Miles was born with club feet and a diagnosis/categorization called "Arthrogryposis," which means multiple joint contractures. His wrists and hands are also affected by his Arthrogryposis. He underwent serial casting (new set of casts weekly where they slowly stretch his feet) and then a double tenotomy (cutting the achilles tendons) when he was 9 weeks old, which is a pretty standard procedure for treating club feet. He has done pretty well since then and has walked with AFOs (orthotics) since he was 20 months old. Unfortunately we have noticed regression in the last couple years and have been talking to his doctor in Akron about what to do and had a second opinion in Cincinnati about what to do, all while waiting to see a doctor in Philadelphia who has specialized in Arthrogryposis, Dr. VanBosse at Philadelphia Shriners hospital. We have been on that waiting list for two years. Finally we were able to see him for the first time in June. He recommends serial casting and a double tenotomy, the same procedure Miles underwent as a baby. He says that no matter how the feet are treated (read: even if you do everything right, you'll still have regression), they will go back to how they were when he was born, but as he gets older, there will be more time in between regressions, and eventually they hold, they stay and you don't have to keep doing it. I am SO glad we finally got to see this doctor and we didn't go with other opinions. In April we were getting impatient and thinking we needed to just move on and see someone else, which was when we scheduled appointments with Cincinnati Children's hospital. The day I got home from our first appointments in Cincinnati, Philadelphia Shriners called us with an appointment in June. Just to put things in perspective, these are the different recommendations each of the doctors had for Miles:
Akron-remove a small wedge from each of Miles' tibias
Cincinnati-remove the talus from each ankle and tilt the calcaneus
Philadelphia Shriners-serial casting and double tenotomy
The casting will be long-leg casts that come above his knees, and usually they bend the knees in his casts so they can't come off, so he will be in a wheelchair from November 1st until probably mid-January. We'll do the first set of casts in Philadelphia this next weekend, do the casts in November and December in Cincinnati, and then assuming casting is going well, he will have the surgery on December 18th in Philadelphia.
I'm not too worried about the procedure itself. I do anticipate that life will be pretty different with Miles in a wheelchair. There will be adjustments that we will need to make and some things we haven't thought of yet. I worry about how Miles will adjust to being in a wheelchair. Through all of this I think the greatest blessing is the encouragement President Ballard gave a few years ago for us to counsel together as families. Counseling as a couple, with Miles, and as a family has made the most difference in hopefully achieving a good outcome for Miles.
https://www.churchofjesuschrist.org/study/ensign/2016/05/saturday-afternoon-session/family-councils?lang=eng
5 comments:
I love that you are blogging! Good luck with all the changes this will bring to your family. We'll keep you all in our prayers.
I’m so glad you found the right solution for cute Miles!!! ❤️❤️ I will keep you guys in my prayers!!
Miles constantly amazes me with his ability to keep up with other kids and do everything they do, even when it's a struggle for him. That boy has heart and persistence! I love your family. I'm willing to help with watching kids during the day, meals, and possibly some rides. Please let me know what I can do to make your life a little easier these next few months.
Thanks, Christy!!! It's hard to explain to people what Miles is going through, so we're glad to have this in writing. We're behind you all the way! We love you guys so much! You're always in our prayers.
I hope everything works out for you guys and Miles! Love you.
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