Well, here we are again friends. I have held out for several years, but the time has come for me to put this all in one place as it will affect our day-to-day lives for the foreseeable future. After battling and concurring Sever’s Disease (which is a nasty inflammation between the growth plates in the heels), G found herself with some chronically sore ankles. Unfortunately, this started to bother her at the beginning of the pandemic and so initial treatment ideas were delayed. But we finally came to a point where we could comfortably manage a few weeks of physical therapy (which didn’t help), a follow-up with the foot & ankle specialist whereupon she was fitted with new orthotics (which made things worse), which ultimately led to an MRI. The good news is, there is no sign of Sever’s Disease left- HOORAY! The bad news is, G has a fibro-osseous talocalcaneal coalition of each hind foot. You know…. That common childhood ailment 🙄 You may be wondering what in the heck that means? Well, basically there should be space between those bones pictured above, but as you can see, there is not. These little puppies have decided to try to grow together when they shouldn’t. This is a congenital condition that can only be corrected by fusing these bones together in this particular location. But they can only do that with a mature skeletal system. So NO SURGERY for now. Phew. To no one’s surprise, this particular kind of coalition is rare in kids. So the plan is to get her refitted for specific orthotics that will attempt to hold her ankles still as it’s the side-to-side movements that really cause pain. I mean pain that causes her to limp and limit activity. It’s a bummer and I really, really dislike seeing her hurt. But that’s what we have to work with- orthotics that hopefully help, good shoes, and for the love of God, NO RUNNING. It looks like her gymnastics days are over and she won’t be playing sports or hiking (sob). We will be reaching out to her school (where we haven’t even been in over a year) and try to work out some kind of 504 plan to make accommodations for her in gym class. I absolutely do NOT want her sitting on the sideline feeling left out and getting grief from her peers about “not having to run the mile” like she did when she sat out with Sever’s. No, no…. None of that. So I need your help friends. I want to hear from other parents who have gotten creative with 504’s. I need ideas for activities that will spark joy for her without causing unnecessary pain. I am SO GLAD we bought a house with a swimming pool, which we had definitely said that we didn’t want 😂 We are going to be protecting her and managing her pain for the long haul, and overdosing her with medication until she’s 17 isn’t going to fly. I am equal parts relieved to have some answers, and really sad that she always has something holding her back. It stinks, and it could be worse. I know. I really know. I guess the big difference is, when she was little, I could shield her from so much. She was aware of her struggles, but not like she is now.. Now she hears and knows and understands TOO MUCH and it’s a burden that I wish she didn’t have to carry. I liked it better when I could carry all of it for her. But alas, she is wise beyond her years and she is no longer a baby. This is also wonderful as we can empower her to have a say in things. Like, for example, whether or not she will EVER choose to have that fusing surgery. It can be up to her. But after a year of distance learning, the last things she needs is any more separation or singling out from her peers. 5th grade is on the horizon, so we have to figure out a plan that will allow her to thrive confidently, and as pain-free as possible. So lay it on me friends- I need ideas and advice from all of you wise people! Until then…. Deep breaths.
Here is an educational video about G’s condition, starring our awesome foot & ankle specialist:
youtu.be/GcyW5RWiqko
And if you haven’t gotten enough of us, here is G’s testimonial that we made for Dr. Jarman during her bout with Sever’s Disease:
youtu.be/ahiZk8xgQB0
youtu.be/GcyW5RWiqko
And if you haven’t gotten enough of us, here is G’s testimonial that we made for Dr. Jarman during her bout with Sever’s Disease:
youtu.be/ahiZk8xgQB0