Go Time

Well it all came together rather quickly but tomorrow is go time for Sporty. She’s scheduled for her guide growth procedure tomorrow. Today after her Covid test we were driving home and she said “I’m actually excited about my surgery tomorrow. I feel like this is going to change my life.” That does my mommy heart some good. I’ve been very hesitant to put her into another surgery, this one I feel good about but I always worry about how she feels about it.

For measure, here’s her barefoot walk pre-surgery. I want to see how her heel strike improves with the guided growth 🤞🏻. Of course she walked heel to toe on the video but you can see her heels don’t quite hit the ground in the last video.

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It Feels Like

It feels like maybe things are starting to fall into place for Sporty. After 2 years of not being comfortable with her treatment, I feel like a huge weight has been lifted from my shoulders and that sick feeling has disappeared.

She’s 100% not amused by my photos but I keep telling her that one day ESPN or Sports Illustrated are going to want these gems.

Today we met with a local orthopedic surgeon that was referred to us by the doctor in Salt Lake City. They took a TON of x-rays, I think he got more images of her feet today than they have her entire Clubfoot existence. He even watched her run. Her walk gait is good. Her run gait is better, no shock there, she was made to run after all. He said her feet actually look great for clubfoot feet. After his examination the doctor agreed that guided growth was a great option for Sporty. He did say that a tendon lengthening can’t be written off quite yet. It’s not the right route for her right now but we need to keep it in mind for the future. As of right now he thinks we’ll have success with guided growth as she has over a year of growth left on her growth plate in her ankles. He’s done 4 of these, it’s not common in the US, but the 4 he’s done have been successful. And there’s really nothing to lose by trying this. It’s so minimally invasive that if it doesn’t work, it doesn’t change anything, they just take out the screws.

Now we wait for scheduling to call and get us on the schedule. He said she can return to softball on day 2 following the procedure!!! And at the end of the appointment, he turned to Sporty and said “Remember, I work for you so if you’re ever in pain or something isn’t working out, you need to let me know.” 🙌🏻 Added bonus he’s local! I had some serious anxiety about traveling with her alone across country or even from California post-op.

We told her coaches this week that she’ll be needing this procedure and Sporty was very adamant that I tell them they’re not allowed to go easy on her because of this. ❤️ her grit and work ethic.

And it’s all falling into place because I followed my gut and reached out to Dr Fluffy Unicorn and asked him to think outside of the box.

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Optimistic

Well we returned Wednesday from our trip to Salt Lake City and I jumped right into picking Young Jedi up from the bus, unloading dishes, and doing 3 loads of laundry. Nothing says welcome home like dishes and laundry.

Our trip was great. There’s no other way to put it. The doctor we saw was amazing, Salt Lake City was beautiful and we got the news we were hoping for. Added bonus the ASU softball team was on our flight there so I should have taken that as a sign of good things to come.

Everyone at Primary Children was so nice and accommodating and were eagerly awaiting us. We got some fantastic images of her feet and growth plates.

The x-rays show that Sporty’s growth plates are still open and therefore she is a candidate for 8 plate guided growth. They basically will put a plate at the front of her foot (going through her scar from her tendon transfers) and insert a metal plate that will straddle the growth plate, this will cause the growth plate to come together in the front but cause it to get wider in the back, dropping her heel and fixing her toe walking without having to cut and lengthen her Achilles. The Dr drew this illustration for us. It’s the best possible news. It’s minimally invasive, no casting, she’ll be able to walk the day the procedure which means no down time, which means a happy Sporty. He also said she’s extremely strong and doesn’t feel that physical therapy will benefit her given her strength so check one more appointment off of my list!

I can’t say enough good things about the Dr we saw. He was knowledgeable, understood Sporty, asked her about her feet, explained everything. He even brought out his very first baseball glove to show her. So of course he’s retiring. 🙄. He did refer us to a doctor in Phoenix who did his fellowship with him and should be able to perform the surgery. Or we can go to Stanford and the doctor there should be able to perform the surgery. So I’m feeling super optimistic, I’ve done some research and this process has been leveraged in the Netherlands with success and she should be able to walk that day but will definitely be up and about within the week given the experience of others. Huge 🤞🏻 it all comes together! We haven’t had an appointment this good in years. We needed this.

Keeping with the tradition of pictures!
Beautiful view of the mountains from the hospital which is basically on the University of Utah campus
Of course we celebrated with Crumbl
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Journey Continues

My head is still spinning from all of this but I made a post about Salt Lake City so here’s the full story. About a week ago, after summer treatment plans fell through and after some failed follow ups on a few things, I decided Sporty deserved better care. We haven’t come this far to give up and accept subpar care! So very spontaneously I emailed Dr Fluffy Unicorn and also booked an appointment with a new doctor in California.

We were all set to fly out tomorrow and so excited to see friends we haven’t seen in 2 years. Last night I had a conversation with Dr Fluffy Unicorn about our plans and what’s going on with Sporty and he had some ideas about a possible treatment which is minimally invasive and a doctor in Salt Lake City who performs this with success. So I woke up bright and early and called the doctor and we discussed all of this, I told him we had plans to go to the Bay Area. He knows the doctor we were seeing and was going to contact him regarding x-rays to determine if she was a candidate for this procedure.

This morning I sat at the dentist with Sporty as he extracted a cracked tooth (don’t eat corn nuts!) and the doctor in California called to tell me he had to cancel our trip. So here I am floundering canceling appointments, reservations, trying to figure out how to get X-rays so that I can move forward with the doctor in Salt Lake City (did I mention he’s retiring May 1 and made an exception to take Sporty on!?!). Around lunchtime the Salt Lake City doctor calls me on accident, he was trying to contact a patient that was late and before he hung up I told him about our canceled appointment and where should I get X-rays to get to him. He says “come here tomorrow. I can see you in the afternoon. I’m sure there’s flights from Phoenix. My office will call you in 20 minutes.” So I hopped off the phone, got on the southwest app and booked flights to Salt Lake City. His office called 15 minutes later, was so incredibly easy to work with. We arrive around 11:30 there, will head to his office for imaging and then we’ll discuss if Sporty is a candidate for 8 plate guided growth procedure. And this is all very weird for me since I’m very much a planner. Booking a trip to California a week out was quick for me so turning around tomorrow and getting on a plane to Utah is very out of my comfort zone!!!

It’s all very surreal and dare I say feels very meant to be. I am so very grateful to still have Dr Fluffy Unicorn still looking out for Riley even though he’s no longer practicing.

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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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