12 Years of Clubfoot

And just like this post has been in draft mode for almost a month. 😳. Life.

Well I just looked back as I started this post and my last post was from world Clubfoot day in June! All of Covid and I never managed to make a post. That’s some seriously slacking. We’ve had 2 Clubfoot checkups, Sporty turned 12, been to PT, started using an ADM brace at night, and has moved on up to 14u softball (as a 12 year old!). All of this also means we’ve been treating Clubfoot for 12 years. And even though it’s been well over a decade of this, my stress and anxiety leading up to an appointment has not mellowed with time. I was particularly stressed these past few days. Last time we went for a checkup in Florida, her dr was pressing for surgery in the next 6-12 months, which would now be any time. I’ve been dreading this. Deep down in my mommy gut, I feel like surgery isn’t the answer for Sporty. I don’t know if it’s because I still only trust Dr Fluffy Unicorn, if I don’t feel like that’s the answer, if I’m afraid what it will do to softball, to her emotionally and physically. Her last surgery was really really hard on her and that was in 2nd grade. Granted this one is far less invasive but something in my mommy gut is telling me surgery is not right. I didn’t have this feeling with past surgeries.

We were fortunate that we didn’t have to travel this appointment. Her dr was willing to do a zoom appointment and dare I say it went much better than I thought. He didn’t push surgery in the same time frame. Her ADMs look to be working. I also asked about casting this summer and he agreed it’s worth a shot and also suggested intensive PT for her to see if we can get some gains. Her right foot has some good movement but her left is very stiff. We had to stop PT because insurance needed proof of medical necessity (yes, really, a child born with a birth defect of her feet might not medically need physical therapy on her feet 🤔. Which leads me to “why!?! Why does it have to be so hard to get the medical attention we need!” Ugh). But the ADMs are working! I’m beyond thrilled that we made enough progress to have the timeline extended for surgery. I’m seeking to make contact with Dr Fluffy Unicorn to see if I can get his perspective but I feel good about this appointment.

Sporty was in tears last night, she wanted to do surgery so she could stop worrying about surgery but I think today has breathed new life into her. She’s ready to get serious about her PT exercises at home. She realizes, I think she’s finally old enough, that I will never stop fighting for her feet, for her dreams, for her best possible outcome. I know we can get through this without surgery. (Definitely could use some well wishes and prayers that we can continue to improve mobility).

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World Clubfoot Day 2020

World Clubfoot Day! The day of the year where we celebrate my 1 in 1000. Sporty asked for another video this year and I actually made two because we had creative differences (we have a lot of those now that she’s a full blown tween) when it came to song selection. Sporty chose “Fight Song” by Rachel Platten because she’s facing another potential surgery and she’s fighting like crazy to avoid it. I chose “Get Back Up Again” from the Trolls movie because no matter what curve ball is thrown at Sporty, she always gets back up again. It’s been a rough journey for her and she continues to fight each day to defy the odds that were put against her.

Sporty is still playing softball, probably more now than ever and she’s loving her new team, the Firecrackers. They’re actually making their debut in her videos this year, as for the first time ever, Sporty asked me to include pictures of her team and not just her. I had to go deep in the reserves for pictures and videos this year as our season got cut short due to COVID-19 pandemic and we’re just starting to get on the ball fields again (just in time for the Arizona summers!)

We’ve begun our trips to see Dr Dobbs in St Louis since last World Clubfoot Day. Sadly Dr Fluffy Unicorn left for a graduate program in London and has referred us to see Dr Dobbs for treatment. Sporty misses Dr Fluffy Unicorn so much and although she likes Dr Dobbs and trusts him with her feet, as she says “he’s no Dr Fluffy Unicorn but he’ll do.” I have comfort knowing that we’re seeing the best of the best for Clubfoot and she continues to get superior care. Her Achilles are still tight but we go to physical therapy weekly and Sporty is actually really good about doing her exercises at home between sessions. As a result, her dorsiflexion has improved almost 10 points on each foot (she still sleeps in her dorsiflexion brace and is due for a new one)! We got way more flexibility than I ever expected to get out of this!

So without further ado, I present World Clubfoot Day 2020 videos!

(I do not own the rights to the music)

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We Came, We Went, We Survived

Sporty and I headed to St Louis before all of this cray coronavirus hit. I went well equipped with my ziplock baggy full of Clorox wipes and wipes everything down like a crazy lady. I will say with Sporty’s asthma, in the back of my head I am sort of nervous about her contracting the virus. But I feel super fortunate that we were able to make it out for our appointment before all of the restrictions started!

We did a quick overnight trip this time as it was her spring break and we wanted to get back for some spring training (which got rained out and then canceled!) but I’m glad we snuck in our visit. I was worried! We had a great dinner with one of my sorority sisters who directed us to Ted Drewes for dessert. Um yum!

Wednesday morning we woke up and freaked over to Dr Dobbs’s office. Sporty has been complaining of some foot pain so orthotics came in to meet with us. Turns out her AFO was too narrow and that’s what has been causing her foot pain so they stretched it out for us and gave us a script for a new one. Seriously that was our easiest Clubfoot fix EVER in our history of Clubfoot. While we waited for Dr Dobbs, Sporty sad faced me and said she missed Dr Fluffy Unicorn so we reminisced a bit about him and his whole office. Dr Dobbs came in and examined Sporty’s feet and declared she has stayed stable, which is a really really good thing because she has grown a TON in the last 6 months and growth and clubfeet are not friends! We still need to keep surgery in a couple of years in the back of our heads but it’s not urgent and it’s not something he’d consider right now. We’ve been doing PT for about a month now and he said to continue with that and we had back in about 6 months for another check. They really are so nice at Dr Dobbs, it’s amazing how personalized care is considering how many patients he has and I really feel confident that we’re doing all we need to help Sporty achieve her dream of playing college softball despite these feet she was give. Hoping for some additional mobility and looser Achilles by then!

After our appointment, we headed to the Science Museum to kill some time before our flight. We spent a few hours there and decided to go grab lunch. As we were pulling into lunch, I got an alert that our flight had been canceled so we bolted to the airport to get on an earlier flight. Made it back in time for school to be canceled for at least 2 weeks and to hunker down. I’m feeling very grateful that we got there, got checked out and made it back!

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Time Flies

I’m so embarrassed to see that I have made zero posts since our trip to St Louis. Life has a way of passing me by! Well since our trip to St Louis, Sporty has changed softball teams. She’s now a very proud member of the Firecrackers and she’s loving every minute of it and all of her teammates. Her new team is comprised of mostly her birth year so we don’t have to worry about aging out and such and she’s getting such fantastic coaching. She’s been catching a ton (she even got new gear as an early birthday present!) and she just loves everything about her team. They recently took 2 weeks off and she’s been an excited nut job about being back with her teammates. I on the other hand am thrilled she has found her “tribe” and the families are the nicest people we’ve come across, which is awesome since we’re starting to travel out of state next month for tournaments. It will be good times, good memories and amazing experiences for Sporty. So a few outtakes from last season before we move into our 2020 season!

Sporty also finally started physical therapy so fingers crossed we get some good flexibility from the exercises. We go back to St. Louis in March so hoping for a good report as we move into summer tournaments!

2020 season starts tomorrow with a Friendly so hopefully I can get it together to post more frequently!

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Clubfoot Mecca

Well Sporty and I returned from our trip to St Louis a few days ago. It sort of felt like we were in the Clubfoot capital of the world. 5 steps into the sky walk and we saw a baby strolling by in their brace. Then we saw little tiny casts everywhere.

So here’s the deal, our trip to Dr Dobbs did not disappoint. Our hotel was perfect, definitely no thrills but they were so nice and the hotel connects to the hospital via skywalks. We won’t be taking the metro ago (lots of weed on there and that’s saying a lot since we came from the San Francisco Area!). We found a great cab guy, who was more than happy to pick us up at 5am for our early flight.

First off, St Louis Children’s Hospital might be the only Children’s hospital that runs on tome. They took us back early, Dr Dobbs came in right on time and he had lots of patients that day. Within 3 steps he started rattling off terms of things he saw in Sporty. Then he checked her flexibility and then came the plan. The tendon transfers are working. Woohoo! All of her tightness is in her Achilles and in fact, they are pulling so tight that they are causing her knees to hyperextend. I always thought maybe her hyperextending her knees were causing the issues because she’s always hyperextended. He doesn’t feel surgery is necessary for the next couple of years and in fact recommended physical therapy.

Sporty was pretty happy, he said he even saw the stress melt away when he said no surgery. I’m not sure how we avoided no surgery. I was certain we were headed to the OR. That in of itself was worth the trip. All in all everything that Dr Dobbs said aligned with our last appointment with Dr Fluffy Unicorn. Dr Dobbs doesn’t think we’ll get much from PT (neither did Dr Fluffy Unicorn) but he felt it was worth a shot and then once she graduates from that, given her high activity level, he wants us to move to a sports trainer. So hopefully we can find a PT with Tuesday’s open because that’s our only non-sports day right now. No rest for the weary. He also suggested a modified night time AFO schedule for better compliance because I often find her AFOs off in the middle of the night so she can now do every other night with them on which she is loving.

After we had her appointment, we decided to celebrate. We walked down to Whole Foods for lunch, grabbed some yummy cookies and then visited the zoo. Seriously amazing zoo! The appointment was definitely necessary but even more so I think Sporty needed the time with me. I’ve been so focused on Young Jedi and his Asperger’s diagnosis and his struggles, I think she needed some serious mommy/daughter time.

We finished the night with pizza and San Pellegrino’s in our pj’s in bed! Sporty said if she can’t see Dr Fluffy Unicorn she likes Dr Dobbs.

We’re back the first week of March for another check-up!

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Tourney Season Has Arrived!

Well Young Jedi is home sick, he came home with a fever yesterday and I had a few quiet minutes before the Advil kicked in and now he hasn’t stopped talking and I’m going Bat 💩 crazy! 😜 So I figured it was a good time to blog about Sporty’s first tournament while he was engrossed in She-Ra (seriously, it’s a thing on Netflix, I don’t have the heart to tell him I used to watch it when I was little, cause he thinks I’m 100).

Sporty’s team went 0-4 but they just came together (we actually didn’t have a full roster last weekend so we were borrowing some players) so I’m hoping now that we have 10 and they’re playing together that we start to get some Ws. Sporty played great, probably the best I’ve seen her play. She was so confident and composed, she definitely lives for the softball field and is a different person out there. She even introduced herself to the umpire while she was catching which she was too shy to do last year. She was so confident and composed in the batter’s box. It was really awesome to see all of her hard work from the summer really come to fruition. She caught, played 2nd, 3rd and shortstop (which I didn’t even know she knew how to do! Lol). And she got her helmet sticker for talking on the field and encouraging her teammates. Finally the loud voice that gets her in trouble in school is beneficial for softball!

At the plate she led off, had one strike out, reached first on a drop third strike (outran the throw, not bad for a girl heading halfway across the country to see an orthopedic surgeon next week!), hit a double which probably could have been a triple but the runner in front of her stopped, tried her soft slap (got thrown out but she tried), and hit a signal to the shortstop which was too hard for her to handle. She was also a stealing machine and one of the umpires tapped her on her helmet and told her nice base running. Most of all she was so proud of her play and her feet were sore but in a non-Clubfoot way and in more of a “she’s out of tournament shape” way. A little epsom salt bath on Sunday morning and she was good to go.

This hit she had an 0-2 count and worked it to a 3-2. Fouled off 2 balls, stepped out of the box, took a deep breath, got in and ripped it. The confidence blew Poppa Bear and I away!

Not bad running for a Clubfoot kiddo facing potential surgery. Situations like this make me hope and pray for no surgery. So please send no surgery vibes our way!

Well I hope this post spread a little more positive energy than my last one 😆. For the record I’ve had some kick ass spin classes since my post. Best stress relief but I was also weak and procured these at Target to partake in some stress eating 🙈. And the magnesium suggestions were spot on, I started taking some and my feet and leg cramps have improved, hoping after the stress of next week passes we’ll be back to normal.

Young Jedi had a checkin with his neurologist yesterday (4 hours prior to his fever spiking) and ASD Level 1 was confirmed for him but he assured me now we can get Young Jedi the services he deserves so I know it will be a fight but a good fight. We’ll be back on the softball fields for another tournament this weekend and Sporty and I are off to St Louis on Tuesday (I’m praying for fall there because it’s still summer here and I’m over it!)

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Whoa is Me

I’ve been having myself a bit of a pity party lately. And the past few days have been really hard days. At least my pity parties have been on the elliptical at the gym or in spin class and not over a container of chocolate peanut butter ice cream. So my butt can thank me for that.

But I haven’t been feeling well (like for the last 6 months), I’ve been to the doctor and it’s either allergies or silent reflux (getting old is no joke) and they want me to go to an ENT but ain’t nobody got time for that. And I get the worst foot and leg cramps at night so I’m tired and grumpy.

We’re about 2 weeks out from our trip to see the doctor in St Louis and to say Sporty and I both have anxiety is an understatement. The good news is, the month of no running (which was ridiculously hard for Sporty) has come and gone and she is pain free! The rest and the gel inserts have helped and she’s fired up about her first softball tournament this weekend.

In addition to the looming of our St Louis trip, Young Jedi was diagnosed on the autism spectrum a few weeks ago (there I said it and it feels so liberating to admit his diagnosis), his diagnosis would be Asperger’s, if that still existed. {Don’t even get me started on that and how we’re failing so many kids by not recognizing Asperger’s.} I finally found a doctor who would listen to me, who probably thinks I’m a bit Bat shit crazy but didn’t blow me off or ignore me. He listened to my concerns, he saw I was at my wits end and on the verge of tears when he wasn’t going to meet with us because we were there with a sleep study and he’s not a sleep doctor, but he took the time to go over Young Jedi’s current diagnoses and current troubles and came up with the diagnosis I have asked about for years, with 3 different doctors {insert rolling eyes and frustration}. He even offered to call into our 504 meeting to offer suggestions for support for Young Jedi. I’m at peace with the diagnosis because the more I read about Asperger’s, it’s like the book is being written about Young Jedi. The diagnosis also connects a lot of dots for us. For years I’ve felt we’ve been missing something with him, that it wasn’t just ADHD and anxiety but more. I thought it was a sleep disorder so I went in expecting to leave a neurologist with some sleep meds but walked out with a kid on the spectrum, official diagnosis is atypical autism. I feel like I can take a deep breath and breath (minus the allergies or acid reflux that I have). I’ve found some really supportive friends here in Arizona who have connected me with speech therapists and friends who have kids on the spectrum and I am so thankful for the kindness that they have shown me. But I’ve cancelled two girls trips because as much as I need some mommy time, my kids need my time more.

But you guys, I’m tired. I’m over clubfeet. I feel guilty saying that but I am. I try to be all “we were given this for a reason, we got this, this will make a great story and Sporty is an inspiration.” But seriously, I’m over it. I don’t want it anymore. I know the doctor in St Louis is the best, but I don’t want to go to St Louis for treatment, I want to volunteer that day at the school book fair. I want to take Sporty to softball practice in Scottsdale that night. Sporty is so passionate about softball and is working so hard and getting so good that the thought of Clubfoot ruining it for her makes me literally sick to my stomach and keeps me up at night.

And life these days for kids is hard enough, I don’t want Young Jedi to have any additional obstacle. I want him to have friends. And I don’t even know where to start with autism. At least with clubfeet I had 16 weeks of being pregnant to prep, now I just feel like I’m treading water while a giant sea monster (Young Jedi’s current obsession which I’ve learned is part of Asperger’s) tries to pull me down.

It feels good to admit Young Jedi has Asperger’s. I’m proud of him, we wakes up every morning and tries to fit in a mold that wasn’t meant for him. Now that I know he’s not just a giant a-hole, that he literally doesn’t understand the world, I try to see the world through his eyes. His mind literally never turns off. He’s always seeking to understand this strange world that he sees with an entirely different set of filters. I really wish I could see the world for a day through his eyes. I love him for who he is and his beautiful mind and how he sees the world and putting it out there that he falls on the spectrum makes me feel like he can never feel I’m ashamed of him, like I’m trying to hide a piece of who he is. So while I want him to have an easy life I’m grateful for a diagnosis that will get us the therapy and programs that will help him thrive.

But sometimes I just want to have a pity party. Adulting is hard, life is tough, but I know we’re tougher. See you tomorrow spin studio for that pity party (but only because Poppa Bear ate all of the chocolate peanut butter ice cream because I would totally be getting involved in that right now.)

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A Chapter Ends

We made our trek up to NorCal this past week for what would become our last appointment with Dr Fluffy Unicorn. I found out last Monday on Facebook, while Sporty was at softball practice that Dr Fluffy Unicorn was leaving Stanford to go to London for a master’s program. My heart sunk, not only has he been treating Sporty since she was 10 days old but how was I going to tell Sporty that the one Dr who has always been her constant, her biggest fan (though he’s never seen her play), and who she admires so much, was leaving. She yelled “No!” when I first broke the news. Then followed it up with “Well we can always just go to London for my checkups, I’ve always wanted to see the Eiffel Tower.” {Insert facepalm here}. A) the Eiffel Tower is in Paris, not London. B) it’s really good that your amazing at softball because geography isn’t going to get you into college.”

Fast forward a week and Poppa Bear made a comment that her left foot looked like it was turning in, I had noticed it for a while but tried to convince myself I was being crazy knowing she had an appointment. A decade later and I still stress and over analyze her feet leading up to appointments. Then we were at the beach in San Diego and she was running barefoot and I just knew we would have a rough appointment, In addition to saying goodbye, I knew the news wouldn’t be spectacular, because she’s also been complaining that her left Achilles is giving pain after running at softball practice and it’s turning in, I’ve been around Clubfoot long enough to know that’s not a good equation.

Appointment day and we’re all stressed. Of course he’s running late and Young Jedi is the piece of work that he is. We’re all dreading the goodbye. Ironically, they put us in the casting room and as his office assistant put it so perfectly, you started your journey with us here and you’ll end it with us here. She’s retiring also, she saved me all of those serial castings and brace checks. She would scoop Sporty up out of my arms and walk her around before and in between casting changes, giving me a much needed break to collect my emotional, post-partum self and pull myself together. I don’t think she’ll ever know how much she saved me as a new mom dealing with a birth defect.

Then it’s time for Dr Fluffy Unicorn. “I heard a dirty rumor that this is goodbye.” “You’ll just have to come to London for treatment. Sporty, how’s everything going?” That was the blow, I traveled to see him because of that very simple question. Because for the last 2 years, he has put Sporty’s treatment in Sporty’s hands. Not what I see, or what I think but what Sporty feels and he has taught her to communicate and advocate for herself and that’s a really rare thing for a doctor to put that level of trust in a pre-teen. But they’re her feet, it’s her pain, and that’s how it should be. Even pediatricians address me and not her and she’s shy and doesn’t communicate what she’s feeling but with Dr Fluffy Unicorn, she opened up about her pain, about being afraid of another doctor touching her feet and messing them up and her never being able to play softball. That she wants to play in college and in the Olympics and if someone other than him treats her, she’s worried that may never happen. Everyone in the room was crying.

Then the exam and her Achilles are really tight. X-rays followed and fortunately the structure of her feet are near perfect. Like non-Clubfoot perfect. So that’s the one positive of the appointment. So it’s an Achilles issue. We talked about options. A repeat Achilles lengthening came up for the future (she had this done at 3 months) and then the water works really started. If she had surgery, she’d miss softball and lose her spot and softball is her life. Dr Fluffy Unicorn looked at her and said “Sporty, you’re my one chance at being on the cover of Sports Illustrated. I’m not going to let anyone mess you up!”

So here we are. We’ve been referred to go see a Dr in St Louis that is known all over the world for treating Clubfoot. He’s the only dr that was recommended to us. I’m not crazy about going to St. Louis but from the moment she was diagnosed with clubfeet at my 20 week ultrasound, I vowed to get her the best treatment to give her the best life and I won’t stop now. So it looks like Sporty’s story and journey continues, just in another chapter of her book. I hope we can close this next chapter and look back and say “that was a rough one” but we made it through because really the thought of her having to give up softball because of clubfeet, it makes me angry and sick to my stomach and question if everything really happens for a reason all at the same time.

This picture says it all of what Dr Fluffy Unicorn has done for Sporty and at 10 years old, she recognizes it. He has given her a life we never thought possible for her.

So we’ll close this chapter of our journey of the girl who was made to run with one last picture of her standing outside of Stanford Children’s, the last of 10 years worth of post checkup pictures.

So thank you Dr Fluffy Unicorn for all that you have done for our Sporty, I hope this is see you later (like at her college intent signing) and not goodbye.

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World Clubfoot Day

Another World Clubfoot Day is upon us and it’s time to celebrate not only my favorite Clubfoot kiddo- Sporty but also all of the friends we’ve made along the way! It’s also, Sporty’s favorite time to request a video produced by moi! We had trouble finding the perfect inspirational song that we have in the past but I finally settled on “Rise Up” by Audra Day because day after day, bump after bump, set back after set back, Sporty continues to “rise up” and to quote the song, I know she’ll continue to do it “a thousand times again.”

Since last World Clubfoot Day, we have relocated to the very warm Phoenix area. We’ve been here 11 months and it’s starting to feel like home (and like home is on the surface of the sun). We had one trip back to Dr Fluffy Unicorn in December and have another scheduled for mid-July. At our December appointment Sporty still showed some pretty significant tightness (she has grow almost 6 inches since January!) so he prescribed some custom AFOs which she’s been in for almost 6 months. Mom here isn’t entirely happy with her left foot but we’ll see what July brings.

Sporty of course continues to play softball (negligent blogging mom here missed the entire winter/spring tournament season) and is on a team that she absolutely loves. She’s been catching most of the innings and loves being back behind the plate. She continues to take hitting lessons and we’ve seen her bat wake up and she’s starting to get some hits, she’s been batting first or second in the order and her confidence is growing by the day.

Finally, we’ve started to give back to the Clubfoot community by volunteering for Clubfoot CARES, packing welcome envelopes for new and expecting families that are going to welcome Clubfoot into their lives. We’ve been really blessed with great treatment and a positive outcome and I felt it was important for Sporty to learn to give back. She packs each package and wonders if the family is having a boy or girl and if they will have one Clubfoot or two like she had. It’s really cute and inspiring how she’s embraced it.

Most importantly today is about education. My biggest fear when Sporty was diagnosed with her clubfeet was bullying. I was so afraid that her feet would look different and as she got older she’d get made fun of, cause let’s face it kids, especially girls, are mean. But I’m proud to say that Sporty fully embraces her feet and is confident enough to share and as a result can’t be bullied. She owns it like nothing we ever imagined in our wildest dreams. I expected her to keep her feet a secret at her new school but one day they were discussing what made people different and special and Sporty brought up her feet. Her classmates asked questions, she answered them and the next day she brought in her prior years’ World Clubfoot Day videos as well as casts and AFOs to share with her class. Talk about making yourself vulnerable! But her classmates embraced it and were moved by it. Many of them went home to tell their families about her feet, they googled clubfeet and learned about it and understood it. That’s what this is really about, education, acceptance, and embracing our differences no matter what they are.

So without further delay, World Clubfoot Day ala Sporty to the music of Audra Day. Keep “rising up” people!

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Giving Back

I’m super excited to write this post! A few months ago, I volunteered Sporty and I to help the Clubfoot C.A.R.E.S organization and we got picked to put together packages for families that are welcoming their new Clubfoot warrior. The packages are full of all sorts of information a new Clubfoot family could ever ask for. A perfect job for Sporty and I!

I felt like it was time for Sporty to start giving back, I want to teach her (and Young Jedi) that we’re super fortunate and they’ve been exposed to the best care and resources (for each of their respective diagnoses) that we could find. We also live in a very privileged area and it was time to give back, to stop just taking but be positive contributors to society. We’ve always offered our help and guidance for new families but I wanted to do more!

When I told Sporty about our new volunteer work, she was SO excited! I thought for sure I’d get push back but for weeks she’s been asking me when we could get the packages going and we finally got all of our materials in, so today we packed our first set. I helped her for a few and then she totally took it over. She took complete ownership of it and I could tell she felt good putting these together (and if you’re a recipient reading this and you have a crooked label or wavey seal job, know that your package was packed with pure love by Sporty. She even wondered with each package if your baby was a boy or a girl, if they were bilateral like she was and what their name was going to be). Ironically, 10 years ago today (thanks Timehop) she had her first of three Clubfoot surgeries.

She even asked me to take a video of her packing (ignore me yelling at Young Jedi, he was being a turd. 🤣)

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