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. 

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 ,

Saturday, January 5, 2013

Lydia is one month old!

I don't know if you know this or not... but I have a baby.  I mean we.  We have a baby.  Paul and I are working on the "sharing" thing.  Her name is Lydia and she is one month old.  Whoa!  Time flies.  We were so excited when we finally got her.  She is beautiful.  She is seriously super intelligent.  She already has so much personality.  And she has a short femur. 

My goal is to have that last part not be a defining characteristic of hers, but people are so interested and want to keep up with what's going on with her (and us) so I decided to start this little blog for friends and family.  Not to mention that when we found out that our lives had changed more dramatically than we could have ever thought, the blogs of other parents who were doing the things that we are about to embark on were helpful.  I hope this is helpful to someone too. 

We found out that there was an issue with our otherwise perfect little girl about March or April 2012.  At first we were told she had no femur.  Let me give you a little anatomy lesson...because my law degree also came with an M.D.  The femur is the top of your leg.  Its the largest bone in the body.  It hold the majority of your body weight and connects to your hip joint and enables walking, jumping, skipping...  all the things that kids love to do.  We were told that she didn't have one of those oh so important bones in her right leg. 

Well, that was a lie.  She does have a femur.  It's just short.  Really, really short.  We have monthly measurements throughout the pregnancy if anyone is interested.  The condition is known as PFFD or proximal femoral focal deficiency.  We are so blessed, though.  We were able to find out this information soon and mentally prepare for what the next few years of out lives were going to look like.  So many parents don't get that luxury.  In any event...  this little girl is, like, whoa beautiful. 

We have our first appointment with a pediatric orthopedic specialist in a week and a half.  We are super excited to see the structure of her hip, knee, foot, etc.  From what we've been told,  that information is going to set the paths that we take.  From what we are able to gather our options are pretty much three - leave it alone, lengthen, or amputate.  Seems pretty severe, huh?  You can see why the next few weeks are so important.  In the end, though, I know that God has already laid out our paths and hers.  Say a little prayer for us and I'll update as soon as we get some more information.

Xoxo - AC