Sunday, April 23, 2017

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

Monday, April 3, 2017

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