Tuesday, August 18, 2009

how it all started

Hello, My name is Mazra and I have 10month old twin boys Andrew and Jesse. The boys were breach for months and due (i believe) to his positioning Andrew has arthrogryposis. This is an umbrella term for a "stiffening of the joints." IN addition to the condition he was also born with severely clubbed feet and hip dysplasia. IN the last couple of months he has been through a pavic brace, serial casting for the feet, and a tonotomy (cutting of the Achilles tendon.) his feet are now aesthetically correct (thank g-d for my doc!) but he has absolutely no muscle tone in his legs and they cannot straighten at the knee. He has had physical therapy for months now and we are not really sure how his progress will be... (more casting? more surgery? braces? we have no idea when he will walk and how.... He also currently wears shoes and a special bar to sleep to keep his newly turned feet in place and will continue wearing them for at least another year. I have been through several pairs of very expensive shoes so far (which insurance does not help with) and would love to start a program for others, like a shoe exchange. anyway.... this is our story so far. I would love to hear form other mothers and fathers who are experiencing the same or similar.....

1 comment:

  1. Hi Mazra,

    First let me tell you your boys are beautiful! I am an occupational therapist, have worked with Donna. I may have some contacts and other information if you want it. My email is aimee.elsner@gmail.com and will give you my number if you want to chat. I have worked with other children like Andrew and they are doing very well.