Femoral Plate Removal

Today was our daughter's much anticipated femoral plate removal.  It is accompanied by a sense of satisfaction, as it feels like this plate removal completes a course of treatment that began 18 months ago.  That timeframe may not sound long for adults, but this accounts for approximately half of our little hippie's life thus far.  She still has ongoing needs and about 15 more years at Scottish Rite... but we are breathing a svelte sigh of relief today.

As we dressed this morning, Daddy sang the Cheers  theme song.  After her assorted surgeries and day surgery procedures, today was Hip Chick's sixth OR visit.  Our routine has morphed into a "knee-jerk" series of motions.  I always wear a pendant with her birthstone, inscribed with her name, to the hospital.  The Admissions Rep who checked us in this morning was the same woman who humored my Twelve Drummers Drumming request from Hip Chick's final cast-off last December- she has admitted us on several occasions.  We never eat before we leave home or before she is wheeled to surgery, out of respect for her NPO orders.  While she is in surgery, we always order the same omelettes from the same cook in Scottish Rite's Crayon Cafe.  Today's day surgery nurse had cared for Hip Chick on previous visits.

We always carry the above buzzer while we wait.  If I were a more enterprising woman, I would concoct a means to hang it around our necks- like a VIP pass.  A thought, perhaps, if we have six more of these in our future.

I asked Daddy: "At which point does routine transform into ritual?"  (Or perhaps ritual with a hint of superstition?)  After a deep swig of coffee, my thoughts tacked on a footnote regarding the benefits of a highly caffeinated parenthood...

Fast forward to Hip Chick's appointment.  Much to everyone's delight, Hip Chick presented us with her best disposition to date.  She relaxed while in pre-op with a new favored doll (at top).  Now that Hip Chick has a weekly dance class, she keeps her ballerina close and her ballerina kept her company during surgery today.  Hip Chick willingly swallowed her dose of "goofy juice" and smiled as they wheeled her away.  Upon return from the OR, she snoozed peacefully in my lap.

Her surgeon provided us with the option to retain her femoral plate.  This had not previously crossed our minds, but we accepted the offer.  Scottish Rite sterilized it and bagged it for us (above).  It is, after all, due a bit of gratitude... it held our daughter's femur together as it healed for the past 10 months.

As for today's results, we were excited to see that Hip Chick did not return to us in a spica cast.  There was a small chance that she would need one if a complication was discovered during the procedure.  I found myself gritting my teeth oh-so-slightly as they provided her a choice of cast colors before surgery... just in case.  Daddy and I much prefer the bandage currently residing on her leg to a sixth cast!

So what does all of this mean?  It means that she continues to heal and recover as planned, which is exciting!  Her load bearing restrictions are "as tolerated" until her checkup, with no high impact activities for four to six weeks.  These are standard restrictions after femoral plate removal.  After her post-op checkup next week, she will resume her quarterly imaging and physical appointments in the fall... her progress still has to be monitored to determine whether she needs another major intervention before her fifth birthday.  This continues to match the course outlined to us by her surgeon last fall.

I neglected to note one detail of our surgery rituals above:  For each major hip dysplasia treatment, we give Hip Chick a fairy figurine from a favorite collection.  Today's figurine is the Flower Fairy.  It appears that the fairy is climbing her flowers- much like Hip Chick climbing Scottish Rite's playground, as pictured in yesterday's post.  Each night, we wish her "sweet dreams of fairies" as they line her chest of drawers to watch over her.  The expansion of her collection has been bittersweet, but we have tangible hopes that this will be the last one for the near future.  

Discharged home, with no complications, no cast... and we have no surgeries scheduled for the first time in 18 months!  Hip Chick received her best possible outcome today... and we parents could not be more proud.  Sweet dreams, indeed.

Quarterly Check Up- July 2014

Happy summer!  We have been busy in the Hip Chick household and hope your summer has been as eventful as ours.  Mommy opted to take a blogging sabbatical for the past three months... but we have a plethora of news to relay and have returned with a midsummer's blog.  This has been a happy time for Hip Chick, as her mobility gains accelerated and some exciting milestones have passed.

First milestone was our family's maiden Disney cruise!  It was decided that, after all she experienced in 2013, no one deserved to meet Mickey and Minnie more than Hip Chick.  Mommy had read other 'hip' moms' experiences regarding their hip kids' (in)ability to manage active days post-surgery/casting and wondered whether Hip Chick would straggle behind... but not our little hippie!

We enjoyed two days at the beach, swam most days, and met every Disney character we spotted on ship!  Any volatility on behalf of Hip Chick was more due to too much fun and too little sleep some nights rather than mobility concerns. 

Our vacation was followed by Hip Chick's third birthday!  This was extra-special for our family, as this was the first birthday that she could walk.  Not only walk... she jumped and bounced her heart out at a local bounce house event center.  It was only befitting that she requested a "Brave" theme, as our spunky little princess certainly acted far more like Merida during all of her surgeries and casting last year than Sleeping Beauty.

After her birthday, Hip Chick enrolled in two activities:  her first cooking class and her first weekly dance class!  We naturally cook at home, as Mommy has a passion for cooking.  As we couldn't enroll her in sports this spring, cooking seemed to be a natural fit.

While casted last year, she would watch her little friends attend dance class and then sadly ask when she would be able to dance, too... so the news that we enrolled her was met with grand excitement.  Her first "dance" was to the Pharrell Williams hit Happy and I cannot think of a more fitting welcome.  She has learned to gallop, is crawling through tunnels, and is jumping!  Her dance instructor advised that Hip Chick's standing locomotor skills are fantastic, given her medical challenges.  Her opportunity lies in some of stretching motions the group begins class with.  Namely, she cannot fully draw her left knee to her chest and sometimes compensates with unusual positions on her left side.  At home, this means she has difficulty putting her left sock and shoe on and pulling them off.  Which leads us to her quarterly imaging and physical in mid-July.

While we have enjoyed a significant reduction in her medical needs this year, her July appointment was met with much anticipation.  Not only was this appointment to check her hip's progress, but to also discuss her upcoming femoral plate removal (day surgery).  When we informed Hip Chick of her upcoming appointment, the first thing she mentioned was Scottish Rite's popcorn machine.  Scottish Rite was certainly wise in integrating that sunny spot into its culture.  Mommy would much prefer that her knee-jerk reaction to Scottish Rite is over popcorn than a series of medical procedures.

As usual, we began our appointment in Radiology.  Hip Chick surprised us all with her best xray to date!  Some of our avid readers may recall tales from prior blog posts of three or four adults working together to restrain her for an xray... but those days are (hopefully) behind us.  Now, she can look at an xray and talk about the bones inside her body.  While 18 months is a relatively brief time for us adults, it makes a big difference in a young child's experience.

After a short wait and vitals, Hip Chick met with a Nurse Practitioner.  She performed a few physical tests to determine her range of motion.  Later, she returned with our daughter's surgeon and his team, which included additional physical tests.  We learned that her femur appears to have healed nicely and her femoral head remains in socket.  It remains a little low... but, as mentioned in her last quarterly update, there is time for this to rise into a mid-socket position.

We asked about her dance instructor's observations.  Her surgeon questioned whether her new hip socket has developed a minor "ridge" or "lip" which is limiting her left leg's range of motion as described above.  As with her femoral head's placement, he suspects this will smooth out over time.  Her mobility gains are still very positive, however.  She would have been unable to run, jump, or gallop without surgery and casting, so Mommy and Daddy remain very encouraged with her news.  (The climb above would have been impossible without medical intervention.  Thank you, Scottish Rite!)

We celebrated with a little playtime on Scottish Rite's newly renovated playground.

And so we have another day surgery to go.  As part of the osteotomies last year, a plate was placed onto her femur to stabilize it for recovery.  Adults may have the option to retain any such hardware placement, but young children need these sorts of things removed to prevent any hindrance to growth.  Her surgeon doubts that a spica cast will be necessary for recovery (Whew!).  He advised that the total healing time is approximately three years, but the immediate risk of refracture is during the first few weeks following removal... it appears that our biggest opportunity for this recovery will be making her rest!  She will remain home from preschool for the first couple of weeks to prevent any irresistible temptation lurking at the playground.  A couple of weeks at home as opposed to last year's 26 weeks of casting?  Challenge gladly accepted!

Post Osteotomies: Seven Month Recap

As we close April, our daughter is seven months post salter (pelvic) and femoral osteotomies and four months post spica... and boy, is she moving!  Most of our news was covered in my last post, but there are a few details to relay.

1.  After cast off last summer, Hip Chick sported shaggy legs... is the extra fuzz still there?

No!  We were advised that her body grew hair to help protect itself from the cast and it fell off over the past few months.  

2.  How are we managing any remaining limitations?

She needs to practice reaching her left foot.  We struggle in coaxing her to do things such as take off her left shoe... but left alone, she will do so on her own terms.  

3.  Have we enrolled her in any enrichment activities?  

With the femoral plate removal scheduled in July, we are waiting until fall.  We see no need to begin an activity she will need to rest from for a month.  Two activities we are eyeing are swimming and/or music lessons.

4.  What play activities are we allowing Hip Chick to attempt?

Most recently, we took her to a friend's roller skating party.  She used the "walker" they offered for new skaters, but felt most comfortable using the walker on a carpeted area (as opposed to the rink).  Playgrounds and play pals are all game!

5.  Do we anticipate any potential summer plans to be hindered by her hip?

Not at all!

Quarterly Check Up- April 2014

Today was Hip Chick's much anticipated check up.  We were uncertain what news to expect, but approached with a mix of hope and reservation.  We knew her mobility is still lacking, but what would her xray show?

We entered the hospital and were immediately greeted with the familiarity of the popcorn stand.  Daddy recently volunteered for an on site game nite and was advised that Scottish Rite opted for the popcorn service upon first opening so that it would not smell like a traditional hospital.   It always lifts Hip Chick's spirits.

Hip Chick inspected each aquarium and model train display along the path to Radiology.   We viewed today's xray as a success- she cried, but we did not have to hold her down.  (Some previous xrays have resulted in three adults restraining her to obtain a clear image.) Two takes today and we were finished.  She earned a roll of stickers and several high fives.

We munched on popcorn while awaiting the results.  Regardless of aromatics, the crunch and pop of a hot, buttery snack helps to alleviate nerves.  Soon we were escorted to an exam room and familiar faces.  Our nurse practitioner spoke more excitedly about the imaging results than Hip Chick's surgeon, but her introduction helped break the ice.  And the results?

Hip Chick's new socket is as her surgeon expected, which is good.  Her femoral head still sits a little low against the hip socket.  There is time for this to rise into socket, but it will likely need to push out some cartilage out in the process.  This is not bad, but also not ideal- we will need to monitor.  Her left leg's range of motion is still compromised.  She has functional mobility, but we still need to monitor for improvement.  If/when her gains stagnate, we may consider physical therapy.

So what happens next?

Our little hippie has another xray and physical in three months.  This will be closely followed by a day surgery to remove the femoral plate which remains from last September's osteotomies.   Our biggest news of the day:  if there are complications with the plate removal (ex: bone overgrowth), she may require another spica cast for recovery... but this would only be a two week casting assignment.

Surgery aside, we will also begin looking for signs of avascular necrosis at her next appointment.  This is a disturbance in blood flow, to the femoral head in Hip Chick's case.  She shows no signs of this now, but it can develop anywhere from nine months to two years after surgery.  Avascular necrosis could cause growth issues for the femoral head, so its growth will be monitored.

To reward Hip Chick's good behavior, we swung by a favorite local custard shop.  Another three months before resuming her medical agenda is quite the gift... but we feel that today's appointment brought us cautious results.  Our frozen treat won the sweet award for today... but as always, we continue to think positively.

Princess For a Day

Hip Chick has a big appointment scheduled this week.  We have enjoyed the three month reprieve from her myriad of medical assignments... but, alas, the respite is drawing to a close.  But first:  A bit of fantasy.

We in the Hip Chick household are preparing for a visit with a celebrated m-o-u-s-e in the coming days.  After a 2013 filled with traction, two major surgeries, four day surgery procedures, and a total of 26 weeks in five casts, it was decided that we all deserved a vacation- especially Hip Chick.  Details were double and triple-checked prior to solidifying reservations... and yet imagine our surprise when we learned that a two week technicality may disallow Hip Chick from realizing her bippidi-boppity dream as a famous book-loving, yellow-gowned princess!   

When a member of our local renaissance fair heard of this unfortunate setback, she was aghast... there is no "age limit" on becoming a princess!  A special part in an important ceremony was lovingly planned for our little hippie and off we set, for a strange, new land, filled with magic and fantasy:

Neither Daddy nor I had previously visited this mysterious land and so our little hippie's princess inauguration was an adventure for all three.  I cannot pinpoint with certainty what our expectations were, but they were certainly no match for what awaited us.  Fairies... check!  Gandalf... check!  Whip cracking contests, turkey legs, medieval speech, kilted men, human chess boards, glass blowing, and jousting... all check!

We began with a visit to Scottish Court, for conference with the Queen.  Hip Chick was invited on stage.  After a promise to eat her vegetables (even the yucky ones) and an extra sprinkling of magic dust... *poof*... we had Princess Hip Chick!  We were curious as to whether she would shy away from the celebrity, but Princess Hip Chick gleefully waved and exclaimed, "Mommy, Daddy... I'm on stage!"  After standing with the Queen's Court and dancing on the human chess board, Princess Hip Chick held hands with our guide, a certain honorable Lady, as she began exploring the strange land.

She met another Queen and Prince's acquaintance.

Knights bowed before her, exclaiming their honor to meet the Fair Princess.

She shielded her snowy white skin (come on... this blog entry begged for that quip) with a beautiful parasol.

We crossed paths with a fairy who granted an extra special sprinkling of dust and soon our little hippie donned wings to become a fairy princess.

However prim and proper the fair maiden may have been dressed, the truth of the matter is that she begged for the largest and most dangerous ride she stumbled across.  We attempted to substitute the excitement with an elephant ride (what magical land doesn't feature elephants and camels down the street from Mermaid Lagoon?), but Her Majesty had a royal meltdown when the elephant's ear flapped her leg at the ride's end.

Princess Hip Chick regained composure by joining every drum circle she found.  No matter how dressed and fussed over, our little girl will forever be more of a hippie than princess. 

She also wanted to crash a young lady's gypsy dancing performance, which is where Queen Mommy drew the line.  (We failed to snap a pic, but the young lady also balanced a sword on her head... and princesses do no such thing!)

A very special day, indeed.

And now we have the appointment.  There is a smidge of angst heading into it, as this week's xray will be the determining factor for the remainder of Hip Chick's year.  At best, she has a day surgery this coming summer, to remove the femoral plate which remains from last September's osteotomies.  And if her xray shows that her hip is redislocating?  Well, I feel safe in saying that nearly every 'hip' parent I have crossed (whose child was diagnosed late) has these sorts of roller-coaster experiences.  As always, we think positively.

Post Osteotomies: Six Month Recap

Time has flown!   Hip Chick has completed six months since her pelvic and femoral osteotomies and three months since cast-off.  We have enjoyed a much-deserved hiatus from last year's succession of appointments and procedures, but are preparing for an upcoming checkup.  Below are our latest thoughts.

1.  How is Hip Chick's mobility?
She still displays a marked difference between her left and right side's mobility.   Most recently, she has gained a notable amount of speed.  She is almost running.  She still cannot fully (un)dress her lower left side, but she can accomplish what she sets her sights on.

2.  How is her overall disposition?
She is a boisterous, defiant, imaginative, busy, energized little girl!  We had read that some other children have had difficulty maintaining pace with their peers, but we are hard pressed to wear her out.  She is obviously catching up on lost time!

3.  Prior posts indicated lingering issues with nightmares... has this continued?
She does not seem to have any unordinary sleep issues at this time.  Every night, she still claims to dream of fairies and flying- which is a holdover from the fall casting phases.  She occasionally has a bad dream, but never mentions her surgeries or casting when we discuss the dreams with her.

4.  Does she show concern over her scars?
Hardly.  She will talk about her femoral scar on occasion,  but never her pelvic scar.  We tell her that her scar is where her doctor helped make her leg and hip better.  She seems happy with this explanation and can repeat it back.

5.  She transitioned into her childcare center's Lower Preschool class early this year- how does her development compare to her peers?
She has now caught up with her original classmates and has rejoined their class!  She is starting to tell us which sounds letters make and is learning to spell her name.  She is two months from her third birthday and I just bought her 48 piece puzzles to work on at home.  Clearly, physical disability does not automatically implicate a child to mental disability.

6.  Is Hip Chick enrolled in any enrichment activities at this time?
We would love for her to enjoy dance or swim classes with friends, but we felt it best to wait.  Her surgeon advised her hip would be stiff and her mobility would incrementally improve for at least six months post-casting, if not nine months and beyond.  We will wait until she recovers from her femoral plate removal to enroll her in activities beyond her standard preschool curriculum.

7.  What is next for Hip Chick?
She has an xray appointment at Scottish Rite in about two weeks.  Her surgeon will check her hip's positioning and discuss more firm timing for her upcoming femoral plate removal.  Her imaging results will help determine what additional needs, if anything, she may require this year.

Gold Medal

One year ago today was one of the most difficult days in our life.  One year ago today, Daddy and I awoke with much dread and hardly choked back our tears through the day.  One year ago today... Hip Chick was placed into traction for the onset of her DDH treatment.

Yes, it was the beginning of a very challenging year... and look where Hip Chick is today!

With this anniversary in mind, it may seem odd timing to bring sports into discussion, but I cannot think of a more appropriate topic.  Big Sis, Hip Chick, Daddy and I welcomed the recent winter olympic opening ceremonies (hosted in Sochi) with a bit of festive cheer.  We snuggled together in our living room, drinking sbiten, a popular Russian mulled honey (or wine) drink, recipe here:

Sbiten Recipe

And indulged in a little chocolate babka.

As we watched the parade of nations, we cheered the world's greatest athletes.  Undoubtedly, each of them has overcome great odds to reach this competition... yet the question begged itself:  "Which olympians overcame even greater physical odds than their typical counterparts?"

Today's post is dedicated to some of these athletes, who I discovered in my oh-so-humble scientific method of internet surfing.

1. Natalie Du Toit, link here:  Amputee Swimmer
    Ms. Du Toit was the first female amputee in able-bodied olympics.

2. Kieren Perkens, link here:  Swimhero
    Mr. Perkens began swimming at age eight, as rehabilitation for a serious leg injury.  He later became one of the world's greatest long-distance swimmers.

3. Greg Barton, link here:  Gold Medal Kayaker
    Mr. Barton became a double gold olympic winner despite being born with two club feet.

Those featured above are a just a short list- there are many more athletes who have overcome remarkable physical hindrances to excel their full-bodied counterparts.  A popular commercial playing during the current Olympic games recognizes the parents behind today's Olympians.  I think the parents of the Olympians listed above (and those like them) are the true heroes.

This is appropriate timing, as I have recently come to a level of acceptance regarding Hip Chick's physical condition.  As you watch her play, it is obvious that her left leg does not match her right leg's fully mobility.  She obviously favors her right leg.  But it does not slow her down.  She can twirl, climb, and "run" to her own content.  She is happy.  She is capable of achieving what she sets her sights on.

 I have often remarked to people that Hip Chick has the personality and drive to compete despite a physical disability, if that were to be here calling.  As mentioned before, the day she was diagnosed with hip dysplasia, her classmates held a race.  Hip Chick was inconsolable that she did not finish first... and she did not finish last.  Exactly what will a little girl who outran her classmates with a dislocated hip achieve? 

Still, it is too early to tell whether she will ever truly "run."  She may never compete for her high school team.  I am confident, however, that she will achieve happiness.  And that is worth cheering for each day. 




 

Post Casting: Two Month Recap

Welcome to our newfound slice of "normalcy."  Two months have passed since cast-off and life has begun to settle a little.  Is life what we imagined it would be?  That is difficult to verbalize... we could not envision what Hip Chick's future would hold.  

Big Sis was at our home this past weekend and we enjoyed what is growing into a tradition... game night!  Big Sis cooked dinner (with a little help) and delighted all with a bit of trickery.  As with many games, things were not exactly as they appeared.  Crushed potato chips masqueraded as breadcrumbs... fruit slithered as snakes... cereal molded into dessert.  Such a far cry from our Saturday nights three months ago.  We look forward to building on this in the coming months!

Below are more recent thoughts.

1.  How is Hip Chick's mobility?

Her gains have slowed, but she still improves incrementally each week.  She still will not bend her left knee while reaching for her left foot, in example, but she does bend it a little more while walking.  She attempts to run, but cannot... it is a very quick walk, though!

2.  How is her transition into the lower preschool class?

This feels like her most difficult class transition to date, as she is able to verbalize that she misses her prior class.  We asked her new teachers for feedback on the transition and they relayed that she spends a significant amount of time in their play kitchen (an interest she comes by honestly) and she is quite good at puzzles.  Mostly, she loves playing with her friends!  Seems like a typical preschooler to us.

3.  What advice do we have to relay from this stage in Hip Chick's DDH treatment plan?

A colleague was recently chatting with me about Hip Chick's hip dysplasia and the subject of unsolicited advice arose.  She remarked that one of the difficult aspects of parenting is, generally speaking, that people tell you how you should raise your children and will offer opinions on just about anything you may do.  She said the wise parents recognize that they alone know their children well enough to make those judgement calls... but will still smile and politely thank others for their advice.

I think that is fantastic advice for we "hip" parents.  Daddy and I received lots of remarks about everything from Hip Chick's habits to her diet and more last year.  Some people thought she carried her pacifier habit for too long, for example... yet, when she dropped it she did so without struggle.  Alternatively, there are some children who barely or never use one and carry a thumb sucking habit into grade school.  

So, do what you believe is best for your child with your head held high!  No one knows your child, especially your "hip" child, better than you.  And that is exactly how it should be.

Big Girls Don't Cry

Hip Chick has incurred quite the "big girl" transformation since last month's cast-off.  Prior posts refer to potty training, but that is only one piece of her maturation jump.  Her transition out of the upper toddler class into her  new lower preschool class took only two days as opposed to the five we had planned.  Everyday tasks that previously warranted assistance are now preceeded with a firm "let me do it," as she wants to do it all for herself.  

We had recently noticed that her quilt was no longer covering her as she tossed at night and so we took her shopping for "big girl" bedding.  Her pastel owlette nursery decor has now given way to polka dots, peace signs, and bright stripes- selected by Hip Chick herself.  The last pieces of her nursery bedding are now stowed out of sight.

The final nail in her toddlerhood coffin came in the form of a very special invitation:  Big Sis's first sleepover party at her other house!  Hip Chick responded to the news with gasps of "WOW" and she informed everyone who would listen about the special event.  I had wondered how she would respond to a party filled with older girls, but she held her own nicely- with a little help from Big Sis.  She fed off of their energy and squealed as she scampered after them.  She yelled, "Let's go, girls!" as she attempted to lead them into new rooms.  She held her own pizza slice instead of asking Mommy to cut it, she let Big Sis give her a kitty cat makeover, and she watched a movie with the group.  We drove home at her usual bedtime, but she wore pajamas for the party  just like all of the big girls.  Very grown up, indeed.

This blog is not entitled "Big Girls Don't Cry" because of Hip Chick... but because of my own feelings regarding this transition.  It is easy to feel that last year's extensive back-to-back medical plans stole away her last remnants of babyhood.  She did not really crawl and she has never run.  She has not yet been able to walk on a birthday.  During a time in which many tots plead for cuddles, we had a physical barrier of five casts.  But the timeline for such things is short and those days are forever behind us for Hip Chick.  She has transitioned into a spirited, beautiful, intelligent, imaginative, little girl and we could not ask for a better Hip Chick than the one we have!

To reinforce this point, she accompanied us parents to a very grown up outing today.  Our favorite museum is hosting a traveling exhibit of animals, deconstructed to their bones, muscles, and organs.  I had wondered whether Hip Chick may be any more squeamish than me, but she seemed to enjoy the exhibit.  We stumbled upon a human skeleton and took the opportunity to point out her hip and discuss a little more of what the doctors needed to fix to help her feel better.  Hip Chick was more fascinated by the exhibit's bull.

Mommy and Daddy found many points of interest in the exhibit, but perhaps their photos are not all appropriate for a child's blog.

Afterward, we took her to Dallas's Klyde Warren Park.  The park had opened just a few months before Hip Chick's diagnosis and we had been unable to visit prior to.  As the city soaked up unseasonably warm weather today, we treated ourselves and Hip Chick to a little extra sunshine.

Hip Chick ate her first lunch from one of the gourmet food trucks lined against the parks' border.

But she was more thrilled with a rare dessert treat of a cinnamon toast cookie and vanilla bean ice cream sandwich.

She wrapped up the visit by splashing and twirling through the kids' wading pool.  Such a happy girl today. 

Today's string of outings ended with another trip to the shoe store.  Hip Chick had been complaining that her shoes were hurting and so I wanted her feet remeasured.  Imagine our surprise when we learned that she needed shoes two sizes larger!  Two sizes?!  Alas, she just received her sparkly shoes last month... but perhaps there is a bit of a gift in the news.  This past year, we missed all of her growth spurts, as they each occurred within the confines of her spica casts.  Now, we have seen one before our very eyes!  Our grown up girl.  Perhaps it's okay for me to cry just a little.  As long as they are happy tears.

Post Casting: Six Week Recap

This week is a notable week.  Not only has Hip Chick passed six weeks since cast-off and pin removal, this week marks exactly one year since her diagnosis.  One year.  Four weeks of traction, two major surgeries, four day surgery procedures, four spica casts, one petrie cast... and, as her surgeon keeps reminding us, her journey has just begun.

I took a much-needed hiatus from blogging the past two weeks, as a mental break was in order. As a promising xray granted Hip Chick a three month reprieve from the ticker tape of medical appointments, we are building the beginning of our new "normalcy."  What that means exactly- I cannot say.  Neither can I predict for how long it will last... but isn't that the case with life in general?  Always a balancing game.

Below are current thoughts:

1.  Where does Hip Chick's mobility stand currently?
She is mostly improving upon her speed- and she is quick!  She is bending her left knee a little more, but it remains stiff.  Her range of motion on the left side remains limited.

2.  Mobility aside, how is she progressing developmentally?
She is transitioning into her childcare center's lower preschool class this week!

3.  How does potty training fall into her developmental progress?
Many people had asked about potty training during her treatment last year.  First, there is no productive way to attempt potty training with a child whose lower extremities are casted.  Weighing the options of "potty train to fit others' ideas of what her life should be" against "delay treatment and increase her potential for a hip replacement before age 30," we were happy to take on the silent judgement.  Yet... Hip Chick asked that we start letting her sit on the potty just over a week ago and has had a few successful attempts.  She will be just fine!

4.  Does she still experience pain?
Yes- at times.  Her complaints usually center on her femoral plate.  Twice, she has slipped or slid and stretched her left leg more than is comfortable.  These are infrequent concerns.

5.  Is she enrolled in any "extra curriculars?"
Not at this time.  We had originally considered a "Mommy and Me" water class for the spring, but her left leg's mobility seems too weak for that at this time.  We will revisit the topic after her femoral plate removal this summer.

6.  How are we dressing her?
She has worn leggings a few times, but we will shy away from jeans or rigid pants for the foreseeable future.  Soft fabrics are key!

7.  Have the sleep issues subsided?
They remain, but are improving.  Hip Chick's surgeon advised us that lingering nightmares are common, so we expect a gradual resolution.

8.  Will the blog continue?
Why, yes!  We hope that her most difficult days have passed, but the journey is young and unpredictable.

CELEBRATION!!!

Hip Chick's follow up appointment was this morning and, boy, are Mommy and Daddy smiling!!!  We received the best news we could hope for at this stage in her development... which means that a grand celebration is in order!

Hip Chick's femoral head is positioned a little low in her hip socket, which is common.  This allows her femur opportunity to "rise" into the socket for an appropriate fit.  Mommy had been a little concerned, as Hip Chick's left kneecap looked low compared to her right one... and now we know why!

Her pelvis has healed appropriately.  Her stiff limp of a walk is normal for her type of surgery and medical condition.  She will continue to walk with a limp for six months post-surgery and even beyond.  Her surgeon advises against physical therapy, as it is customary for physical therapists to "stress" the body part they are rehabilitating and he does not want that for this specific healing process.

In short: she looks great!

So... what lies ahead?  Our little hippie can wait three months until her next appointment.  She will have more imaging at that time.  The surgery for her femoral plate removal will not occur until early summer.  Should her femoral head remain in socket over the next year (and her surgeon feels encouraged that it will), the next "milestone" will be at age four.  If her newly created hip socket does not grow appropriately between now and then, we will discuss another surgery at that time.

Three months between appointments... hope for no major surgeries for the next 14 months... a hint of optimism from her surgeon... it is all Mommy and Daddy could have wished for!!!

We still have work to do to help her, but this is happy work.  She was diagnosed one year ago this month and we finally have tangible hope for the near future.  (Anyone else ready to bust out the Rent theme song?)  Her surgeon reminded us today that we still have 15 years together to treat this, but we are all happy for today.

Happy New Year, indeed.

Post Casting: One Month Recap

Happy New Year from the Hip Chick household!  One month has passed since cast-off and the new year has brought us renewed hopes for our daughter's medical future.  What do the months ahead hold?  As the future is uncertain, we opted to ring in the new year with a bit of celebration.  Big Sis spent added time with us through the holiday, which helped bring extra merriment to the occasion.

We kicked off the evening with our traditional New Year's Eve dinner and a family board game- Candyland.  Hip Chick threw up her fists in celebration of each card  drawn and Big Sis giggled from the special fizzy juice in her pink flute.  Before Hip Chick was too tired, Mommy wrote each family member's New Year wish on a card and sealed it for the year to come.  They are safely stowed on our mantle, in hopes of their realization.

While I won't divulge most of our wishes, Hip Chick's wish reminded me of a prior holiday with Big Sis.  We were in our place of worship, celebrating the world's creation in a children's service.  The children were encouraged to think of a birthday wish for the world and then invited to say the wish aloud, on cue.  Big Sis made us laugh aloud quite heartily... she wished for cheese.  Hip Chick did not wish for cheese, but she did wish for fairies.  How couldn't the world be a better place with more cheese and fairies? Perhaps we should all wish with a child's eyes once a year.

Hip Chick put herself to bed by 9pm and Big Sis barely made it to midnight... but the new year arrived regardless.  We celebrated the next morning with our tradition of homemade beignets... made by Mommy!  Alas, there are no photos, as they were gobbled that fast.  A sweet beginning, indeed.

Below are our latest "hip" thoughts.

1.  At one month post-spica and four months post-osteotomies, how is Hip Chick's mobility?

She can walk, crawl, and climb, but leads mostly with her right leg.  She is trying to figure out how to jump.  The range of motion in her right leg is just as before, but the left is still coming along.  She walks with a very pronounced limp, but her surgeon advised she would do so for approximately six months post-spica.

2.  Have we needed any aids to help encourage her progress?

Her surgeon had cautioned against pushing her further than she is ready to progress.  With that said, we do want her to be proud of her legs and gait.  She wore patterned Rock-a-Thigh socks while her legs were still sensitive and the weather wasn't too cold.  Mommy had also promised her "sparkly shoes" once she could walk again and the ones above were some of the sparkliest of Stride Rite's line currently offered on Amazon.  When she walks correctly, they reward her with muticolored, blinking lights shooting along their sides.  The effect is as hoped.  She stomped alongside one of her teachers on Friday, exclaiming, "they help me stomp like a dinosaur!"

3.  How are the sleep disturbances progressing?

A very wise person questioned whether any portion of our sleep issues could be managed with a smidge of added motivation.  We filled a big basket with treasures from Target's $1 aisle and informed her that she could earn a prize if she stayed in her bed all night last night.  She needed a little comforting once around 1am, but managed to stay in her own bed!  Hip Chick was so thrilled with her accomplishment that she requested touse her prize as soon as possible this morning.  Let's hope we can repeat the accomplishment tonight!

4.  What additional challenges are we navigating with Hip Chick at this time?

From the time they begin walking until about three or so years of age, human beings are very busy creatures.  When you take one and bottle up their ability to move for the better part of a year, the "freedom rush" pops and explodes with the force of a champagne bottle once their full mobility is offered again.  Hip Chick is making up for lost time with all the unruliness,  character, and spunk of the heroine Merida from Disney's movie Brave.  

5.  Prior posts Indicated an abscess and her body's elimination of an entire suture line- how has this progressed?

She seems to be healing nicely.  Her surgeon's office called a couple of times on Monday to discuss.  If a "hole" remained where the thread had pushed out of her body or if the incision area showed signs of infection, she.would have needed medical attention.  Fortunately, this was not the case.

6..  What and when is the next milestone?

It is this week.  She will have an xray to determine whether her femur is still properly in socket.  We also need to discuss the timing for a surgery to remove the plate which has been holding her femur together.  If her xray shows promising results, we can schedule the hardware removal and hope for about six months without medical appointments.  If her xray shows that her femoral head is beginning to pull away from the socket?  

Let's just say that this week's visit is of great significance for us.  Last July, her hip fully redislocated within two weeks after her spica was cast  removed.  This week's appointment will be her first imaging since December's cast removal.  To us, it feels as this appointment is the pivotal moment to move forward with a little relief or added planning.  Either way, we are ready.

New Year Resolutions

It is a hopeful time at the Hip Chick household as we prepare for a new year.  We have never been happier to say goodbye to a year as we are now- and few would fault us for the sentiment.  Yet, we cannot write off 2013 as entirely bad.  One learns much more about themself while navigating challenges and heartache than when life sails on cruise control.

New Year resolutions are a common tradition- but not often with much seriousness.  Society jokes about how quickly some may be broken.  As we enter 2014, however, Mommy has a list of resolutions we hope not to break.

1.  I resolve to accept that my child's journey is a marathon, not a sprint.

When our daughter was first diagnosed last January, a trusted medical professional advised us, "You will have six months of hell and then everything will be fine."  At Hip Chick's day surgery appointment three weeks ago, however, her surgeon advised, "you have 15 to 18 years ahead of you to treat this."  What a wide swing in expectation for us parents.  We clung to that initial piece of advice and managed Hip Chick's medical plan like a 50 yard dash early this year.  Now, we realize we are tasked with a much greater journey. While we hope and pray our daughter will not need additional surgeries, there are no guarantees.  And so we must embrace any future relays with a different approach.

2.  I resolve to empower and empathize with my child- not pity her.

We are fortunate in that Hip Chick is a highly motivated little girl and does not naturally sit around feeling sorry for herself.  Yet, we need to remain vigilant in that we do not allow her to fall into that trap.  We need to raise her with "can do" instead of "cannot."

3.  I resolve not to define my household by my child's disability.

Our household has been characterized largely by Hip Chick's diagnosis and medical plan this year- and rightfully so.  But 2014 is time for us to define our household by other things- vacation, volunteer work, creative endeavors... hip dysplasia will always be there.

4.  I resolve to be an advocate for my child's disability.

As mentioned in early posts, most of our friends, family, and colleagues had not previously known of a child with hip dysplasia.  Many remarked to us that they thought the condition was only for dogs.  Mommy's OBGYN had not previously delivered a baby with DDH- and we live in a major metropolitan area!  As our child may be the only encounter some people have with hip dysplasia, we have an opportunity to represent it appropriately as it arises in conversation.

5.  I resolve to build the household and marriage my husband and I dream of alongside my child's disability- not let it crumble because of it.

This last one was hard for us in 2013- especially for Mommy.  It is natural to forego the gym membership, social events, or fun opportunities because "my child needs me."  But a year has passed and without any guarantees for the future, we need to build what is possible for our household- to accommodate Hip Chick's needs but not fold because of them.  This will take energy and effort, of course, but we owe it to ourselves to do so.

Five resolutions for our new year.  All achievable.  We cannot control or predict what Hip Chick's medical needs will be in the year ahead, but we have the opportunity to begin anew.  That is the best resolution of all.

Body Odd

In my last post, I remarked on a minor abscess to the side of Hip Chick's pelvic incision and suture thread hanging out of it.  Well, mystery solved!  This fell out of her hip through the abscess last night.  Her body worked to push out this entire line of thread.  I had dabbled it with Neosporin Friday night and yesterday- her body handled the rest!

I don't fully understand why her body would choose to push out a suture line, but it clearly wanted it gone.  Of all the experiences through this hip dysplasia journey, this was quite an unexpected sight.  Our bodies are remarkable organisms, aren't they?

Post Casting: Week 3 Recap

Hip Chick is wrapping up her third week of regained mobility... how has time passed so quickly?  Christmas week has ended, but not without extra cuddles from Mommy and Daddy.  We enjoyed additional days away from work and passed them with home cooking and movies.

Hip Chick enjoyed her first treat of fizzy juice.

Mommy spoiled Daddy with our annual Christmas dinner of oversized Peking duck wontons.

Many families exchange presents this time of year, but we already received our gift: our baby was walking!  We had not expected to see her walk again this year.  Perhaps miracles still occur after all.

Below are this week's thoughts:

1.  Hip Chick seems to be doing well- has she moved past the possibility for complications?

Not necessarily.  Just this week, we noticed something peculiar with her suture thread (stitching).  Her incision looks good and the thread pokes out of her skin, on either side of the incision.  On one side, the thread has grown longer and longer such that nearly two inches of thread are hanging.  It also has grown more irritated, such that it finally developed a pimple and white head around the thread.  We noticed the white head at bathtime last night and called Scottish Rite.  A charge nurse and on call physician discussed the symptoms and advised that Hip Chick likely has a suture abscess.  (If you search on the internet, you may also see the term "spitting suture.")

What does this mean?  This means that we are monitoring her for infection.  She has a follow up visit schedule in early January, but will need medical attention sooner if she develops a fever, if the abscess develops significant drainage, and/or if the abscess becomes hot to the touch. Along with this, we need to need to monitor her incision to ensure it does not develop similar issues.  The nurse specifically asked us last night whether the incision still looked healthy in spite of the suture.

Obviously, there Is something about the end stitch and/or the dissolvable thread which her body dislikes.  We were approved to dab the abscess with Neosporin.  In an earlier recap, we discussed that she clawed off her bandaging two days after the pin removal.  Mommy wonders: was she feeling some form of reaction to the stitching then?

2.  What mobility gains did Hip Chick achieve In week three?

Our little hippie is a busy girl!  She is climbing with greater ease, although she leads mostly with her right leg.  She can lift her right foot over her head, but the range of motion on her left side is still limited.  Her gait is quicker.  The big news came on Friday:  Her daycare teacher was thrilled to relay that she crawled through a long tunnel and she sat on a tricycle!  She wanted to push the tricycle's pedals, but could not manage just quite yet (she could not ride a tricycle prior to surgery).  We are all so excited for her!  At three weeks, her mobility is nearly where she was prior to the second surgery- and she is trying new things!  

3.  Prior posts indicated a continuation of sleep issues- have they resolved?

Unfortunately not.  They do not occur every night and seem to occur despite differing activities/environments during her day- so we have yet to isolate a "trigger."  As mentioned in a prior post, Mommy had previously polled the support group on the matter and lingering sleep disturbances are a common issue.  For the Hip Chick household, we are challenged in that we cannot easily differentiate between a night terror and true call of distress.  Even if Hip Chick is "sleeping" through the shreiks and screams, the rest of the household is not.  If this does not improve by her next appointment, we will ask her surgeon whether it is time to involve Child Life (social work/psychology).

4.  Should other "hip" parents use Hip Chick's milestones as a barometer for their own children?

In short- no.  Each child will move at his or her own pace.  While our daughter wanted to walk mere hours after cast removal, some children may not attempt to move for weeks.  Each end of the spectrum (and all the points between) are all "normal."  While we are ecstatic with our daughter's achievements, our challenge is that she regularly out paces our expectations.  We often feel unprepared when her next "watch this" moment arrives.  As this has been a bit of a theme for the year, we suspect she will be surprising us in similar fashion for quite some time.

5.  Have we altered her diet or considered supplementation to aid the healing process?

I know of some parents who thought adding a vitamin D supplement was a smart choice.  For Hip Chick, we offer a well rounded diet (her school is of huge assistance, with a full-time, on site chef/nutritionist) and give her a daily chewable multivitamin.  She seems to crave a lot of dairy products, so we give her fortified 2% organic milk as well as yogurt and cheeses.  Her daycare has her class play outside daily, weather permitting (the body uses sunshine to build vitamin D).  Otherwise- no.

6.  Weather has grown colder- are we still dressing her In thigh high socks and dresses?

Her legs' and hip's sensitivity has lessened, so we have just begun dressing her in loose fleece pants.  They are still very soft, but provide added warmth.  She will wear the thigh highs again as weather warms.

7.  What will the next week bring for Hip Chick?

A new year.  Hopefully one with much more freedom and much less pain.

Post Casting: Week 2 Recap

Hip Chick has completed her second week post casting and, well- it wouldn't be our little hippie without a few surprises up her sleeve.  She always seems to out pace our expectations and this week was no exception.  More about that later- Big Sis was here this weekend!  

Big Sis had not yet seen Hip Chick since her cast was removed.  With Hip Chick's unanticipated mobility gains, we had opportunity for a little seasonal merriment.  It had been three months since we four enjoyed a wheelchair-free outing and there is a bit of catching up to do!

First up was a trip to the movies.  A fancy new theater recently opened nearby and we took advantage of a matinee.  Who could not enjoy a movie after strolling the hall above?  

We treated Big Sis and Hip Chick to Disney's new animated film, Frozen.  The sisters' wintery fairytale was a hit for our young pair (and it did not hurt that the venue served lunch).  Afterward, our girls walked to the exit hand-in-hand for the first time since September.  I love seeing them walk together so much, I can hardly contain myself!

As it was only Hip Chick's second "big movie," we considered it a success.  I had to remove her for ten minutes near the end, but we managed to view the finale.  Unfortunately, we cannot relay that all of our weekend was as cheery as the experience above.  Hip Chick had a very rough night on Friday night and was volatile through Sunday.  We simply aren't past that part of this year's phases yet.

Today we had a different type of fun in mind.  An area resort featured an array of family-friendly activities and one in particular seemed to be a perfect opportunity for the girls.  First, we strolled the grounds to fill their sights with seasonal cheer.  

One specific fountain gained special attention from the sisters.  We let them stand near the nutcracker's base and gasp at how high the water shot above.

We wound our way through the atrium gardens to the day's event: gingerbread decorating!  Each sister selected a pet, parent, and sibling to dress in icing and colorful candies.  Daddy and Mommy assisted with the icing (although Big Sis managed much of hers).  The girls may have snuck a piping of icing or two as a snack.  Voila!  Beautiful. 

The girls followed their cookie decorating with a unique photo opportunity.  Instead of waiting in line for Santa, as many children do this time of year, our girls waited in line for photos with "Gingy," the life-sized gingerbread man from the movie Shrek!  Both girls were equally excited and staff even coaxed Daddy and Mommy in front of the camera for a family shot.  Fellow parents must agree:  an oversized cookie is infinitely less creepy than a strange man asking for children to sit in his lap and discuss secrets.

Hip Chick was especially taken by him. 

We ended the outing with an additional "meet and greet" experience.  The girls met "Toothless" from How to Train Your Dragon (Hip Chick requested to ride him), "Po" from Kung Fu Panda, and "Shrek."  While our outings were fun, Big Sis showed her maturity in regard to her ability to navigate Hip Chick's volatility otherwise.  We hope to see incremental improvement each day.

Below are additional thoughts:

1. Hip Chick's volatile disposition is heavily referenced in this blog- what is the reason behind it?

We cannot be certain of the source(s) for her angst, but we have a few suspicions.  First, she wants to accomplish more than she physically can at this time, which causes frustration.  Second, the personality qualities which carried her through the casting phases now need to be honed.  Meaning:  characteristics such as willfulness and verbosity need to be softened now that she is on the move!  Lastly, she still has pain, stiffness, and other lingering issues which will carry her until her physical movements are smoother.

2. After the summer's cast removal, she experienced night terrors.  Has she developed any new sleep disturbances after this second cast removal process?

She cries and moans intermittently overnight, but does not always seem to be conscious while doing so.  This replicated itself during an afternoon nap today.  This could be a manifestation of night terrors- but we cannot say for certain.  I had polled my support group about such things earlier this fall and received numerous responses about lingering nightmares.  A representative of the International Hip Dysplasia Institute recently asked support group members to submit essays regarding psychological issues related to their child's plan of care, but there is not much data on this topic at present.  

3. This blog entry opens with a reference to Hip Chick's antics.  What surprises did she provide in her second week of mobility?

Our biggest surprise occurred in the wee hours of our morning.  Around 2am, Daddy and I awoke to discover her walking into our room.  This means that she climbed out of bed, walked through her room in the dark, opened her door, and walked to our room!  I pulled her into bed with us, but subsequently awoke around 5am to discover her climbing back out of our bed.  She informed me that she needed to "walk around" our home.  Needless to say, Mommy had an early morning... and we now need to safety-proof our doorknobs.  

She also seemed to surprise her daycare teachers this week.  Upon her first day back, they could not believe she was walking!  That first morning, the class went outside to play and Hip Chick immediately requested to climb on the jungle gym.  Her teachers advised that her legs needed to grow stronger first... so what did our little hippie do?  She had them help her walk circles around the playground while her classmates climbed and slid.  She repeated her circles each day for the remainder of her week.  I can just hear her little voice retort:  "Challenge accepted!"

4.  What mobility gains has she made within the past week?

She can walk independently for greater periods of time and I noticed today that her knees are starting to bend ever-so-slightly as she walks.  She can climb off of and onto certain furniture pieces, although it is easier to climb down.  I can now pull very loose pajama pants on and off of her legs and hips without much of a painful whimper. 

5.  Her legs were quite sensitive, scaly, and dry after cast removal- how are they now?

They have improved quite a bit!  I attribute this to the Aveeno product line she is using at bathtime and clothing changes.  They are softer and most of the dead skin is gone.  As mentioned after her summer cast off, she did grow hair on her legs.  Her surgeon advised that this is common for children casted for these extended periods of time.  My fellow support group moms have advised that it can take up to a year for all of the hair to fall off.

6.  How is she dressed for now?

For the first few weeks, I wanted as little pull near the hip area as possible.  I opted for thigh high socks with warm dresses and Charlie Banana reusable diapers over her disposable ones.  I loved her first two pairs of Rock-a-Thigh socks so much that I purchased them in additional colors and patterns.  I wanted her to be proud of her legs and thought the fun patterns would help.

7.  While she has realized mobility gains, are there any lingering physical concerns?

We have noticed that there seems to be a considerable difference in her hips' latitutde and her knees don't appear to align as she walks.  But we were informed that her first month would realize a lot of stiffness and that she would walk with a limp for six months.  She returns for imaging in early January, so we will reconfirm her hip's positioning at that time.

That aside, I have noticed that she howls and tears if her femoral scar is accidentally poked.  Her surgeon had advised that many children realize an arthritic response to weather changes at their surgical sites, but we cannot assume these are related.

8.  Has she displayed any other developmental issues outside of DDH?

Her daycare just relayed that she will be promoting into the next class up in January.  I took this as an opportunity to inquire about additional issues the school may have noticed.  Her teacher remarked that she is very bright and has no such issues (outside of her mobility) at this time.  This next class will be the transition between daycare and preschool, so we will have greater opportunity to discover any such concerns over the next six months.  Otherwise... next stop, preschool!