Has it really been 10 days?

We are sorry for keeping our loyal followers waiting and worrying!  These past 10 days have felt like one long, blurry nightmare for all of us.  I have literally stopped in action, looked up to God and said, Why?  Why is this happening to us -- to anyone?  Give us the strength to do this!  Let us know we are doing the right thing!  Good news is, we've made it through what has been described by other lengthening families as the hardest part -- the first two weeks.  This must be the truth because I can't imagine it being harder.  Mariel's iron will has only made it more arduous.  She fights everything.  Unfortunately, there have been many unexpected "hiccups" and "curve balls" for us that we've been told are not the norm, but we've dodged each one.  There have been several times over this past period that I've wanted to blog, but just didn't have the words or energy.  I'll just shoot a few out there and let you use your imagination.  Words such as: mental and physical exhaustion, frustration, guilt, anger, fear and endless worry.  Not to mention the required intestinal fortitude and steady hand needed for some of the daily hands-on wound care that must be performed at home.  Needless to say this has been a major adjustment for us all.  I didn't want to use "Mariel's Rose" as a tool to vent as much as I wanted it to be a source of information about how *great* she is doing.  So I will stop with my rant here and tell you that things seem to be getting marginally better over the past couple of days.  We have gained an essential tool - confidence!  Fear of the unknown is slowly diminishing.  We've got a routine down now and each day we know what to do and what to expect.  The curve balls are not flying about anymore and that alone has helped calm things significantly.   Mariel is reluctantly participating in physical therapy, but she's doing it!  Her muscles seem limber and she's gaining strength.  She is sitting up at the waist and beginning to scoot around.  It is expected that she will begin learning how to walk with her fixator later next week.  Last night she had her first bath in the tub since we left home.  She missed playing with her bath toys in the water so much.  It's the little things that help to normalize this whole experience.  We are trying our hardest to keep our eye on the prize.  We are here to grow bone cells - and that is in fact already happening!  Mariel had her first post-operative x-rays yesterday.  The x-rays revealed that in just the past week alone, since we've begun making first adjustments to her fixator (which we do at home with our trusty wrench four times each day), she has already gained 1.3 cm, or about .5 inches of brand new bone (soft cells that will calcify over these next months).  Miraculous, right?  What a moment it was to see the x-rays yesterday.  There it was right in front of us. All doubts removed.  Reminded by radiographic proof that all of this is indeed worth it and that even if she doesn't know it yet, Mariel will be much better off for it in the very near future!

There's no place like home (away from home)

We've been sprung from the hospital!  Hallelujah!  Yes indeed, when compared to the children's ward, there is no place like home, even if it's your home away from home.  We knew Mariel would turn a corner once the revolving door of invasive intrusions was removed and the comforts of home were added.  Of course, we didn't factor in that Dan and I would now become the first line RN's to be "banished" from our apartment and ordered "never to return."  We've also been told, "you're goin' down" and "that medicine is gettin' flushed."  Yes, our girl is spirited to say the least.  She doesn't seem to care one bit whether Santa thinks she's naughty or nice.  In her book, if he walked in right now, he'd be "dead meat" and "goin' down" too.

Things are moving very quickly around here.  We already had our first physical therapy session yesterday and are scheduled to head back for another today.  Mariel will have PT five days a week.  Mom and dad are required to do the exercises with her at home and on the weekends.  The PT is absolutely essential for successful lengthening.  It keeps her muscles/soft tissue and nerves limber while her bone is growing at an accelerated rate.  Let's just say that lots of little toys (aka bribes) are also essential for successful lengthening.  Our other big "deep breath, we can do this",  is caring for her pin sites and learning to adjust the fixator itself.  We are sure this will all become second nature over these next few days/weeks, but we are quickly becoming schooled in a field we'd never imagined.

We have a check up at the clinic tomorrow and will see Dr. Paley to discuss the second surgery Mariel will soon need.  We only hope that it will be scheduled while Dan is still down here with us -- let's meditate on that one, shall we?  Thanks, you guys are simply the best!  More soon.

And so it begins

Hello friends, thanks for checking in.  First and most importantly, Mariel came through her surgery very well.  After going through administrative procedures, and the inevitable O.R. delays, they took her back to anesthesia yesterday around 10:30 am and surgery began about an hour later.  We were updated throughout that things were coming along fine, but did not see her again until after 5:00 pm.  This we expected.  What we didn't expect was Dr. Paley to tell us that Mariel will need another surgery in about 2-3 weeks.  We'll cross that bridge in another post, once we have more information from him.  The short story is that it will be minor and most likely outpatient.  When we were reunited with Mariel in recovery, she was still groggy from the anesthesia, but she was so goofy, cute and loving.  She didn't seem to have any idea about what had just happened.  That of course changed quickly over the next hour.  It was several more hours before they finally had us settled in our room.  Last night and today have been very difficult.  Mariel is understandably quite uncomfortable, and very angry at anyone (other than mom & dad) who comes near her.  She's got her finger pointed crooked style, stink eye squinted hard and screaming at all RN's to "get their stinkin hands off of her -- you get out of here right this instant and don't you come back - EVER!",  among many other colorful Marielisms.  She spent much of the night and today yelling "get this thing off of me" -- this thing is her "Fixator" (which she is calling her Fix-er-rator).  It is quite a device.  She is having lengthening done on her femur as well as her tibia so the Fixator is attached at her hip and runs the length of her leg with various twists and turns.  It is an intimidating looking machine - serious hardware.  She also has a host of other tubes and monitors attached to her that are all beeping and tangling at any given moment.  Needless to say, getting any quality rest has been near impossible.  This we also expected.  The hospital is just a tough place to be.  As parents, our emotions are all over the place.  It is hard to keep reminding yourself that this is for the best when your child is so miserable, but we know these are the hardest days.  This will get easier and the end result will be worth it.  Now it just feels like the end result can't get here fast enough.  We are full-on in it, ready to hunker down and do what needs to be done to get there.  Looks like if things progress according to plan, we should be discharged Sunday.  This will depend on how Mariel adapts to the pain management plan once her epidural is removed.  We expect that to be tomorrow and will see how it goes.  She is on a cocktail of meds, but they are all IV.  She does not do well with oral meds - AT ALL, so mom and dad need to feel confident we can manage her pain at home before we can get sprung.  They will also be getting her out of bed tomorrow for a trip to the playroom with the PT's.  We need to get comfortable with transferring her from place to place, so we'll be practicing that too.  Some positive last thoughts are that her temp and other vitals look great, she's got an appetite and is eating a bit more -- and I get to go home to take a shower now!

More to come as the drama unfolds.  Again, thanks for checking in on us - and please know how much your emails, calls, texts and facebook posts have meant to us.  We are feeling the love and it makes all the difference!  Be well, friends.

Let's do this

We've made it to Florida and are settled in our home away from home.  We drove to Virginia to board the Amtrak Auto Train to Orlando, then back in the car for a few more hours drive to West Palm.  A first for us all.  Mariel did great, slept the whole night on the train and embraced the excitement of something totally new and different.

Today we had our pre-operative appointment with Dr. Paley's team at St. Mary's.  We were concerned about surgical clearance as Mariel's been working out remnants of a cold.  First worry out of the way, she was given the green light for the main event.  Surgery is a go for tomorrow.  We report at 8am and Mariel will be in the OR from 10am until about 3pm.  We hope to be able to see her soon after, but before we know it I'm sure it will be evening.  We'll do our best to post something afterwards to let you know how *perfectly* everything went.

And, we're off!

An amazing journey is about to begin for our sweet girl, Mariel Rose.  For anyone reading who hasn't been with us on the trip so far, Mariel was born with a rare bone disorder that causes one of her legs to grow faster than the other.  If left untreated, her one leg could grow many inches longer than the other by the time she is an adult.  Mariel currently walks with the aid of a 3 inch lift on her shoe.  By the time she becomes a young adult, her leg length discrepancy (LLD) will become too great to be remedied with a shoe lift.  This conclusion led many doctors we've met along the way to suggest amputation and prosthesis as a possible solution.  Enter the answer to our prayers, Dr. Dror Paley.  We first met Dr. Paley in January 2010 in West Palm Beach, Florida.  He is a world renowned orthopaedic surgeon who is the most experienced at limb lengthening and deformity correction in the United States and world today.  He has pioneered many innovative surgical techniques for the treatment of limb-length discrepancy and has literally written the book on the subject.  As he examined Mariel for the first time, we waited with our breath held for his thoughts.  Hearing his words that day brought tears to our eyes.  He said confidently, "I can fix this."  Finally, after almost two years of devastating consultations with others, we began to exhale.  On December 15th, our tenacious 3 year old will undergo a life changing surgery, followed by a 3-4 month rehabilitation, that will add three inches to her right leg.

We will set out on our trek to West Palm Beach in just a few days.  Although we are excited and grateful beyond words to have found an excellent doctor to help Mariel, of course we are filled with nervousness and worry.  At the same time, we are certain of Dr. Paley's ability and completely motivated by our love for this incredible child, our beautiful daughter who is going to surprise us all.  We hope you will follow along as we do our best to keep information coming through our blog, "Mariel's Rose."  Stay tuned, and please keep Mariel in your prayers, especially on the morning of Thursday, December 15th.  In the meanwhile, you can check Dr. Paley out here:  http://www.paleyinstitute.org/

Our mantra, "We can do this!"

Rose coloredly yours,
Mary, Dan & Mariel