Friends With FOP

Wow!  Thank you all for all the positive thoughts and prayers!  We really do have an amazing circle of support around us.  Our home phone has been ringing off the hook...it's hard to find a handset that is fully charged.  I have never seen my inbox so full of emails.  All the grandmothers and neighbors have started separate prayer circles....I am just so grateful.  We have not been all that religous but events like this make you think twice and hope that there is a higher power out there looking after your child.  I have questioned, "Why my little girl?"  ...

Last month we noticed what we now know to be the first of Erin's flare-ups.  Over a month ago, Erin had a large squichy lump in the right of her chest that started to grow larger.  We saw several doctors and pediatricians, and eventually had an MRI to determine what it was. After the MRI it could be seen that it was cartlidge that is turning into bone.  The swelling has subsided, but immediately after it went down we could see that she has limited movement in her right arm.  We looked at photographs from last month, and Erin was swinging ...

Yesterday my dad sent $1000 to help with Erin, which is a great help.  There are several things we need to get her immediately to help keep her safe. One of the first things we're getting for her is a latex-foam bed.  Sue and I have a large king-size version and Erin usually ends up in it sometime during the night.  When we put a foam cover on her hard crib mattress, then she actually stayed in her bed all night... so it appears that she is uncomfortible. One of the other things we're getting her is a jogging stroller.  You've probably ...