Our first appt at Shriners was set for June 18. This seemed
like a long time to wait, but we spent the time well. We had been swimming a
lot and enjoying having fun outdoors. Leading up the appointment we had finally
been given the name of the condition affecting the joints in Mithadeline’s
hips, legs and feet. Arthrogryposis. I had no idea how to pronounce it and had
no clue what it meant. But soon I was on a search for lots of information. I
(we) learned a lot. Arthrogryposis is a condition in which the patient
experiences non-progressive contractures that affect more than one part of the
body. I had to look up what non-progressive meant. So basically the
contractures of her joints will not worsen as she ages. A majority of children
affected with Arthrogryposis are affected on all 4 limbs. Mithadeline is
affected in her hips, legs and feet. She does not have full flexion on her hips.
Her right leg is stuck in an extended form, with her knee cap rotated to the
outside of her leg. Her left leg is stuck or flexed in a bent position. She
also has severe club feet. If you are as curious as I was, you can go here to
find more information about Arthrogryposis.
She is fortunate to be seeing Dr. Van Bosse at Shriners, one
of the leading orthopedic surgeons in the field of Arthrogryposis today. His
suggested plan of action is to straighten her feet with serial casting,
straighten out the bent leg and then work on her hips so she can stand straight
up. Seems intense, but we are looking forward to her surprising us with her
determination along the way! We will be continuing these treatments over the
course of the next year. The plan is for her to walk with some form of
assistance. We asked if she would be able to walk unassisted. Dr. VB couldn’t
speculate, but did say the kids he sees with Athrogryposis surprise him all the
time. This little one has so much determination. We are excited to see the
outcome!