Saturday, January 19, 2013

Xrays and sting rays

Last week we went to Carrie Tingley and got Xrays.  Well, here they are!  Her right femur is about half the length of the left.  But, her right leg looks pretty awesome.  As you can tell, the discrepancy is pretty big.  But, as you can also tell... she's chubby as all get out!  I didn't realize that you could see chub rolls on x rays.  Turns out that you can.


When the doctor lady here in Albuquerque saw the x rays, she suggested that we amputate.  Just so that everyone who is not familiar with PFFD is aware, that is what everyone says.  If you scour the internet for PFFD blogs, you will see that almost everyone gets that suggestion for treatment.  What is really frustrating for Paul and I is that when we were told to amputate the doctor was very matter of fact. Did not suggest we seek a second opinion, etc.  I don't fault her for being certain in her suggestion for treatment; however, it did highlight the need for everyone to be their own advocate when it comes to medical treatment.  There are plenty of couples and parent out there that might not have been as prepared to hear what we heard and just gone along with what the doctor said.  Just something to think about. 

STING RAYS.. DEVIL RAYS?  (What is the Florida baseball team again?)

Since then, we have been speaking with a lovely lady named Jennifer at the Paley institute.  You can learn more about the Paley Institute here ->  Jennifer forwarded Lydia's xrays on to Doctor Paley who thinks that she is a Paley class 1B, which is AWESOME and not what we were expecting to hear.  In any event, Paley said that Lydia would need a super hip surgery and multiple lengthenings.  

Obviously, nothing is set in stone yet...  but we are making an appointment to go to Florida this Spring to visit with the super doc.  Jennifer has worked for Paley for a few years and has a daughter who has PFFD and so she is very aware of what we need as parents and what Lydia needs as a patient.  I'm very, very excited at the prospect of our daughter having a real leg with flesh and blood. I hope that we can take some time out during our trip to have a little fun. 

 I appreciate everyone's prayers.  God really is amazing.  The thought of having to cut off my daughter's leg has really highlighted the sacrifice of the crucifixion of Christ.  I can barely take thinking about taking away my daughter's leg during an age where she would never miss her leg or foot.  I can not imagine the pain of allowing your son to be crucified.  I know its preachy.  But its the truth.  In any event, if we do go the route of lengthening the next few years are going to be rough.  Really, really rough.  Keeping a leg is not a walk in the park.  Please continue to pray for our family.  We will need it. 


  1. She is blessed to have you two as her awesome parents and advocates.

    1. I appreciate it. I hope we can live up to our own expectations!

  2. Congratulations on your little girl. I am an Orthopedic Surgeon in PA working on a website used by other surgeons for learning purposes and was wondering if I could post these x-rays as an example of PFFD, as there aren't many good available x-rays for such purposes. I would of course remove any identifying information. Thanks for sharing your guys' story.

    1. You sure can. I would like to know more about the website! If anyone is able to learn anything from this whole thing, then we completely support that. we also have sonogram pictures of her hips if you need them. We also appreciate you removing identifying information. thanks!