amaya at lake

amaya at lake

Saturday, November 19, 2011

An old note

     I just found an old note that I had written when Amaya was four months old. It was a reminder of questions that I wanted to ask her orthopedic surgeon.  We were going to be seeing her for the first time. At this point Amaya was wearing a brace that kept her hip in a frog like position. She had to wear it all the time and we were not allowed to remove it (not even for baths or diaper changes). Her hip and knee were popping (we didn't know yet that the popping was happening because her hip and knee were dislocating). At this point, we didn't have an official diagnosis of PFFD, we didn't know what condition she had. We were told it might be hip dysplasia (that's why she wore that brace). She had had an ultrasound but, it was hard to read because she was so young and some of her bones hadn't finished developing.
     This time in our lives was so painful; there were so many unanswered questions, fears, and lack of information.  We didn't know what PFFD was, what the future held for Amaya or us. I remember having so many questions for our doctor and specialists.  We would go to appointments and leave with some answers and many more questions. That's one of the reasons I started this blog, for other parents on this journey. So they don't feel so alone, so isolated. So they know that others have walked this road and are willing to help them along the journey, and that this is a wonderful journey (although difficult at times, it's very wonderful). 

Here's what the note says, 
BRACE-
how long?
ok to take off?
does hip have to be in place by Dr.?
or is position of brace ok?
PFFD causing hip out or hip dysplasia also?
Knee out?
Info on family?

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