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!
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!
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!
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!
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.
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.
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.
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.
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.
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).
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!