Escape from winter wonderland

So much has happened since my last blog post update.  At the beginning of this semester, we got custody of my oldest niece, Britnee.  Having a 13 year old is probably the craziest thing we have ever done, which is saying a lot seeing that in the last week, we made it to Florida through Stormageddon Cleon, Lydia turned one, we had our second Paley appointment, and did our first 5K.  Since we were in Florida for Lyd's first birthday, we couldn't celebrate with the whole family or our big girl, Britnee (since we didn't know she was going to be with us when we made the appointment), but we had a little party on the beach - just the three of us.  It was weird being on the beach, sweating, while pictures of snow accumulations back home line my facebook feed.

For her birthday dinner, Lyd had some chicken 'n dunplings and a banana moon pie.  You don't get too much more Southern than that.  The moon pie was questionable at first. . . but then she got to the marshmallow and it was like the heavens smiled upon her.  All and all the first birthday was good.  The weather was humid and windy, just like she likes, but MAN was it hot.  everywhere.  We went from 18 degrees to 77 degrees.  When you are looking at snow falling all around you, it is almost impossible to believe that 77 degrees could be considered a cold front.  Needless to say, it was an adventure in packing...

Every year, the Paley kids participate in the West Palm Beach Marathon.  I think that it goes without saying that many of these kids cant actually run a marathon.  Even if they had the training, their little bodies are already enduring a lot of stress so a marathon is just a little ridiculous of a concept - so instead they do a 5 K.  It's a really nice thing to see so many kids in walkers and wheelchairs and fixators and lifts and prosthetics walking together in their yellow shirts.  Lyd really, really enjoyed the attention.  Shes a ham.  The appointment itself was good.  Nothing spectacular to write home about.  We got her script for her new leg.  I'll post pics as soon as we get it made.  We are presently at a 3.1 inch disparity between the left and right leg and will be scheduling a super-hip surgery for this time next year.  Thankfully, the doc told us that he expects her to need the superhip type I surgery.  That surgery will put us in Florida for 2 weeks this time next year.  Thankfully, the rehab on that one is the easiest, though the surgery itself is the most difficult.  We wont have to be down here for any extended period of time for another 3 years or so . . . if everything goes according to plan.  But in between now and then, we are enjoying our ever expanding little family.  Xoxo - AC

Side by Sides

I'm hoping to get some kinks worked out in the computer world so that I can post some videos.  Until then, enjoy the side by sides. 


We now have a little girl who crawls and stands (kinda).  I would post a picture but there is something that isn't compatible with something else and blogger wont let me upload stuff.  Rest assured, blog friends, there is crawling and standing.  And getting into stuff. 

She is crawling like a typical baby - slower than average maybe, but no less treacherous and carefree than the average baby.  The standing is something of interest, though.  its a Half knee/Pyramid thing - but it works for her!

Oh!  And Teeth!  She has four teeth with a Michael Strayhan style gap.  And he's famous and handsome, so that's another thing she has in her corner.   
















You ever seen a baby snear? She also growls.  Like, a lot.  Her Aunt recently described her as sounding like a dragon.  She growls more than any kid at school and I recently went to a play date where she was the only kid who you might want to think twice before feeding after midnight.  See below.  Homie don't play. . .unless she is actually playing. 

 

 

Kids are messy

Kids are messy.  Very, very messy.  I think that God made them cute so that you wouldn't get mad when they look like this:

When we first brought her home, she cried.  Alot.  and ate.  A lot.  She still does a whole lot of eating, but she also does a whole lot less crying.  She's almost like...  a real person.  She sits up like a big girl, smiles all the time, gets frustrated, laughs, and (drum roll please) she has become MOBILE!  Don't get me wrong.  She's not crawling yet.  The leg discrepancy has made crawling a feat.  She tries to get both knees in under her; however, one knee is about . . . oh. . . 3 inches or so shorter than the other, which means she immediately rolls when she tries to get in the crawling position.  I can't really explain it with words, but its pretty funny.  When I say mobile, I mean she rolls long distances with a purpose.  Baby fun times have begun!

  I recently went back to work and as a result, Lydia has started attending day care, aka "school".  She goes to school right across the street from Dad's work.  Dad goes to visit her a few times a day.  Lydia's first week of daycare, Dad was being nice to another little girl.  Lydia rolled over to said little girl stole that little girl's pacifier.

What?!  You mean to tell me that this face is capable of taking off the proverbial "gloves"?  Apparently, this hasn't been Lydia's only instance of getting the other kids "in line".  But more stories to come in the future, I expect.   

So, PFFD/CFD is a congenital birth defect.  Meaning?  It could happen to anyone.  As a result, I thought I would throw out a little public service announcement concerning:  Seat belts.  When your right leg is significantly shorter than you left, chairs are an acquired thing.  You can't just sit in them like every other Joe.  See below.  You might think that your little bundle of joy is sitting safely buckled in their seat.  You literally turn around and back and she has wiggled her little leg out from under the seat belt and the aforementioned seatbelt is useless. 

Maybe I will throw out more PSA's as she gets bigger.  I see more in my future.  Also, I have zero doubt that she is going to crawl.  It is a real thing that is going to happen.  We have a few bets on how she is going to do it.  (Snake crawl/ Half bear crawl, half regular crawl/ Army crawl)  Ill post results when they come in.  She just has to work it out.  I was worried.  But like most things in life, the worrying was a waste of time and energy.  Also, we are having her dedicated soon.  We will post time and a link when that comes.  Its a big deal and we invite you to join in praying for her future.

 

XOXO,

AC

SuperMan and the SuperDoc

Planes, Trains, and Automobiles.  We took all three. . .if you consider the skylink at DFW a train.  And for purposes of this blog, we do.  It makes the subtitle more catchy.  In any event, we flew from Albuquerque, NM to DFW.  As an interesting aside, we landed in terminal D coming into DFW.   Any of you familiar with DFW know this to be the international terminal. This proves to me that the majority of Americans think that New Mexico is part of Mexico.    The picture to the right is my own, personal superman!  For real.  Lydia thinks that I make the world go round, which you might think is all cute and sweet.  until the world isn't right, and since Im responsible for making the world go round, I must be responsible for when something goes wrong, right?  Baby Logic.  In any event, Paul was a go to husband and father.  He held her when she needed holding, walked her around when she needed walking, and did all the things that made the trip bearable for me, Lydia, and the hundred or so American airlines passengers.  Thank you Mr. Cash.  America appreciates you.

 So, we finally got to Florida, and made it to the hospital the next morning.  As soon as we walk in, some lady comes over to us, so excited, and says, "Lydia!", scoops my baby away, and starts walking around the office introducing her to everyone.  That lady is Jennifer, our coordinator.  She's known Lydie longer than Lydie has been alive.  We've had this trip kinda planned since in- utero.  It's like a little family in that office.  There were people in the waiting room who started talking to us like old friends.  I guess they realize that we will all be seeing a lot of one another over the years - so, lets skip the pretenses.  The picture above is us getting the X-Rays ready.  And the picture to the right is after a long day - right before we left. 

One thing about the Paley office is the wait.  The wait is ridiculous.  Hours and hours we waited.  But, we were prepared and we didn't mind.  When we finally got in the office with the SuperDoc, we didn't feel rushed and he didn't seem to mind the screaming baby.  It was interesting to meet a man who was going to change your family's life.  He was normal, almost.  He cracked a few jokes and seemed to have a level of "swag" that you want in your daughter's pediatric orthopedic surgeon.  If there is one guy that I want to be confidence about what he's doing, its the guy messing around in my daughter's hip and knee joint.  People keep asking us if we liked the doctor and let me tell you this - It doesn't matter how we feel about the guy, he is confident he can fix my daughter's leg.  He can be an a$$ as far as I'm concerned.  But he isn't.  He was calm, answered our questions, and has created an environment where my family feels safe and surrounded by people who care.  So, If anyone has found this blog by virtue of a good search that started with "no femur", which was our scenario, go ahead and start saving the money and make a trip to see Paley.  Just do it.  Please. 

As you may or may not know, Lydie's hip is all kinds of funky.  That needs to get fixed, regardless.  Paley is going to do that surgery at around age two - So December 2014.  Then about the age of four we can start the lengthening process.  Its going to take a lengthening at 4, 8, 12, and a shortening at 9 or 11.  So, assuming that everything goes perfect and we get as much length as we can and no complications, we are looking at 5 surgeries and she is done at 12.  Crazy huh?!  From "We need to amputate" to "We can always grow new bone".  It is an amazing experience. 

Well, I'll finish up this post at a later time.  We are about to go to the zoo.  :)  In the meantime, here are some fun pics of the trip. 

Xoxo,
AC

I'm not lucky, I'm blessed. yes.

First of all, I'm not a Nikki Minaj fan.  But some lyrics are appropriate.  This happens to be one such a situation.  I'm not lucky.  I am blessed.  So, what have we been up to, you ask?  Mainly being cute.  We do a lot of cute stuff. 
 Example - we are cute when we sleep.  If you leave her undisturbed for long enough, she might fall asleep and you can get a cute picture such as this.  But she's not a fan of sleep.  I've been working part time from home and, let me tell you, finding 25 hours a week to do things is nearly impossible.  Why?  because she doesn't sleep.  I don't really sleep either so I guess its a push. 
 We also garden.  And by garden, I mean that we buy cute plants, put them in cute containers, and slowly watch them die. 


For Easter, we went to Clovis, NM to be with Paul's family.  Clovis is literally 6 miles from the Texas/New Mexico border.  As a Texas girl, born and raised, I could not stand the fact that a child of mine had never been to Texas.  Paul, being the ever accommodating husband and father that he is, drove us across the Texas border so that I could feed Lydia in Farwell, Texas.  She has had a meal in Texas.  At this point in time, that is all I can ask for. 

More updates when we get back from the trip!  Please pray for us at every turn.  Or maybe you can start with praying for the people next to us on the plane.  I think they will need it too.  :)

Xoxo - AC

Unbridled Milk Consumption

 A month of unbridled milk consumption does wonders to a little girl's girth.  She's coo-ing and becoming very polite (She can say "Hi"...  if by say you mean breathe the vowel sound "I", which kinda sounds like "Hi".)  And she speaks Pirate like a true Mike Leach Red Raider (She says "ARRR!). 

 My mom left last week so that she could be with my dad for valentines day.  :(  I have never been so sad seeing her leave.  But, alas, more moms came in!  Paul's mom and Aunt Sissy came in this weekend.  It was too much fun.  I love seeing the two of them interact...  and Dalene makes me miss my sister.  Oh, family.  Little Lydia loves her granny and aunt sissy.    We got to see cousin Kyle too, but he doesn't take pictures so you don't get to see his lovely smiling face. 

We just made our arrangements to go to Florida for our first consultation!  Good news all around - we got in network insurance approval for the consultation.  (woo-hoo for saving us over a grand!)  AND cheap flights.  We go to WPB (West Palm Beach) in May and spend about 4 days there hanging out.  We have no idea what all we will do while we are there (other than see the doctor, obviously)...  ideas on what to do in WPB with a 5 month old?  We celebrate our 5 year anniversary this July, so we are just going to use this as our anniversary trip.  No Durango this year.  We will just have to settle with the beach.  I'll just have to take one for Team Cash. 

We went back to Tingley this month for our check up for Lydia's dysplastic hip.  It looks like perfection!  The doctors and nurses there are so freaking nice.  Some people find their calling in life.  These people definitely did.  It is completely their helping hands that hooked us up with the insurance and Paley's place.  If you are looking for a donation this year, consider donating to them. Also, awesome side note - they used to be a polio hospital back in the day.  As a result, they supposedly have an awesome prosthetics department, which will come in handy in the next year when Lydia starts to walk!! 

New Section!!  I can see how things might get really dim and depressing from time to time and so I want to make sure and share the fun stuff!
LOVES:  Momma.  Attention.  Milk.  Being held.  Milk.  Jazz Baby by Lisa Wheeler.  Baths.  Momma.  Diaper Changes.  Singing.  Daddy holding me like a sack of potatoes.
DOES NOT LIKE:  Being put down.  Going night night.   Being swaddled for night night.  I don't know if you can tell, but shutting this kid off is dang near impossible. 
LOOKING FORWARD TO:  Her laughing.  Her liking her Papa more (that's an entry from Paul.  She adores her Papa).  Florida.  5 years together (Woah!).  Lydie getting a puppy (another entry from Papa).  Finally taking this girl to church in real life!  (we've been watching church online and I cant wait for her to go sit in the monkey room with all those babies!  Watch some awesome church anytime at www.calvaryabq.org.)

Xoxo,
AC

Xrays and sting rays

X - 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 -> http://www.paleyinstitute.org/?q=the-institute  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 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
 

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