Have you ever felt at home? Or had the feeling that you may have FINALLY found the right place with the right people who understand you? Well my friends, there are no pain-free guarantees with a mechanical issue such as coalitions, but I think we have found a surgery-free support team for pain management. Now, just cross your fingers for us that our insurance company and Phoenix Children’s come to a contract agreement or as of December 1st, we are once again up a creek.
So after getting a second and third opinion locally (one of which was horribly stressful and one of which was okay), and a fourth opinion via telehealth out of state (which was good but would cost ALL of the money….and more importantly would take a lot of “doing” given her medical history), we have not found a viable and comfortable surgical option. And we refuse to put her through a long and painful recovery if the best odds they can give are 50-50. So we finally…..FINALLY, freaking FINALLY got an appointment with the PCH pain clinic. Did you know that you have to have a written referral from your doctor just to make an appointment no matter your insurance plan? Did you also know that it takes many, many hours to get through to all of the right people to make this happen, collect medical records (most of which I did myself after getting fed up), and then get squeezed into the schedule? Phew! I have oscillated through the years in my profession between artist/yoga teacher and medical mom. Well, this is a medical mom season, and that’s okay. I’m super glad I can do this full time, because that is most certainly what it takes.
Now for the good news:
Gracie described our appointment at the pain clinic as “lovely”. This is HUGE given her current major medical anxiety. We got to see the pain doc, psychologist, and physical therapist ALL AT ONCE IN THE SAME ROOM! Omg! And they already knew EVERYTHING about her. I almost cried. They said, “By the time kids get to us, they have been passed around the medical system, traumatized, and have told their story over and over again, so we want to eliminate that today.” 😳🤯🙌🏻😆 I almost jumped onto the couch like Tom Cruise. They were just so kind and we felt so heard. And they were optimistic while remaining realistic. And I thought, “YES”. So the plan is to start with some new, softer shoe inserts and specialized PT. She will also have telehealth counseling appointments to help her learn to cope with and diminish pain. They gave us a mountain of resources and videos, tips and coping mechanisms which have ALREADY helped. Again, it’s not a fix, it’s support. And I think this is our best bet.
So far we have had that first evaluation, and then yesterday we had our first PT appointment. When we walked into the clinic, I was overwhelmed with a clear feeling that this is the kind of place where they understand people. There were so many kids in there that reflected various stages of Gracie’s experience. And they were all SO darling and SO resilient. And it was incredibly moving. Babies with tracheostomy tubes, every kid had glasses, walkers, leg braces… you name it. And the facility is just absolutely incredible. These are very focused, one-on-one sessions and it was so obvious that this has been our missing link. We tried PT, but not like this.
So wish us luck- with insurance and contracts, with actually being able to get on the schedule for PT and therapy, for not missing tons of school due to all of these appointments, and for healing ❤️🩹
So after getting a second and third opinion locally (one of which was horribly stressful and one of which was okay), and a fourth opinion via telehealth out of state (which was good but would cost ALL of the money….and more importantly would take a lot of “doing” given her medical history), we have not found a viable and comfortable surgical option. And we refuse to put her through a long and painful recovery if the best odds they can give are 50-50. So we finally…..FINALLY, freaking FINALLY got an appointment with the PCH pain clinic. Did you know that you have to have a written referral from your doctor just to make an appointment no matter your insurance plan? Did you also know that it takes many, many hours to get through to all of the right people to make this happen, collect medical records (most of which I did myself after getting fed up), and then get squeezed into the schedule? Phew! I have oscillated through the years in my profession between artist/yoga teacher and medical mom. Well, this is a medical mom season, and that’s okay. I’m super glad I can do this full time, because that is most certainly what it takes.
Now for the good news:
Gracie described our appointment at the pain clinic as “lovely”. This is HUGE given her current major medical anxiety. We got to see the pain doc, psychologist, and physical therapist ALL AT ONCE IN THE SAME ROOM! Omg! And they already knew EVERYTHING about her. I almost cried. They said, “By the time kids get to us, they have been passed around the medical system, traumatized, and have told their story over and over again, so we want to eliminate that today.” 😳🤯🙌🏻😆 I almost jumped onto the couch like Tom Cruise. They were just so kind and we felt so heard. And they were optimistic while remaining realistic. And I thought, “YES”. So the plan is to start with some new, softer shoe inserts and specialized PT. She will also have telehealth counseling appointments to help her learn to cope with and diminish pain. They gave us a mountain of resources and videos, tips and coping mechanisms which have ALREADY helped. Again, it’s not a fix, it’s support. And I think this is our best bet.
So far we have had that first evaluation, and then yesterday we had our first PT appointment. When we walked into the clinic, I was overwhelmed with a clear feeling that this is the kind of place where they understand people. There were so many kids in there that reflected various stages of Gracie’s experience. And they were all SO darling and SO resilient. And it was incredibly moving. Babies with tracheostomy tubes, every kid had glasses, walkers, leg braces… you name it. And the facility is just absolutely incredible. These are very focused, one-on-one sessions and it was so obvious that this has been our missing link. We tried PT, but not like this.
So wish us luck- with insurance and contracts, with actually being able to get on the schedule for PT and therapy, for not missing tons of school due to all of these appointments, and for healing ❤️🩹