Making Progress

Well Sporty had her 4 month post-op appointment last week, complete with x-rays and I’m thrilled to report that we are making serious progress. Her growth plates are still open and her left foot has gone from 89.7 degrees to 95.5 degrees and her right foot, which was the one that she fractured went from 86.1 to 91.2 degrees. This is awesome progress in 4 months considering we were told it could be 12-18 months before we saw progress.

You can really see in this picture the change in her heels. Before surgery they weren’t even touching the ground and post, they sit level with the ground. We hope to get to 110 degrees so that we’ve over corrected a bit.

Working on her in fielding but check out her heels on the ground! This is huge!

Sporty continues to work hard at softball and has started doing extra in fielding work with a former coach that we have been in touch with through her whole journey. We are actually so lucky to have a couple of positive female coaches in her life that have both played college ball. Sporty has not had an easy 12 months from her team breaking up a year ago, to surgery, to a broken ankle, she thought she found her dream team only to be benched due to her size. We can work on attitude, effort and mechanics but unfortunately she’s as tall as she is and we can’t do anything for that. Despite all of these speed bumps, she keeps on kicking and is working harder than ever to be the best that she can be (while getting straight As in school and also launching an Etsy bracelet business). As one former coach (also a D1 one college player said, someday when she’s an All American she can devote an entire chapter in her book to this year). Now she’s playing for her catching coach who started a club team and I’m so excited to see how her journey plays out under her guidance. Her coach was a catcher at a D1 school and has been such a positive influence to Sporty in private lessons, has unwavering faith in her (and yes, she has sent Sporty home from a bad lesson), so I’m excited to see her develop Sporty on the field too.

This year has definitely been a lesson on perseverance on both my part and Sporty’s part. Sporty continuing to work through all of these hurdles is definitely a testament to her spirit. I learned to trust my gut. I could have sent Sporty into a very invasive surgery on the other side of the country that would have taken her out of her happy place for at least 2 months but instead, I preserved and sought alternative ideas and her we are, she’s getting stronger than she’s ever been with more mobility than she’s ever had. She’s even been texting with Dr Fluffy Unicorn and she’s still committed to helping him reach his goal of being on the cover of Sports Illustrated.

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Firsts

It’s taken me a few days to process this all and make sure it’s not a dream or I’m not getting Punk’d but Monday could have seriously taken that cake as the worst Monday in history.

It all started on our drive to practice, when we were about 10 minutes into our drive and I heard a big thunk. Arizona roads are crap, can I just put that out there? I think I’ve had 3 cracked windshields in 3 years because of all of the rocks and gravel. So thunk happens, Sporty turns to me and says “well there’s another chip in your paint.” I’m like “At least it wasn’t my windshield!” Well 10 minutes later my low tire pressure warning light comes on. It happens sometimes with the fluctuation in temperature but it was like 108, so the air should be big. 10 minutes later Sporty stated she feels like the car is slanted, I tell her we’re on a hill, that’s why. It sounded good. We’re still 20-30 minutes out from practice. We keep plugging along and finally get to our exit. At this point my car is angry with me, it’s flashing and by the thumpity, thump, thump, it’s clear my tire is F-L-A-T! I scroll through the tire pressure and the front passenger side tire is at 3. Like it’s missing a digit 3. The rest are at their standard 32ish. Fantastic.

Somehow I manage to get Sporty to practice, on time and I start calling AAA. Silly me thinking I have a spare, gets AAA out there in 15 minutes. I empty my trunk, open all of the secret compartments. Remember it’s like 108 out. No spare. Seriously!?! Apparently cars don’t come with spares anymore. Thanks for the warning (side note, I learned spares cost $500 and new tires are like $260, something seems off there). Anyway, AAA will town 5 miles and it’s $4 for every additional mile. I’m like 30 miles from home and I start doing the math and I’m like hard pass. So I call Acura Roadside assistance back (I called them right after AAA to see who would come first!) and change that to a tow because they’ll tow 30 miles to the dealership where I bought it which is by the house. Hello easier morning. At this point Papa Bear and Young Jedi have joined me at practice to drive us home or to follow us or however it was going to shake out. So we’re kicking back, sweating cause it’s summer in Arizona, it’s been an hour plus so I call Acura back to see where my tow is and as I’m watching Sporty is batting. She hits a nice shot with her new bat, runs to first, hits the outside of the bag to avoid the first base-woman and I see her ankle twist and tweak. And I knew it was not good. So I’m on the phone, a coach goes to talk to her, helps her to the dugout, I’m still on the phone, Papa Bear finally goes into the dugout and tells her to man up, still on the phone, and she’s like “I can not stand on it.” Somehow she hobbles to the other dugout where their bags are. I don’t know because I’m still on the phone. She didn’t cry but she couldn’t walk so she got a lift from her teammates. Seriously the best group of girls! They wheeled her out just in time for the tow truck to arrive and tow my car to Scottsdale.

I was really hoping she would go to sleep and wake up and be fine. I know she was worried about her screw so I asked her if I could get her in with her dr, would she feel better if she confirmed her screw was ok. She said yes so I promised as soon as I knew the status of my car I would take her to see him.

Well the next morning she still couldn’t stand. I still thought it was a bad sprain so I made her clean her room. (To my defense, if she had cleaned it Friday-Monday like I had asked, she wouldn’t have had to clean it injured). But even I could admit, it didn’t look great. I made an afternoon appointment and made the dealership have my car ready by lunch, so I could get Young Jedi from camp, drive him home (cause Covid he still can’t come with us), and drive her down to the dr.

Again, still thought this was a sprain. Thought he would x-Ray her, show her the screw was all good, wrap her foot, tell her to rest for a week or so and we’d be back it. Clearly the x-Ray tech is nicer than me because he wheeled her around so she didn’t have to walk. Side note, her room was the cleanest it’s been in months, with an ankle that looks like that!

X-rays taken. Doctor comes in, asks her where it hurts, she points, he says “yep, that’s where your fibula is fractured.” I yell “No!” Sporty starts tearing up and cries (remember she didn’t cry when it actually broke but at the thought of missing tournaments, tears) “But I have softball tournaments.” Cast for 4 weeks, though she negotiated checking at 3 weeks since it is a minor fracture and since she’ll be missing her overnight tournament which she was so excited about (me not so much!), he’s going to try to clear her for our tournament in California in July. So we got our first non-Clubfoot cast, we got our first Arizona cast, and somehow we made someone mad enough to make a cast happen in June/July in Arizona. The screw is still in place, in fact, the screw prevented her tibia from breaking so it actually made the fracture less severe than it would have been if the screw was not there.

The good news is, because he got images of her right foot he was able to do a preliminary measurement and so far we have gotten 2 degrees improvement in her right foot in about 2 months. So it looks like the guided growth surgery is working even though I die a little bit inside every time I see her walking on her toes.

I have to admit, I’ve had a bit of a pity party this week over this. How many road block, obstacles do we have to face? Why can’t we just catch a break? But I spoke to our Rabbi today because I’ve really been struggling this week and she said “what if to Sporty, her life isn’t harder than it needs to be. It’s just her life.” And it’s so true. Sporty really doesn’t know a different life and despite all of this, she still fights on and does all she needs to do. It’s me that knows things could be easier for her and so I wallow in that. I know she’s bored and wants to be with her teammates, she finally found her softball home, they won their last tournament, of course she wants to be out there, but she’s right, this is just her life and in all these days, I haven’t heard her once say “why me!?!” So I’m a few days, I’ll put aside my pity party and we’ll trek forward like we always do. And quite honestly, of all the thousands of times she’s run through first base or hit a bag wrong, we’re lucky this is our first break. The timing just really sucks.

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World Clubfoot Day 2021

* I do not own the rights to the music *

Wow, so much has happened since last World Clubfoot Day. In the midst of this pandemic, clubfeet don’t wait for pandemics to subside, clubfeet do what clubfeet want. A year ago surgery wasn’t even on our radar and now she’s 6 weeks post-op and 100% back to her normal, active self and no one knows she has 2 screws in her ankles. Oh and through all of this, she managed to get straight As both semesters this year.

Of course Sporty wanted me to do another video, she has become so fond of these videos, she even had me send her it early so she could show some teachers before school let out. This year, the song choice was a no brainer. It’s all about the climb. She’s had a rough year, her team that she had been on and adored broke up, then she made an older team and was competing athletically but the girls were horrible to her so we recently left and after 3 weeks of trying out, she finally went to a team and from the moment she walked on the field I could tell it was her home. She instantly looked relaxed and comfortable and the entire team has been so welcoming. Through it all she has continued to train her little butt off. It’s all about the climb!

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Squats

Squats…they don’t seem like much of a milestone but for Sporty they’re huge. 6 weeks ago she couldn’t do a squat if her life depended on it. They were awkward, her heels didn’t touch the ground and they looked ridiculous. But then today she was doing these at the gym and my mind was blown! I know these aren’t perfect, her base is wide, her heels lift off the ground but if you saw the before, you would know this is huge. I’m hopeful that this means her guided growth surgery is working.

And spoiler alert to our 2021 World Clubfoot Day video…it’s all about the climb!

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Getting There…

Well we’re getting there. The surgical wraps came off Monday and it’s hard to see how big the incision is under the surgi-strips but for the most part Sporty is feeling good. She’s back at school and pain is manageable. I’ve only been giving her over the counter pain meds in the mornings and at night before bed so I call that a win 5 days lost-op! I know she’s dying to be healed so she can get back to her normal programming!

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4th In the Books

Well I’m exhausted and hangry after 5+ hours at the hospital but I want to document this before my exhaustion erases the day. Sporty is in and out of her guided growth surgery and while she’s a little loopy, she’s upstairs playing Roblox or Minecraft or Among Us. Who knows! All I know is the surgery went great and I do have to give Phoenix Children’s a huge shoutout. This was our second surgery there in 2 months and they are outstanding! The nurses, the process, everything, just a great experience for both kids in two different departments.

We got there and checked in and Sporty was barely in her super fashionable robe (she legit hates the paper shorts and robes) and they were ready to take her in an hour early. Good thing I cut off that third apple juice this morning as we were leaving for the hospital. 😅. She did great, they put an IV in her right away before any meds and she had little to no anxiety about today. They didn’t give her anything until they were about to wheel her back. The procedure lasted about an hour and then they brought me back to meet with the doctor while they got her settled in recovery. He was very happy with how things went! He felt like we were going to have success with this choice and didn’t even feel like lengthening the Achilles would have helped as her talus bone is raised and that is restricting her movement and not her Achilles. Can we get a “what what” for mommy gut!?! So the screws are in there, he felt screws would give a lower profile and make her more comfortable with shoes and such (and doesn’t change the outcome) and then we don’t have to rush to take them out because they won’t be bothering her. We can get 2-15 degrees, hoping for closer the 15 degrees and 2 would not be enough to call it successful. We should start seeing results in 9 months.

She was in a bit of pain coming out of anesthesia so we did have to give some morphine but when it was time to go, she was already starting to use her feet and put some weight on them. And of course making a TikTok in the lobby while we waited for a prescription

We got home and it was game over, she was up and walking. I’m supposed to keep her out of sports for 2 weeks, any guesses on how long until she goes back? My bet is she’s chomping at the bit to get back Monday! Especially because they got new uniforms and she’ll want to be wearing them!

Fingers crossed for good results and quick healing!

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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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