Monday, January 14, 2013

1 down. 839 more to go.

 
 
We made it past out first Ortho appointment!  The local pediatric ortho hospital is Carrie Tingley.  I was calming a slightly irritable baby and my lovely husband got to fill out the paper work - - unsupervised, might I add.  I guess he found the section questioning our daughter's social history to be pretty funny.  Considering she's 5 1/2 weeks old, her social calendar is rather empty.  I don't know that "kicking Papa when not eating" qualifies as an Olympic sport, but maybe the committee should think about adding it. 
Our appointment today consisted of a hip sonogram, x rays, and a visit with doctor Silva.  The hip sonogram was pretty fun for this little girl...  but mainly because Valerie, the stenographer, demanded that Lydia eat every 5 minutes to keep her calm so that Valerie could get some good pictures.  Lydia really likes eating.  (See above picture in re: favorite subject and favorite activity.)  Here is a picture of her on the scales.  She weighs over ten pounds!  that is a LOT of weight gain.  Also, her right leg is the short one.  The right femur is about half the length of the left. 

                                                                            To the left is a picture of her getting her x rays.  Do you know what Lydia doesn't like?  x rays.  She thinks they are stupid.  Necessary.  But stupid.  Mr. PCash held it down.  This girl wasn't cooperating and I did the calming and Papa did the dirty work- moving and maneuvering her so that we could get good pictures. He's a soldier.  So is Lydia.  I am one lucky lady! 
 
 So, here's what we learned today.  PFFD affects the femur and proximal hip.  It doesn't appear that Lydia has the "ball" at the top of her femur to create the ball and socket joint required for full hip function.  Also, she is looking at around a nine inch femur discrepancy at maturity.  without a normally functioning hip.  And a knee that may or may not be fully functioning.  (There will be a future blog post entitled "RG 3 gets a new knee, so why can't she?"  Im sure it wont be an upbeat blog post.)  So, here is what we got as a recommendation - fuse the hip joint and amputate the leg. 


 The Cashes don't think that is a good enough answer at this point, so we will be making an appointment with Shriners and Doctor Paley in West Palm Beach.  Paul will be looking into taking the Florida Bar and I will be looking into awesome prosthetics that fit over her foot.  :)  I get that we may have to cut off our daughter's leg.  I get it.  But there is a lot to do before we go down that route.  She deserves the best.  I mean, look how cute and calm she pretends to be!

On other news - She started smiling last week!!  She'll she me and grin the biggest toothless grin ever!   And she got placed into a Pavlik Harness so deal with a slight dysplastic hip on the left side.  so far?  She hates it.  only three weeks with this thing on and then - FREEDOM!!
I could give more of an update, but right now Im typing with one hand - so more updates later!

xoxo ,
AC
 

5 comments:

  1. You're amazing!! Love you so very much <3

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    1. My sweetest love! I love you too!! Pray for my little girl. She's so amazing and I hope you get to meet her soon!! xoxo

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  2. Praying for strength for all of y'all, she is beautiful!

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  3. One thing we had to learn to keep in mind is that "the best" we thought we wanted can change. But always trust your mommy gut God gave it to you for a reason!

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    1. Thanks for the reminder. It's so easy to go full force down one path that might not be the best. Say a little prayer for our judgment for her!

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