Pre-op from post-op

Seven months.  That's how long it has taken me to actually sit down and write about the surgery experience.  The whole thing is almost out of body.  It takes a while to sink in, like, "did that just happen?!?"

Quick catch up - I have a kid.  Her name's Lydia.  She has a short leg.  The doctors told us, "Amputate, create a nice stub for a prosthetic and go about your lives." We said, "How about, no.  My kid's still in utero.  That sounds a little extreme."  And now we have chosen to travel two time zones, six states, and  many worlds away from Albuquerque, New Mexico to West Palm Beach, Florida to one of only a handful of doctors that could possibly touch her - short of amputation - without causing almost irreparable damage.

Except it's much more complicated than just a "short leg".  And to say there are a "handful of doctors" is overestimating.  There are two.

I digress.  In January of this year Lyd went in for her super hip.  I can't even explain to you what they did, except that she didn't have a hip joint and now she does.  It's complicated.  Anyway, we went down to WPB (West Palm Beach) a few days before surgery day to hang out, get settled, and do the pre-op appointments, tours, etc.

It never really hit me what goes into making a kid feel comfortable in a hospital.  Lydia has always been very "go with the flow" and she's only two at the time, so I didnt do a whole lot in the way of "preparing her" for what was about to happen.  The hospital did a great job, though.  This was not their first rodeo.  Paley's kids have the entire third floor of the children's hospital at St. Mary's. (Except PICU.  more on that next time.)  We had a nice lady named Brittney call me before we ever got on the plane to WPB to make arrangements to tour the hospital.  Brittney was perfectly blonde, smiley, sweet, and kind.  This sounds vain, but you really want a pretty, smart, patient and smiley girl to walk you through the hospital the first time and tell you what will happen when and why.  Good hiring choice.

At the end of the tour, Brittney gave Lydia a medical kit.  My mom had gotten Lyd one before.  If anyone plans on their kid spending time in a hospital, the medical kits are a must.  Just a little piece of advice to stick under your hat.

Now to the morning of the surgery.  Check in and pre-op were super early in the morning, which is great because your kid hasn't eaten or drank in 12 hours.  They can be a little cranky.  Its best that they sleep though most of that.  Back in pre-op was this lovely lady named Flo.  She RAN that joint and did not apologize for her running a smooth ship.  That being said, she was lovely and kind too.  I had to wear a paper gown to take Lyd back to the operating table and Flo brought us markers so that we could color the paper gown to kill some time before donning the thing.

I've read many renditions of prior parents going through this and I never really knew what pre-op/surgery/anesthesia was like.  Well, in short, they gave Lyd an oral mediation, which kind of made her sleepy.  Once they were ready for her to go back into the operating room, they lay her on the crib, raise up the crib bars, and roll her back.  I got to go with her, walking beside the bed.  She was drowsy, but not asleep. (Side note - there are nurses there that do NOTHING but watch your kid while they are on that table.  Their job isn't to help the Dr or get a scalpel.  Their job is to watch your kid.  You will beg her to take care of your child.  She will.  And you will never forget her face.) When we walked into the operating room, I was struck by the brightness of the lights and silver of the utensils.  I sucked every tear back into my eyes - and it was a good decision.  Lyd just went along for the ride.  She took her cues from me and smiled all the way to the operating room.  The nurse transfer Lydia from the rolling bed to the operating room table and put the gas mask on her and Lyd is out in under 15 seconds.  I was (very) quickly ushered out of the operating room and found myself back in the waiting room.

Where we waited for 8 hours.

Xoxo
AC

Changes

We have been back from Florida for about 5 weeks.  Lydia is on her seventh week post super hip. I just wanted to write a quick blog-post to document and let other people know some of the changes I've noticed since we've been back.  Are they due to her surgery?  I have no clue, but they didn't show up until now.

Words:  Lydia talks.  alot.  It was almost like she got out of the hospital and started talking like a full grown person.  She speaks multiple word sentences.  She has an outstanding vocabulary.  She understands "in the past" vs. "right now", she can count apples, and she pretty much uses all parts of speech in her sentences.  (I'll ask her if something hurts and she will not only tell me what part of her leg hurts, but whether it hurts right now or in the past.)  I can't explain it, but her vocabulary and ability to talk is crazy and literally started once we left the hospital.  I spoke with a speech pathologist who tested her and she tested at the 3 year old level for cognitive and speech skills. The Speech Pathologist said (and it makes since) that since Lydia was restricted in her motor growth that she had no choice but to burst out in the cognitive sphere.

Stuttering:  She has also started stuttering.  Just in the last weeks.  I think that there is a little stammering in both my and Paul's families - all of which was outgrown - but still something to note since the interwebs say that it can be caused by trauma.

Nightmares:  I am pretty sure that Lydia is starting to have nightmares.  Nothing horrible I dont think, but she has been a great sleeper for the last year and only recently started wimpering in the middle of the night and screaming.  I'll ask her if she hurts and she says no.  Many times she is still asleep when I go in to see her and make sure she is okay.

Pretending:  One thing is for sure - The girl can make-believe.  The Cashes all have a wonderful ability to make-believe/pretend, so maybe she is just coming into a great part of her birthright.  It might also be tied to the cognitive jump - I don't know.  I just know that hide and seek, pretend fruit picking, princess play, and playing "Super hero" are some of her favorite new post-Florida play activities.

Acceptance:  I didn't know what else to title this part.  Lydia has a fighter's spirit.  It's been evident since the beginning, which is good considering what her life will look like for the next few years; however, Lydia has recently began accepting what she cannot fight.  It's both a good and bad thing, I think.  I don't want her to ever stop fighting, but I also don't want her to fight against something that . . . (I dont know what words to put here.  I hope you can get my feelings though).  Example:  long story short, Lydia had to have two staples put in the back of her head (yes, while she was casted.  parents of the year, I know.).  We told her their would be two staples, really quick. Lydia fought and cried as the Nurse Practitioner held her down and stapled the back of her head.  The second staple misfired. Lydia lost her shit.  I asked Lydia to look at me.  She did.  I told her that we had to do one more staple.  Lydia looked at me with that two year old ire and put her head down - voluntarily - for the second staple.  Don't get me wrong, she was crying.  Yelling.  She didn't swollow her emotions, but she did what was asked of her without a fight.  Part of me thinks that this trait will be a defining awesomeness of her in many years to come.  In any event, I add it because it wasn't a thing and now it is.

If any more come up, I will add them.  Everyone in the PFFD/CFD blog-osphere seems to talk about "changes", without any real specifics.  So, here are ours - all in one place.

post op day 1

Here we are, more than twenty four hours post surgery.  My child is a mother effing beast.

The super hip surgery was a definite.  We all thought that the super knee surgery was a given, but frankly Paley doesn't make that decision until he gets into the operating room.  Lyd did not need the knee surgerybecause it is stable.  That is awesome.  I would have utterly lost the "do we have super knee surgery" bet.

Lyd did have a blood transfusion and was under anesthesia for, like 7 hours or something like that, so we spent last night in picu.  Today we got moved over to the pediatric orthopaedic floor.  Lydia had in her epidural still and will for a while.  They stopped the meds in the epidural for a period of time today and that wasn't fun, but like I said my child is  a beast.  Her temperature has risen a few times today, but that's to be expected, but it still sucks.

We have watched Tangled no less than four times today.  Tangled is the new Frozen.  Tell your friends.  It's going to be the newest "throw back" sensation.

No pictures this time because I'm updating this on a kindle.  Please excuse spelling and grammar errors caused by writing a novella on Swype.  I'll try to get some pictures soon and update when I have more to say than "today was less than stellar, but it's cool cause by God is great and my daughter Is a beast"

 Xoxo~AC

Be still

It's been a wonderful few months. We've been living life, loving life, and appreciating one another.  Without getting into details, I must tell you that we have recently overcome a very trying time.  Lydia originally had her Super Hip surgery scheduled for December.  I've said it before and i'll say it again - it's a big deal.  For those who are interested, see the link.  The surgical part starts around minute 4.  I wont get into it.  That's not the purpose of this post.  For those that care, you can watch the video.   https://www.youtube.com/watch?v=jeYR3t8jzlk

We were originally scheduled for December.  We had everything planned.  Ducks in a row, etc, and were in the middle of what can only now be described as a very dark mourning period. Why, you might ask?  Well, because we knew the journey we were about to embark upon and its freaking heart-breaking - that's why.  Suffice it to say that it sucked.  But that's not the point.  Keep reading.

About a month ago, we received a  phone call from Jennifer, our patient liaison.  She asked us to change the surgical date because Dr. Paley wanted to live stream Lyd's surgery at a conference.  I can't explain it to you, but there was something amazing and relieving about using this terrifying time in our life to help the next generation of doctors and the next generation of CFD kids keep their limbs.  Needless to say, we changed flight reservations, booked a hotel, booked a car, and got our (emotional) acts together.  We had prayed and prayed about this whole journey and God has answered our prayers in the most unforeseeable way possible.

We are enjoying our almost two year old and enjoying one another.  When it is time to focus on Lydia and her healing, we will do that. In the meantime, I just ask that you pray.  Pray for my family.  Pray for my girl. Pray for our Doctor.  Pray for our surgical staff and Pray for the person who is donating the blood that my daughter might need during surgery.  I mean this with all the love in the world - but I don't need your "good thoughts".  Nor do I need you to "think about us".  You are not magic and your good thoughts do me no good. I need your fervent prayer.   Now, if you are not one to pray and insist on "thinking about us", please do it while baking me a casserole.  A casserole would be helpful.   Please deliver it in February.

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