Sunday, January 22, 2012

All good things in all good time

Greetings friends!  Lots to share since our last update.  Mariel has come a long way in a short time.  We had our second round of post operative x-rays last Friday, January 13 and they revealed a 4.1 cm gain of new bone cells (2.5 cm = 1 inch)!  Mariel's total discrepancy when we started this process last month was 10 cm, so we are well on our way to equalizing her leg lengths.  The x-rays also showed what Dr. Paley was looking to see happen before scheduling her second surgery.  Friends have been asking what this second surgery was all about.  Basically, Mariel's lower leg bones (tibia & fibula) were out of alignment and needed to be brought to an even place beneath her knee before the doc could proceed with lengthening (fracturing) her fibula.  He set this alignment process up to happen during her December 15 surgery and has been watching the progress over these past weeks.  When Dr. Paley reviewed the Jan 13 x-rays, the two bones appeared perfectly aligned and he said it was go time - or time to fracture the fibula to begin lengthening it.  The second surgery happened this past Tuesday.  I got a phone call 8:30 Monday evening instructing us to report at 5:30 the next morning!  Needless to say, I didn't sleep much that night.  Mostly because of anxiety, but also because I was so afraid I would oversleep!  I was very concerned that Mariel would go crazy returning to the "scene of the crime"-- the pre-operative prep station, where we first took her for the December 15 surgery where you meet with the anesthesiologists, etc.  To my pleasant surprise, she was *shockingly* calm, or in other words, completely out of her (nearly constant) evil queen character.   She even traveled on the gurney back to the O.R. as if it were a float in the Rose Bowl parade, princess waving and bowing to passersby.  Really, she did.  The surgery was outpatient, successful and Mariel has been recovering beautifully this week.  She is already back up on her feet and we have even made the first deduction to her shoe lift height.  Mariel's former lift was about 8 cm.  We had 3 cm removed from it this weekend.  Can't begin tell you how nice it feels to be moving in the opposite direction on the shoe lift.  After three years of watching the lift grow taller and taller, to see it become smaller is more than thrilling! 

Highlight!!!  We also had a last minute surprise visit from Dan this weekend.  He must've sensed I was going over the edge ;)  I'm just getting home from taking him to the airport.  Having him here, even if only for a couple of days, was wonderful.  It gave me a much needed break and Mariel joy that I haven't seen on her face since he left 10 days before.  We had our first dinner out at a restaurant last night and we had a great time.  Mariel resisted the idea at first, but once she was there she really enjoyed herself.  She was glowing sitting at her dad's side -- in a booster seat at the table.   Nice change from eating in bed with a lap tray!  Slowly but surely we are beginning to see some light at the end of the tunnel back to normal living.  We also visited the Quantum House on Friday night (a home similar to the Ronald McDonald House on the hospital campus).  There are several children living there with either their mom/dad/grandparent who are wearing fixators and going through similar recoveries.  We thought it would be a nice idea for Mariel to try and meet/play with some kids her age that she could relate to.  It went okay, but Mariel was a little sassy and less than friendly this first time visiting, so I will try to take her there again this week.  I however, loved meeting the other children and parents and sharing stories/supporting one another.  I look forward to building these friendships over these next months.  Amazing people from all over the U.S. and globe.

Gosh, I miss home/life before and I know Mariel does even more.  I hope everyone is doing great and keeping warm.  We really can't wait to see you all again!  I'll be back with more soon - promise.  Trying to do at least a weekly update.  As always, I love all of the great notes/emails/etc, please know if I don't respond immediately that I do love hearing from you and appreciate your thinking of us very much.  We enjoy hearing what is happening in your life too!  Things have just been a little 'extra' this past week.  Love to you all.

Thursday, January 12, 2012

Put one foot in front of the other

Greetings from Palm Beach, where the weather was a balmy 75 with a giant sunshine today.  Not too shabby for January 12.  Happy to hear it's been a mild winter for everyone up north thus far.  Dan left Monday to return home and I'm especially happy he didn't have to deal with any snow when he got there.  I'm especially unhappy however, that he is no longer here.  He's pretty awesome.  I realize more than ever just how helpful he is to me and how much of a wonderful dad he is to Mariel.  Thankfully, he received an amazing gift before leaving -- getting to see Mariel up on her feet for the first time in 3 and a half weeks!  Monday was a milestone day at physical therapy.  Mariel took her first few steps with the aid of a walker.  Each day this week since, she has walked a few steps further.  She even shot some hoops and played ball with a lovely young lady from the Netherlands (a five year old, also here having her first lengthening).  As Mariel's leg continues to grow, the lift on her shoe will be cut down accordingly.  In other words, as more length is gained in her leg, the lift will get smaller and smaller until she is on even soles.  Pretty cool, huh?  We have our second follow-up appointment with Dr. Paley tomorrow during which more x-rays will be taken and new growth amounts will be determined.  We'll also find out more about the next surgery she needs and when it will be scheduled.  Wish I could say that Mariel is becoming more agreeable, however, she is still in a great deal of pain on and off throughout the day and night.  She also is missing her dad and friends at home.  Needless to say, she is less than happy most of the time.  We've been using FaceTime each night with dad and hope to set up some calls/Skype time with friends soon.

We've gotten a few wonderful packages from the amazing teachers and adorable children of Mariel's preschool program, Five Mile River Nursery School.  Yesterday we opened a beautiful photo album of fall memories from the classroom and personal notes from the teachers.  Mariel was so happy to "see" everyone.  She can still name everyone in the class and can't wait to get back to school.  They have also sent paintings and personal notes from the kids.  She is working on a self portrait to send back to the class -- among some other of her "Mariel masterpieces" as she calls them.  The cards, letters, emails, texts, etc. continue to brighten both of our days and we appreciate them so much.  Thank you!

In other news, my dad, Mariel's poppy arrived last weekend and he will be with us throughout our time here.  My dad loves to cook and he has made us quite a few nice meals already.  This alone is very helpful as caring for Mariel without Dan's help is filling my day more than ever.  We also had a wonderful visit with our dear friends Beth & David, during which we enjoyed amazing sushi and Thai food and even got in a nice walk on the beach.  B&D brought Mariel an entire litter of tiny stuffed kitties, all individually wrapped.  Such a perfect gift for her - she loves little kitties and they even meow!  It was great to see our good friends and have some much needed laughs.

Another highlight this week was that our friends Kate, Tim and Emily Tredwell welcomed sweet baby Paige!  Warmest congrats to them!

Now back to our regularly scheduled program:  Put one foot in front of the other... and soon you are walking cross the flo-or-or!  A little bit harder, just a little bit more, a little bit further than you've gone before.

Wednesday, January 4, 2012

Happy New Year!!!

Hi everyone, it's Dan here taking a turn blogging on Mariel's Rose.  First things first: Mary and I want to wish everyone a very happy new year!  This has been a bizarre holiday season for our family to say the least.  We departed for Florida on December 11, and with everything we needed to do before we left we didn't even get around to sending out holiday cards this year.  We hope all of your holidays were wonderful and that all of our friends and family have gotten off to a fantastic start to 2012.

We also want to thank and acknowledge all of you who have reached out to us during the past few weeks.  So many of you have sent cards and gifts to Mariel, going above and beyond the call of duty, and we really can't thank you enough!

We just have to mention specifically that several of Mariel's Possum Lane friends contributed to a little photo album that our next-door neighbor Kelly so graciously organized (unbeknownst to us).  The gift was wrapped with strict instructions not to open it until Christmas.  When we opened it we discovered that it included photos of our house, photos of each of the children and artwork and personal notes from each of them.  Mariel lit up when she opened this gift and has asked to look through it several times since.  This really brought a tear to Mary's and my eyes.  What a touching, thoughtful gesture.

We also must send HUGE THANKS to Mary's sister Janine, her husband Craig and their precious daughters, Julia and Samantha, who literally brought Christmas to us in Florida.  They showed up at our condo on Christmas morning with a Christmas tree (which was decorated in record time by the girls), an enormous amount of food and tons of beautifully wrapped presents for Mariel.  Mariel was genuinely excited all day long to have her aunt, uncle and cousins (with whom we traditionally spend Christmas) here at our "home away from home," and they really made it feel like as normal a Christmas as it could possibly feel under the circumstances.  Thank you from the bottom of our hearts -- we will be forever grateful.

Our days caring for Mariel have normalized to some extent.  Our primary daily events are physical therapy every morning and the one we *all* dread -- wound care -- every evening.  Surrounding these events are a plethora of less burdensome, but vital, responsibilities such as medication/pain management and our four-times-daily fixator adjustments (which is how we're actually growing Mariel's femur and tibia).

We have started to venture out and try to have some fun for a few hours here and there, the biggest challenge being that Mariel is not mobile and has to stay in her jog stroller whenever we're not at home or in the car.  We had a truly wonderful lunch a few days ago at an excellent, funky restaurant (with a terrific beer menu) up in Jupiter called Little Moir's Leftover's  Cafe.  Thanks to Servando, one of Dr. Paley's amazing assistants, for the fabulous recommendation.  Servando also recommended DuBois Park in Jupiter where the waves and current are gentle.  We enjoyed a few hours there and plan to take Mariel in the ocean when the air temperatures warm up (we're currently experiencing a cold snap) as seawater is highly recommended for pin site healing and disinfection purposes.

We also spent a few hours on Saturday (New Years Eve Day) at a fantastic park just 10 minutes from our condo, John D. MacArthur Beach State Park.  This place is simply amazing, with fantastic trails, an awesome 1/3 mile boardwalk/footbridge that crosses the inter-coastal waterway (see pic), and absolutely beautiful beaches with tons of seashells.  We found this park to be so serene -- "just what the doctor ordered" -- and we'll definitely be going back soon!

Other than all of the medical challenges, the biggest "stressor" for us all right now is that my time down here on this visit will be coming to an end this Monday when I have to fly home to Connecticut and get back to environmental law and teaching, leaving Mary and Mariel here in Florida to continue the *really hard* work of growing bone.  This will be difficult for our family on so many levels.  As difficult as it will be for Mary and me to be apart for weeks at a time (I know I will miss her like crazy), I'm confident that we will handle the separation just fine.  I'm most concerned about separation anxiety for Mariel who is used to spending "quality time" with her dad at a minimum every morning and every night during the work week.  Over the last month we've literally been together 24/7 every single day.  She has truly become a daddy's girl, and I worry about how she will handle not seeing me for 3 weeks, especially in light of what she's currently going through medically (Oh, who am I kidding?  I really worry about how *I* will handle not seeing *her* for three weeks!!!).  We plan to keep in daily touch using Facetime and Skype, and our time apart will just have to be one more challenge that we will all conquer together as a family.            

Friday, December 30, 2011

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!

Tuesday, December 20, 2011

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.

Friday, December 16, 2011

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.

Wednesday, December 14, 2011

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.