"I Go For It"

Hip Chick stunned and amazed us tonight.  Big Sis and I were seated on our love seat and Hip Chick was resting in my lap.  Without warning, she rolled off my lap and onto her stomach.  She pushed herself off of the couch and onto her feet.  This short series of movements was enough to dazzle us, but she had greater aspirations.  She looked me in the eye and announced quite matter-of-factly, "Mommy, I go for it!" Suddenly... she began cruising along the furniture!!  I squealed in excitement and Big Sister's mouth fell agape!  She made her way from me to Big Sis and back... then began exploring a path to her spica desk and the coffee table.

Our hippie then grew adamant that I help her walk. I opted for a slightly different approach than before.  I stood in front of her, holding her forearms.  This helped her to lean forward.  Next thing I knew, she was swinging her hips to "walk!"

She still has a long progression before she can walk independently, but today was a giant leap from her skill set of yesterday.  Who can predict what she will do next or when?

Independent Play, Charlie Banana, and Sleeping Position

Today we began working on independent play.  For a few minutes at a time, Hip Chick would stand at our coffee table and play with her Little People sets.  Her legs would tremble and wobble once they became taxed.  Aside from snapping this photo, I remained close behind her, so she could fall back when her strength gave out.  

So far, she can sit up by herself and stand for brief periods of time.  She begs to walk.  It is very painful for Mommy and Daddy's bad backs, but enable her to the best of our ability.  To "walk," I will place my hands on her waist while she leans on my arms.  Then, I help her swing her legs back and forth.  It makes her so happy!

Hip Chick's new cast has presented a fresh fashion dilemma: how to protect her diaper area and hips without the ability to use leggings, pants, or shorts?  Enter the Charlie Banana line of reusable diapers.  I found some on sale for half price at my local Target today.  I removed the absorbant padding, layered one over her regular diaper, and... voila!  Petrie cast bloomers.  They are ideal because they snap together on the sides (no feeble "no sew" attempts by Mommy to convert other clothing) and are available in a number of solid colors.  I had already snapped a white pair onto her prior to the photo above.

Lastly, we had to make sleeping adjustments for our daughter to accommodate the new cast.  Her surgeon drew attention to the tightness of her quadriceps with the new cast position.  To prevent undue stress on these muscles, he recommended she initially sleep on her back, with her cast supported by a pillow.  After a few days of this, our daughter finally begged to sleep on her stomach- she loves to sleep in that position.  As tonight was her fourth night in the petrie cast, I relented... and she quickly requested I switch her to her back.  It seems that her quads are still a bit too inflexible from her time in the spica.  I have high hopes it will resolve soon, though... I have come to learn that each progression is just a phase and can be overcome.

Petrie Cast- Our Introduction

Well, look who's standing!  After a trying 30 hours, Hip Chick decided the pain was worth it and stood on her own, with a little help from Mommy and our coffee table .  We were a little concerned up to this point, as she had complained a bit more with this procedure than for the first cast change and perhaps even more than her surgery.  She would request an attempt at mobility (standing, crawling, walking) and then howl and shudder in pain once her request was granted.  After a few hours, she would ask again and the cycle continue.  Just before dinnertime tonight, she finally achieved her goal.  

She began inspecting her new cast last night.  She repeatedly ran her hands back and forth across the bar, as though she was examining it for either weakness or leverage.  We knew that her ability to push through the pain would be the tipping point toward determining exactly what her cast can do.

During this timeframe, a few things popped into our own attention.  First, after being enclosed in a spica for so long, we are convinced she held the cure for cancer in her belly button.  That... was... filthy.  Second, the exposed portions of her upper thighs are extremely tender and covered with peeling, yellow, scaly skin.  Mommy is tackling that as soon as she can bear for me to touch it.  Third, she has long, thin sores along her left hip, where it looks like the top layer of skin rubbed raw from inside the spica.  Baby girl complains of this frequently and we are treating with Neosporin, per her surgeon's advisemet.  

I have also learned that she has quite the impressive choke hold.  It is painful to her for us to pick her up and the bar connecting her shins is a stretch for me.  (We had been advised the bar could help us stabilize her legs and hips to carry her.)  This usually means she grabs onto my neck as tightly as possible, digging her shoulder into my throat as she yowls.  I can now rest peacefully with the knowledge that she could effectively defend herself from an intruder when she grows old enough to move into an apartment of her own.

We overlap doses of Lortab and Motrin to control the pain, much like her surgery in March.  If this is any indication of what it may be like for her cast to be fully removed, we have a bit of preparation ahead of us.  But if those preparations help her walk again... they will be worth every moment.

2nd Cast Change: Goodbye, Spica... Hello Petrie Cast!

Today was our daughter's second cast change and third OR appointment overall.  Preparations were a breeze for this appointment.  I hesitate to use the term "routine," but with three of these under our belt, we have certainly built a sense of familiarity by now.  Admittedly, I feel both comforted by and resentment toward that familiarity.  

My husband and I often have restless sleep the night before her procedures.  Anytime general anesthesia is administered, there are risks and a parent cannot always turn off those nagging worries of "what ifs."  As we walked into day surgery today, I could not help but think of my fellow support group members. One member is a 15 year old who has had nine surgeries to correct her hip dysplasia, to include a record for the largest and heaviest spica cast.  Another is a mother whose child just received a bone graft from a cadaver to help reshape her hip socket.  Yet another is a mother who recently banked four pints of blood for her daughter's surgery, as some of the more advanced pelvic procedures carry a 25 percent chance of hemmorhage.  Our worries pale in comparison and perhaps mine are a bit shallow... but today it was our daughter in the OR.

Hip Chick did her best to turn her pre-op area into a jungle gym.  We received a sock monkey which looks to be one of Emily's Monkeys, pictured above.  Emily's Monkeys is how the family of a young girl diagnosed with juvenile dermatomyositis (a rare auto-immune disease affecting three out of one million children) is giving back for their experience with Scottish Rite.  The family makes sock monkeys in bulk and donates them for Scottish Rite to give children just before their OR appointments. We danced with her sock monkey in pre-op until the "goofy juice" took effect and they wheeled her out.

While we usually busy ourselves with breakfast during her procedures, we had a brief detour today.  We agreed to participate in a genetic study and each supplied two vials of blood for research (including two vials drawn from our little hippie in the OR).  Currently, there is no firm medical data to tell us exactly what causes hip dysplasia, but there is a theory that it has a genetic component.  The study we agreed to participate in will help researchers in their quest to (dis)prove the theory.

After a trip to the lab and the cafeteria, we returned to day surgery to receive very good news!  Her femoral head appears to be in socket and her legs and hip are ready for a less conservative position.  So, goodbye, spica cast and hello, petrie cast!   Much to our surprise, instead of a low waist... there is no waist!

The petrie cast will help relieve her hips and legs from the atrophy which has set in during the past three months.  It will enable us to use normal diapers (no more late nights making diapers!!), dress her in shirts and dresses her actual size, and use a regular car seat.  And she will only be in this cast for approximately one month, as opposed to the six or seven weeks we were expecting in a third spica.  Mommy and Daddy are thrilled!  We have not seen those little thighs in four months or her little belly button in three.  I made sure to give her legs a kiss before we discharged home!

Most importantly, the cast can help her to relearn how to walk.  Her surgeon advised that some children are walking by the time the petrie cast is removed.  If the past three months are any indication, we expect that she will, too.  

So... what now?  First, she was discharged with a narcotic pain reliever to help with any nerve, muscle, or joint pain from repositioning her legs and hips.  So, she needs to move past the discomfort.  She will wear this cast for approximately one month and then we will see what her hip can do.  Is she guaranteed to avoid future surgeries?  No.  Does she have a shot at a best case scenario?  You bet.  

At this point, the determining factor will be whether her hip socket remains too shallow to withstand normal mobility.  If that is the case, we will progress to an open reduction- possibly as early as this fall.  But for today, we celebrate the sight before us.  Looks like a little of this weekend's fairy magic found its way to our baby girl after all.

International Fairy Day and Super Moon

We are in the midst of a special few days.  Tomorrow night is this year's "supermoon" and Monday is both International Fairy Day and Hip Chick's third OR date.  I tend to be a bit superstitious in they days immediately preceeding our daughter's procedures.  I feel that it is important to make good memories shortly before these dates and today seemed to be prime opportunity.

A couple of weeks ago, I made my newest wreath (pictured above).  I had envisioned it months ago and anticipated it would serve as my spring wreath, but the business of traction and the first two casts made time fly by.  With its earthy theme, I thought it would easily coordinate with this weekend's festivities.

It was a day of indulgences, starting with a fancy-schmancy breakfast.  I smeared strawberry cream cheese between two slices of cinnamon raisin french toast and topped with caramelized bananas.  

Breakfast was served with sparkly hats and fairy wands.  Hip Chick thought that the song Twinkle Twinkle Little Star was an appropriate ode to our day and breakfast was kicked off with the tune.

Breakfast was followed by a little shopping- clothes for Big Sis and shoes for Hip Chick.  Our local mall has a "soft play" center and we indulged our baby girl.  She was thrilled to crawl and play so freely in public!  

We continued our fairy theme at dinner with butterfly shaped pizza crusts, courtesy of my handiwork.  

They "painted" their winged templates with sauce and sprinkled with cheese.  

After dinner, we had one last trick up our sleeves.  No magical day is complete without a spark and we supplied that in the form of freshly made s' mores.  Both girls were ecstatic, and our little hippie went so far as to turn hers into an open-faced sandwich of sorts, unashamedly throwing her face into her plate as though it was a pie eating contest.

We concluded our day with a tribute to the moon.  The girls were allowed a late bedtime just to bid the moon goodnight.  We quoted a few lines from a beloved children's book as we walked inside.  A special day, indeed.  Pending positive results on Monday, we hope for many more to come 

Spica Cast- 13 Week/2nd Cast Recap

It is here!  Our daughter is in her last five days of her second spica cast.  This is her 13th week of casting to date and 17th week of immobility.  Her next procedure is on Monday morning.  

Monday's agenda is similar to her first cast change, with a slight caveat.  As before, she will be placed under general anesthesia.  Her cast will be removed and an arthrogram completed. If the imaging is favorable, they will recast her and send her home for a final six to seven weeks of casting.  If her imaging is unfavorable, she will remain uncasted and an open reduction (open hip surgery) will be scheduled.  

The difference is that there are two possibilities for her casting position.  If her surgeon opts for the most conservative position, she will be casted the same as her first two casts.  If her surgeon determines that her hip is ready for a less conservative approach, she may not be in a spica, per se.  The height of the alternate cast would drop to a more natural waistline and her legs would be casted nearer together, in a more natural "sitting" position, with a firm bar connecting them.

Below are additional thoughts:

1. Several posts seemed to center on cast condition- how has it held up?

The duct tape at her ankles and torso opening made all the difference in protecting her skin and cast alike.  The inner, front torso lining ripped again just under the duct tape line.  This time, I left it alone.  By the time it ripped again, she had only one week left in the cast.

2.  There was one diaper leak in the first cast and none at the mid-cast update for this second cast... what's the score now?

Unfortunately, there have been two more leaks. We have determined the problem:  Daddy's fingers are too big to tuck the diaper flat enough to dam the urine overnight.  When she lays on her stomach, the cast positions her hips up, at an angle.  If the diaper is not flattened against her skin at the bikini line, the urine streams down her torso and leaks out at the chest opening.  

The leaks have occurred on the nights my husband offered to take the graveyard shift diaper change so I could get a full night's sleep.  Usually, I handle the diaper changes both immediately before our daughter's bedtime and in the middle of the night.  Now that we know the issue, it's an easy fix.  I may have nearly two more straight months of late night diaper changes and interrupted sleep... but Daddy can round it out with the early morning shift.  

3. Does Hip Chick have difficulty with spacial awareness or has she attempted to push her limits too far?

Her teachers once relayed a story of her interest in a specific, toddler-sized car.  The first time she requested to play in the car (in her cast), her teacher relayed skepticism, telling our hippie that she could not fit.  Hip Chick protested, so her teacher relented... sure enough, it was an exact fit.  Despite her young age, she seems to have a good perception of her capabilities- perhaps better than we adults do at times.  But she still needs oversight, as she will occasionally take big risks.

4. Prior posts have read as though we are ready for the third cast- any particular reason as to why?

Time seemed to pass quickly with the first cast, due to our steep learning curve and the adjustments we had to make in our daily routines.  Our daughter was still home bound for nearly the first half of the first cast, so her return to daycare helped break up the casting period.  This second casting period felt stagnant.  There were no big milestones, medically speaking, so this seven weeks was more about the reality of everyday life with a (temporarily) crippled child. Should her arthrogram yield favorable results, this third cast will propel us to prepare for life without a cast and answers to very big questions for our little one. 

5. Looking back, is there anything we would have changed to date?

My husband and I have still been on only one date night in four months.  We had shied away from the idea of using anyone outside the family to babysit due to Hip Chick's special needs.  But our usual babysitters are either physically unable to do so or feel uncomfortable doing so for the time being.  Some very good friends and neighbors of ours have offered and so it is time we stop fretting about burdening non-relatives.  In the meantime, I pulled out all the stops for a DIY upscale dinner a couple of weeks ago just for us two parents... complete with our china!

6. Earlier posts referred to an online support group.  Is this still a resource I am drawing from?

Absolutely.  At first, I felt a bit deflated by the reality of what the other mothers in this support group were facing with their children.  I experienced another, brief grief cycle when I saw the grittier details of what awaits if Hip Chick's current, six month plan fails.  But there are some truly remarkable women in this group and it is a great resource to find mentors to aid you through your child's treatment plan.  While I admire many of them, I hope and pray I never need to draw from their personal experiences.

7. In summary, what has been accomplished in this second cast?

By Friday, the accomplishments will include: 33 days of daycare, a first haircut, one (short) out of state road trip, an overnight stay at Bubbie's house, an aquarium visit, an attempted dance recital, an attempted first movie, approximately one dozen restaurant excursions, a grocery shopping trip with just Mommy, one birthday party in a park, and two family gatherings for Father's Day.  Excursions feel a little less challenging than when we first began taking her out and we believe it is important we continue to offer her socialization.

8. How is her overall disposition?

In general, she continues to be a happy child.  But if she feels the need to assert herself... watch out!  Those advanced verbal skills have pushed into negotiating and lecturing.  

9. How has Big Sister continued to manage her experience with the situation?

She has done exceptionally well.  Since Hip Chick has such developed verbal skills, it helps their ability to interact.  Big Sis is also embarking on some additional "big girl" milestones of her own these days, which seems to help- as well as daddy-daughter dates.  I think it is also helpful to her that she has another home to find solace in, where she doesn't have to experience her little sister's disability (and the lows that can accompany it) on a daily basis.

Dance Recital and Father's Day Weekend

This weekend was a busy one.  Not only was it Father's Day weekend, it was also Big Sister's annual dance recital.  Due to the location of all festivities, we opted to spend the night at my mother-in-law's home, which meant our first (only?) overnight stay away from home with the spica cast.

First, we attended our Pink Princess's dance recital.  As this was a 3.5 hr event, we had some compromises to make.  Big Sister's mom was kind enough to save us seats near the rear of the auditorium- a very smart move.  I thought we were well armed with snacks and live entertainment.  Unfortunately, Big Sister's two numbers were dispersed between many more and Hip Chick was restless.  While we awaited the star of the show, I took Hip Chick into the common area of the high school hosting the big event.  

Hip chick begged to "crawl" through the empty hallways.  She insisted I lay her down onto the cold tile, and then she dragged herself past empty classrooms, asking to be picked up and peek into their windows.  Together, we discussed what may have occurred in them.  She was thrilled to pull herself as I strolled alongside, the irony of her clawing the floor outside a dance recital lost upon her.

Parents, relatives, and dancers passed us by in the common area.  Some pretended not to look, diverting their peripheral gazes as my eyes met their faces.  Others smiled weakly and sidestepped.  I was tempted to pull her up but resisted- I wanted her to feel I was as proud of her as any dancer's parent inside the auditorium.  She was as happy as a lark with her accomplishment in progress.  I was relieved by the few with enough courage to ask why she is casted.  I prefer intelligent questions over sideways glances any day.

When it was Big Sister's turn to perform, she held no shortage of support or excitement for her big sister.  She was happy to clap and cheer for her sister, but she did not seem to care much about the other numbers.  I wondered whether she would be bothered by so many dancing children in front of her, but the juxtaposition seemed to have more impact on Mommy than our little hippie.

Of course, with an event this long, a diaper change was badly needed- especially since our plans for after the recital would be unlikely to offer a convenient location to change her.  Unfortunately, nerves must have unsettled a young dancer too much and the bathroom was a big mess.  We climbed a stairwell and changed baby girl's diaper in an empty hallway.

Afterward, we met extended family for dinner, which went well.  It was her first family gathering with my in-laws since the onset of traction (much less surgery and casting) and she weathered all of the activity with good spirits.

We spent the night at my mother-in-law's, which meant her first time sleeping away from either home or hospital since last year.  Aside from our trusty portable booster, our biggest aid was our rocking bee.  I used it to clean her, dress her, fix her hair without missing a beat.  She did not sleep quite as well as usual in her unfamiliar surroundings, but Mommy was able to keep her (mostly) contained in our shared bed.  I was nervous that she would fall off the bed as I slept, without her crib slats to guard her, but she was happy to snuggle next to me as best she could in her cast.

We enjoyed brunch with my husband's immediate family in the morning.  Despite being away from home for so long, she continued to weather the string of events well.  Better than expected, actually.  24 hours away from home without too much hiccup.  We may not incur any more of these occasions before her third cast is removed, but I feel that we accomplished plenty this weekend to be proud of.

Crib Slat Foot Injury

In the wee hours of our morning, we awoke to that sound.  It was the sound that every parent dreads- the blood curling, hysterical scream of a terrified or badly injured child.  I rushed into Hip Chick's room to discover her foot tightly wedged between her crib slats, with the spica intensifying its wedge.  It took a little time to free her, especially since I neglected to grab my glasses before flying into her room.

She must have worked to free herself extensively before the hysteria set in.  This morning, a couple of bruises and a blister manifested themselves.  I attempted to photograph the blister (above), but my exposure setting washed it out a bit.  She did not sleep soundly for the remaining of our night, leaving a very exhausted household.

Poor baby.  I can only hope that the position of her next cast is a better fit into her crib.  

Treasure Chest

For those who have read an extensive portion of this blog and/or know us personally, it is obvious that Hip Chick has a pacifier addiction. After seeing so many pacifier photos over the past four months, some people have offered unsolicited opinion constructive advice regarding whether she "should" still use a paci and what we need to do to break the habit.  

As we rang in the new year, one of my resolutions was a "paci free in 2013" campaign, as I wanted to wave her beloved crutch goodbye by her birthday last month.  Enter the hip dysplasia diagnosis.  What kind of parent would crush a child's primary coping mechanism just before the child is crippled for six months?  A rather unempathetic one, in my opinion.

With that said, now seems to be an opportune time.  With one month of traction and two OR appointments behind us, we can only hope the more difficult obstacles are behind her.  BUT... if they are not, then they will not stop coming for a long time.  At this point, the cast is accepted into her daily routine.

I visited a local craft supply store and purchased supplies to make a treasure chest.  Little one loves mermaids and fairies, so a treasure chest seemed to be a good way to meet her halfway.

I painted it to look like a befitting focal point in a Disney movie.  I painted her "treasure" (miniature wood carvings of hearts and stars) with two coats of sparkly paint so it would glisten and shimmer in the sun.

We have told her it is where her paci sleeps when she must leave it behind.  We have difficulty in the mornings, but evening and weekends have begun the transition.

Speaking of treasures, it was previously a custom for young women to maintain a "hope chest" of sorts, to stow away their marital trousseau.  I have begun collecting dreams and wishes for when our little hippie can walk again.  The outfit above was the first I purchased and represents my hope.  I imagine what it will look like to see her legs again or to tickle her knees. My husband awoke one morning with tears in his eyes after dreaming that she was walking toward him.  We hope and dream that her hip will stay together after her next eight weeks of casting concludes.

Lastly, the photo above is of Hip Chick's growth chart.  I had purchased it as a holiday gift for her and planned to begin marking her height at regular intervals this year.  I marked it two weeks before she began traction and again today.  As you can see, the spica has caused her to stand six inches shorter than before.  As we envision what she and her life may be like after these casts, this growth chart represents just one of so many questions and hopes we have for her.  So, perhaps it is fitting that little one has her own treasure chest now.  We each carry our own stash of hopes at the moment.

Funky Town

What... is... that... SMELL?

The first waft of a malodorous cast is unforgettable.  I liken it to over ripened fruit which has been sitting in the sun just long enough to reach that point.  The best word I can use to describe it is "funk"- and not in a "play that funky music" kind of way.  Hip Chick's battered cast finally tripped that line this week. How did this happen?

Whereas our little hippie barely managed to move independently for the first half of her first cast, she has been a very busy girl from her first afternoon in this second cast.  She also was not in daycare for her first 2.5 weeks in her first cast, but returned after two days in the second one.  A busy girl in a spica cast is a sweaty girl, as she has to pull herself across the ground to move independently.

What I suspect to be part of the problem is her cast lining.  Over a month of dragging herself wherever her heart desires and the interior chest lining finally tore, just beneath the duct tape barrier I had created.  As mentioned in my post that week, the lining at her chest and ankles began to rip just the second day in this second cast and butterfly patterned duct tape was my resourceful mom solution of the moment.  The odor seemed to stem from this ripped opening.  I stuck my hand into her cast at several different opportunities to ensure she had not smuggled a sweaty cheese home from daycare- nothing would surprise me at this point.

I was both relieved and slightly disappointed that the problem wasn't spurned from an episode of string cheese kleptomania and opted for a two-pronged solution.  First, I pulled out Hip Chick's remaining butterfly duct tape and retaped that ripped liner as tight as a drum.  If the cast interior itself had aborbed sweat, spilled milk, or any host of smelly toddler interests, I wanted the stench contained and metaphorically smothered to death.  Next, I followed my hubby's suggestion in revisiting my lavender baby soap methodology from our singular diaper leak.

It's too early to gauge how effective my remedy is, but I will say a silent prayer as she leaves for daycare in the morning.  That initial whiff triggered my first "I can't wait for this cast to go" reaction.  We have just under three weeks until the next cast change and all eyes are focused on reaching that milestone.