I thought it was about time for a great big Emma update since there are so many of you who treasure her like we do. To know her, is to love her, even if it’s from afar ❤
She is so kind, loving, brilliant, and gifted in so many ways. One of which is she’s been a talented competitive gymnast since she was nine years old. But a few months ago, she made the hard decision to step away from it, hoping she’d be back one day.
This was even during her junior year, knowing she’d have just one more year of high school gymnastics after this. She is incredibly passionate about this sport so it says a lot about how much she was suffering to choose to lay down something she loves so much.
This was around when the doctor appointments we’d already been having really amped up. Emma’s PCP had done some testing but also referred her to a specialist, who ended up referring her to 4 different specialists.
And so it began. A months long journey of so many specialist appointments that we’d sometimes have 3-4 appts per week.
For awhile, she was being most closely followed for signs of multiple sclerosis. But as of now, that potential diagnosis has been tabled, pending other testing in the future.
What we do know so far is that she has a borderline long QT heart rhythm, optic neuritis, and POTS syndrome which is a type of systemic dysautonomia.
So my research into WHY that may be continues. Because while Emma is passionate about gymnastics, I’m passionate about health. So I care a lot about not just treating symptoms, but treating underlying causes!
I’ve been learning a lot and I’m sure I’ll share some of that over time. Because another one of my loves is people and if I learn something I think could help others, y’all know I’ll share 😉
In the meantime, I’ll leave you with sharing where this leaves us today. I’m excited for the next step towards Emma’s healing and getting her back to gymnastics, the sport she loves so much!
While we may have seen half the departments in Children’s medical center this year, one we recently learned of that we haven’t seen yet, is the center for female athletes! Emma starts there as a new patient this Wednesday and our first appointment will consist of a 2.5hr work up. If it’s that thorough, you know it’s gonna be good!
This center actually specializes in getting girls back to doing what they do best. And with a mental health crisis currently happening in this country (among kids too) I really appreciate that mission! I think it can be easy to forget our physical health is so closely linked with our mental health. But it’s true!
I’ll keep you guys updated and big thanks to all who have been loving on us with extra support and encouragement as we continue to go through this journey with our girl!