it feels like to have to advocate for your child – or to trust your gut to get a second opinion (it’s exhausting and terrifying). I now  understand what it’s like to feel like you’re missing out on the sweet moments holding a baby without full casts on (it breaks your heart).

And soon I will understand what it feels like to hand your 8 week old baby over to doctors who will put him to sleep, cut him open and fix him. Soon I will understand how long that hour-long surgery might feel.

Super Sheldon goes in early tomorrow morning. The surgery seems pretty simple compared to what many of our TinySuperheroes have endured. They will place a pin in a bone in both feet will do a tenotomy on his achilles tendons. I am confident he is in the best hands.

I’m so grateful for the support you all have given my family and I truly hope that Super Sheldon’s journey will continue to humble and mold my heart into one that can create lasting impact on our TinySuperheroes. I’ll be sure to keep you posted tomorrow!

Many thanks!

Robyn

Perspective & Vertical Talus

Perspective. If I had to sum up my journey with TinySuperheroes in a few words, perspective would be at the top of the list.

On February 24, 2017 we welcomed our third son into our family, Super Sheldon. It’s crazy how instantaneously it seemed impossible to imagine life without him and terrifying to imagine life with 3 boys! (Just being real here…three feels a little overwhelming…)

When Super Sheldon was born, his feet looked funky. It was clear that his feet had been stuck in a strange position while he was on the inside (I’m pretty sure right under my ribs) but less clear if something more substantial was wrong.



At 2 weeks old, an X-Ray revealed that Sheldon has bilateral congenital vertical talus. I’d definitely never heard of it and am still not positive how to pronounce it. As I understand it, it is a deformity of the foot that causes the talus bone (the bone that connects the lower leg to the foot) to point the wrong direction (it typically points towards the toe, and in these cases points vertically toward the ground).

Vertical Talus is completely fixable and his early diagnosis will only help. It will involve a bit of chaos (as I feel it) in the coming months including many sets of full leg casts, 2 surgeries and a set of awesome boots that are connected by a bar. (Treatment is similar to club foot.)

While I certainly have feelings of angst, hesitation and fear, those feelings are no doubt trumped by the feeling of gratitude – something that the TinySuperheroes community alone has taught me.

Before TinySuperheroes, months of casts and surgery on my sweet new baby would have felt paralyzing. I would have wondered what we did wrong…worried about what this could mean for his future…fear the stigma of having a child born with deformed feet would carry…

But with TinySuperheroes, I see how blessed we are by this diagnosis.

Blessed because it is something they can correct.

Blessed because it shouldn’t affect his gross motor development.

Blessed because they caught it early.

Blessed because the doctor who developed the treatment for Vertical Talus, is in our city!

Blessed because we have health insurance that will cover this.

Blessed that we have family around to support us.

Blessed because we have Sheldon, who is just perfect.

Blessed because TinySuperheroes has taught us that differences are super powers!

Because of TinySuperheroes, I don’t want to hide his casts. I want to strap on his cape and let Sheldon be an ambassador for our TinySuperheroes who overcome things like this and SO MUCH MORE. I want to use this opportunity to bring awareness and encourage kindness.

So tomorrow we go to St. Louis Children’s Hospital to see Dr. Matthew Dobbs and Sheldon will get his first set of casts. Tonight, I just want to say thank you. Thank you for teaching me how to see the joy in all things, at all times. You’ve truly changed me and I’m forever grateful.

We’ll keep you posted, but Super Sheldon is ready!

PS – If any of our TinySuperheroes have had full leg casts…how do you prevent the inevitable disaster of a terrible diaper!??!??!?!?! (Seriously…I need to know!)