Kids are better than adults - part 1

The lengthening process requires her to have 11 "pin sites".  In short, each of these pin sites have a pin - about the size of your pinky - visibly piercing through the skin and into the bone.

Let me give you some quick back story into Lydia Cash.  She loves to be pretty.  She loves pretty dresses.  Pretty lips.  Pretty purses.  And she loves to be TOLD she's pretty.

Pin sites are not pretty.

Given the information I've given you about both the pin sites and Lydia , I am sure you can agree that she was rightly devastated once she looked at the pin sites for the first time.  She refused to have them uncovered.  She refused to look at them.  And if you wanted to/needed to look at them, she must give you permission.  It's her body, so her requests weren't absurd.  We respected that she wanted them covered and got a pink fixator cover for her to wear.  Which she did.  All.  The.  Time.

Enough with the "this process stinks and I can't believe you are doing this to your kid" part of the story.  Let me tell you the bestest part.

But first, I have to tell you about how I can be a horrible person.

After the hospital part, we stayed at the Quantum House for a few days.  It's like the local Ronald McDonald House.  20 families all living on top of one another, sharing a kitchen and common spaces during emotionally trying times.  (So give me a break).  I was in the kitchen having a conversation with a lady from Germany whose family I had grown fond of over the last few days.  We were talking about pins, muscles, nerves, yadda yadda.  There is a third person - a grandma - who is eves dropping into our conversation.  She had a grandson who was seeing the Dr. for a consult and was just being introduced to this life that so many families call normal now.  Eves dropping in this context is 100% completely normal.  Long story short, Grandma starts crying.  In the middle of the kitchen.  In front of my daughter.  In front of me.

I basically wanted to tell Grandma - "Hey, I'm barely keeping my sh*t together right now, so I need you to buck up.  Take it back to your room.  Go break down with someone who can help you.  But me?  I've got nothing to give right now."  I try to be comforting to her.  I really do.

But, I can only imagine the look on my face.  In this moment I was completely judging Grandma for imposing her emotions into my life.

Meanwhile, my daughter amateurishly maneuvers her wheelchair around me parks it in front of Grandma.  As Grandma is crying in the corner of the communal kitchen, Lydia looks up to her and says, "It doesn't hurt.  It doesn't hurt.  Here.  Look." and she opens her fixator cover for Grandma to see.

Before that moment, Lydia hadn't even seen her own pins.  She hid them under sheets, blankets, and covers.  But in that moment, she saw a lady's grief and put her own sadness aside.

Before that moment, I had no grace.  And where I had no grace, this child had kindness. and gentleness.

I pray that she always have the most grace.  The most gentleness.  The most kindness.  I pray that she is always better than me.  And I pray that she realize that these are the qualities that make her beautiful.

Xoxo
AC

The NERVE!

We deal with our fair amount of staring.  Mainly because I'm beautiful and my husband is hot.  But then, you add in the fact that our kid's been wearing a fake leg for a few years and you can see why people would want to look at this interesting family, right?  Now that she has the fixator on - people look just because they don't really know what's going on.  Take this puppy for example:


If you saw this puppy, you would look at it.  Even if you don't like puppies.

It's cute and you really don't understand why he has a jack attached to his leg.  (EDITOR'S NOTE: 1) I don't have an editor.  This is just my way of adding information without completely destroying the cadence of my post.  2) Please understand my sarcasm.  I'm not unnaturally vain. But C'Mon!  That was a funny intro! 3)  That is a fixator on the puppy.  Not a jack.)

But this blog post isn't about cute puppies or even people staring.  Really, it's about the physical nerve that runs through your body.  Currently, Lyd is overcoming some pretty severe nerve pain.  There is a nerve running down your leg that has to be lengthened with the rest of the leg.  If you lengthen the nerve to fast, it gets ANGRY!  Well, we pissed that nerve off.  Nights became unbearable.

Long story short, we had an odd PT time the next day, which lead to a random bump in with the doc, who worked his magic and gave us some relief.  Suffice it to say that the chain of events was completely abnormal for a variety of reasons and was obviously divinely orchestrated.  Why?  Because my God is awesome.

Among other things, we were instructed to slow down pin turns to 3 times a day in order to give the nerve time to heal.  According to my math - and assuming we stay at 3 pin turns a day - that just upped our stay in Florida by more than 20 days.  As the emotionally terroristic girl from 13 Reasons Why would say - F.M.L.  (I'm on Tape 2, if you can't tell).

We had our first real post op appointment last week!  And my girl is now officially back to where we were when this journey started.  Because we gained half an inch - but he had to remove half an inch. . . so here we are.  As I look at the xray, I realize that there is a whole lot going on there.  But just trust me - there is a half inch of new growth there between the two sets of pins in her femur.  Lydia worked her tuchus off for that half an inch.

Finally, I want to say a huge thank you to all those wonderful people who have kept us in your prayers.  Lydia has received cards, gifts, an Easter basket, and trinkets that mean the world to her!  You have no idea what the videos, mail, and packages do for her.  I can't articulate it, so instead, I'll show you.  Now, before someone goes all crazy - it's not grape juice.  It's wine.  And it's not hers.  It's mine.  But I believe that you can tell that - even though it's not hers - the joy of gifts to a child just lifts your soul!  So, thank you.  Very, very much!
XOXO
AC

Long Hair - Don't Care

Hello blogger.  Its been, what?  A year?  Closer to two?  Sorry, I've been doing things.  Important things.  Really, I only activate this status report when surgical years come looming.  First, let's address the elephant in the room.  The fact that I use the term "Surgical Years" in such a nonchalant manner should be concerning.  It's not normal.  But alas, one person's normal is another person's. . . vacation?  I don't know how to finish that sentence.  So, I'll just let it hang out there like that.

We are currently in Florida and will be down here for another 3 months (give or take).  Let me digress for a second.  I'm currently growing my hair out like Rapunzel.  I didn't cut it for a really, really long time.  (Keep following me here. . . I'll get to a point.)  I went to "get a trim" and the hairdresser cut, like 6-8 inches off.  I told her that I wanted to grow it out.  Obviously, she didn't understand me, right?  Well, no.  Why grow hair out if it's just going to be gross?  To have a beautiful mane, it needed to be cut.  I say all that to say this - we are down in Flordia to grow Lydia's leg.  We get to the pre-op appointment for one lengthening and the surgeon tells us that he is actually going to cut out 11 millimeters of her tibia.  Similarly to the version of Amber sitting in the salon chair, I wanted to say, "Umm, I don't think that you understand that we are here to grow the leg. . . not shorten it."  Alas, her ankle is all kinds of wonky too and in order to correct it and move two steps (or 80 millimeters) forward, sometimes you have to take one step (or 11 millimeters) backwards.  I could easily look at all of the metaphorical hair on the salon floor and wallow in sadness, or view this is an awesome blessing that my kid's going to have an extra working joint.  The Cashes choose the latter.

The surgery sucks.  The hospital stay sucks.  She needed a blood transfusion, like 3 days post op, which sucks.  But I would tell you story after story of how she's shown loving kindness to those around her even though she is in straight up pain.  She's met families from Israel, Africa, Poland and Germany; she's learned how to maneuver a wheelchair like Mario Andretti; and she's stared fear/pain/loneliness in the face.  She's 4.  She (and these other kids) are made of steel.

She misses her friends.  She misses her classmates.  She misses her teachers.  She misses her cousins.  She misses her house.  She literally thinks that this will never end.  That she will never walk again.  And that it will hurt forever.  But still she persists.  I dont know what the #Shepersisted hashtag was all about, because I was dealing with other things. . . but Imma drop it - #Shepersisted.

This update doesn't get pictures.  I don't post hospital pictures.  But very soon she will start walking.  Very soon she will make new friends.  Very soon she will discover her "new normal" (as a very dear friend of mine would say).  and very soon you will get to see the feat of engineering that is attached to her body (because you can't NOT see it.  It's huge.  and she's small.)

As always, God shows himself in the pain more clearly than you could ever imagine in the calm.

XOXO
AC

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.