Warning: Objects Are Closer Than They Appear

I has been an emotional week.  It has been an emotional six months, to be more precise, but this month has seen a culmination of sorts, which flushed out this week.

It began with the news earlier this month that Hip Chick would need "the big surgery."  We have been flooded with sympathy and well wishes from loved ones.  At the same time, I personally have been on the receiving end of what were likely to have been well-intentioned "pep talks"... but ended up as confessionals for people to tell me about children in their lives who had something go terribly wrong or who died on the operating table.  Not the best stories for Mommy's mental disposition.  Admittedly, I have incurred random chest flutters and dizzy spells in the hours and days after these unexpected conversations.

My (most amazing) support group recently encouraged parents to proudly display photos of their child's osteotomy scars.  It was a beautiful display of sisterhood and solidarity to see the photos.  But they hit me... hard.  

Despite all our little hippie has experienced these past five months, there isn't much of a visible scar, if any, from her surgery last March.  But these osteotomy scars... well, they are pronounced and unmistakable.  Perhaps I was not quite ready to see them.  It made Hip Chick's upcoming surgery seem that much more real.  It's like peering into one of those mirrors which caution you that "objects may be closer than they appear."

What is there to say about these feelings?  I want to relay to anyone out there reading this, who is spending each waking moment thinking about their child's DDH... wondering when they will walk, whether they will run, wondering if the next check up will result in yet another surgery... that it is okay to feel this way.  And we will not feel this way forever.

It seems common for DDH parents- especially the mothers- to feel that "if I don't keep it together, no one will."  We need to know that it's permissible to crumble a bit once in a while.  That we can feel weak for a few moments out of our child's eyesight and earshot.  And perhaps we will grow stronger because of it.

Girls Just Wanna Have Fun

We treated the girls to a much needed respite this weekend.  A very generous invitation was extended for us to join another family at a friend's lake house... how could we say no?  Before Hip Chick's diagnosis, we were hoping to treat our girls to a hearty road trip this summer, but that was tabled.  This was a fantastic cure to meet our family's need for a bit of carefree fun.

Our drive was two and a half hours, which was Hip Chick's longest trip since her diagnosis.  We stopped for dinner approximately halfway to our destination, which helped to maintain the girls' spirits.  The sun was setting as we neared the lake and Hip Chick was taken.  She exclaimed repeatedly about the "colors in the sky"- especially orange.  We arrived in time to unload and tuck the kids in.  Mommy tried to relax near an outdoor firepit and fell asleep in a camping chair.  Even (especially?) Mommy needed to let go a bit.

The girls began each morning by treating the local wildlife to a tasty bread snack.  With a dock just off the back porch, they were able to feed ducks, fish, and turtles in their pajamas.  This was exciting for everyone- especially Hip Chick!  We sometimes forget how something so little can bring such joy.

After yesterday's breakfast with the ducks, we treated the kids to an afternoon on the lake.  Hip Chick is a water baby and was thrilled with the promise of her first boat ride on "big water!"  After leaving the pier, the older kids made a big splash tubing while we drove to the local swimming hole- including our Pink Princess, with Daddy alongside.  Hip Chick felt rather dejected over our refusal to allow her to tube with the other kids- she would have thrown herself overboard if we let her.

We anchored in "Hell's Gate."  With such an unusual moniker, I had to research its origin.  I learned that the name is rumored to be derived from bad luck that some unscrupulous fur traders incurred at this break in the 110 feet of steep, rocky cliffs which flank the lake.  

This was Hip Chick's cue!  She pouted the length of our drive, as she was ancy to jump in from the moment we set foot onboard.  Dare I say, it may have been her happiest afternoon in five months- if not all year.  She cheered for her "jacket" with "seatbelts."  She floated... she splashed... she "jumped" (slid) as best she could off of floats into her Daddy's arms, despite her compromised leg.  She made games of leaning over and kissing Mommy from the floats.  She created silly "doop-a-doop" songs about sticking her fingers into the lake before splashing us.  Daddy held one sister in each arm while they splashed and giggled.  Mommy danced with Hip Chick in circles as we sang.  It was a gift of an afternoon.

Soon, it was time to return and Hip Chick slept through the big, family dinner shared by our three households.  Unfortunately, she awoke screaming... and reality caught us.  Water is a relief for Hip Chick, as it alleviates the pressure on her joints.  But, as I have mentioned in prior posts, increased spurts of mobility can bring a price.  Big Sis joined the other moms and kids for a drive-in movie in the area while I stayed behind.  Daddy would have taken the lead with our hippie, but how could Mommy leave her?  She settled after a dose of pain medicine and some leg rubbing.  We treated ourselves to a quiet night of cartoons and building blocks.

This morning, our Hip Chick's disposition was renewed and Pink Princess received her first fishing lesson.  We all looked on as she caught her first fish.  We cheered as her fishing rod bobbed and jerked with signs of a spirited catch... and look at this whopper pulled off of her hook!  What a great highlight to end our getaway.

While we enjoyed a fantastic time, Daddy and I left this experience with a bit of caution.  We had considered another small, weekend road trip before her upcoming surgery, but question whether she could handle it without another screaming episode.  We also feel that the timing may not be right for us to share sleeping quarters with other families again soon.  While our companions were gracious, we felt bad about exposing others to her screaming and erratic sleeping patterns.  We will think carefully about additional travel plans between now and her surgery.

In all, this weekend was a treasure.  I wish I could bottle the experience of yesterday afternoon and pour a serving as needed during the fall ahead.  We have a few more treats planned for the girls between now and Labor Day and hope their memories will help us through this next "push."

Siblings and Disabilities

"Isn't it better to see her legs and not carry her in those casts anymore?"  Our Pink Princess has returned to our home for additional summer fun and this was one of her first observations.  She was not with us for the urgent petrie cast removal or our two weeks of fretting between appointments.  Perhaps it's best that she was spared that experience.

I have lightly touched upon how siblings can be affected by disability in prior posts, but the topic deserves a revisit.  This weekend marks the first time that Big Sis saw Hip Chick with her legs free of traction or casting since February.  Big Sis is also in a unique situation because a vast majority of DDH cases involve firstborn females (from the mother).  As Big Sis is the household's first child, but was not my first pregnancy, she has an unusual view of watching a younger sibling experience the traction, surgeries, and castings necessary to correct hip dysplasia.

She admitted today that she is worried about her sister.  She asked why her sister needs more surgery and when they will stop.  When we began this journey, I had explained to our Pink Princess that some little girls only need one surgery while others need many.  I added that we would not know what kind of little girl G-d gave us until enough time passed to show us.  I revisited this conversation today, but this was clearly not the answer she was looking for.  

I wish I could explain to her why this is happening to her sister.  Unfortunately, scientists have no firm evidence as to what causes hip dysplasia.  I can imagine that explaining any disability to a sibling would be difficult, but the lack of definitive answers adds a layer of complexity to a sibling's experience- especially one who is still relatively young.

The experience of watching two siblings navigate disability together has inspired me to write a small children's book for the girls.  I have the general concept mapped out, but will need time to actually write it into a quality storyline.  I hope to give it to them as an upcoming holiday gift.

Meanwhile...

With the liberation of Hip Chick's legs behind us, we were ripe for additional summer activities.  Hip Chick "hops" a bit on her knees now and we thought that she was ready for a local soft play center, photo above.  The girls enjoyed exploring a rainforest themed play area, filled with tunnels and opportunities to climb.  Hip Chick would pull herself up a small incline, and then Big Sis would hold her hand and slide down alongside her.  I love those girls.

Afterward, we treated them to our local farmers market.  We enjoyed talking to them about where produce comes from and helping Hip Chick recall names of fruits and vegetables.  As we were leaving, we passed a fruit pop and slush stand with very creative offerings.  How could we say no?

A strawberry-lemon pop and a coconut-mango slush were the day's winners!  The girls were so excited with their treats that Mommy and Daddy hardly managed to steal a bite.

A fun outing, indeed.  I don't quite know how to present answers to Pink Princess about a disability that I haven't fully wrapped my own mind around... but experiences like these help us to make fun memories despite.  Perhaps that is the best medicine for us all.

Post Casting: Week 3

Our daughter's third week post-casting has brought our household some much-needed relief.  We have been waiting five months for a lull and a little normalcy has returned.  Although, after nearly half of a year of traction and casting, who can define how "normal" should look and feel?

First, I should note that I edited my last post due to a few updates we received from Scottish Rite late this week.  Most importantly: A different spica cast form has been selected for Hip Chick.  She will have a "strait leg" spica, which means she will be unable to sit in chairs or use her car seat.  We will use a harness to transport her.  Also, she will be casted for only eight weeks.  We will be unable to take her to restaurants during this timeframe... but Mommy feels surprisingly upbeat about this.  After 20 weeks of traction and casting, we can do anything for eight weeks!

Part of my lifted spirits are attributable to the concert Daddy and I attended this week.  It was our second date night in five months and long overdue.  A favorite uncle and auntie babysat while we boogied down with a great group of friends for some much needed stress relief.  I danced because my baby can't.  I danced because my baby will one day.  I danced because after six months of focusing on little more than hip dysplasia and work, my husband and I needed a night to do something for ourselves without anyone else to look after for a handful of hours.  And we will do a better job of taking time for ourselves during this next phase of Hip Chick's treatment.

Another factor in our household's disposition is that Hip Chick has nothing on her legs for the first time in five months.  Last night was a little rocky, but we had a few nights this week in which she slept through.  Aside from one instance during naptime at daycare, her night terrors have faded. So, her mental disposition seems to be improving.

Lastly, we received her surgery date and

it will be in September.  This gives us two months of much needed (and deserved) rest before our next push.  We are relieved that we have freedom to schedule some fun activities for the girls between now and surgery.  And with only eight weeks of casting, she should have it removed in time for Thanksgiving.  She won't be walking, but she could sit in a chair to enjoy her great aunt's beloved corn pudding.  For all of this, we have much to be grateful for.

Coming Soon to a Hip Near You: Osteotomy, Parts 1 and 2

Today was Hip Chick's two week follow up from her petrie cast removal.  Mommy and Daddy were tied in knots with anxiety about it, as we had a gut feeling regarding the news to come.  Our little hippie was in chipper spirits, however, and that helped settle our nerves somewhat.  Due to her bravery and physical cooperation at xray, Daddy let her snack on a box of Scottish Rite's buttery, freshly popped popcorn.  Popcorn and movies make great companions, so why not popcorn and xrays?

We quickly met the friendly faces of her medical team for her much-anticipated results.  Unfortunately, our gut feeling was correct:  More surgery will be needed- and a major one.  Hip Chick will require an open reduction, a salter pelvic osteotomy, and a femoral osteotomy.  

What does this mean?  In very simple terms, they will need to cut her pelvic bone to help reshape the hip socket.  They will need to cut the femoral head to angle it a little differently to meet her ajusted hip socket.  They may use pieces of bone that they remove from the femur to graft into the pelvis to help create a better socket shape.  She will require hardware (pins and screws) to hold these changes in place while the bone heals.  There is a good article regarding osteotomies on the International Hip Dysplasia Institute's website, link below:  

Child Treatment Methods: Osteotomy

After the osteotomies, she will spend two months in a spica cast.  After the casting, she will wear the Rhino Brace for a yet-to-be-determined period of time.  Six months after the osteotomies, she will return for another surgery to remove the hardware.  Her surgeon advised that it takes approximately six months for bone to heal, which is why the hardware cannot be removed before then.  The hardware cannot remain in her body for too long, however, or it will become encased her in bone as it grows and cause problems in the future.  The hardware removal is a more minor procedure in comparison and will not require casting.

And so it is.  Our hip dysplasia "sprint" of the past five months has now become a 5K.  Not exactly the G-rated, happy-go-lucky plotline we hoped for... but we can all agree that "Goonies never say die."

Below are our additional thoughts:

1. When will her open reduction and osteotomies be scheduled?  

The surgery will be scheduled for either late August or mid-September, depending on her surgeon's availability.  Regardless of the week it is scheduled, it will occur on a Monday.

2. What will need to occur to prepare for this surgery?

She has a pre-op appointment the Tuesday prior to surgery.  It will be a four to six hour process, to include an xray to check her femoral head's position.

3.  What are the risks of this surgery?

There is a very minor chance of hemorrhage.  There is the potential for avascular necrosis.  This means that circulation to the femoral head could be lost to some degree.  There is the potential for arthritic conditions later in life.

4. What are the risks if we do not complete this surgery?

While there is no certainty as to what her exact presentation of hip dysplasia could manifest later in life, the worst possibility includes the need for a full hip replacement in early adulthood.  

5. Why perform this surgery now?

Her surgeon advised that age is a factor in long-term success and the earlier, the better.  If we can correct her hip before she begins grade school, there is a good chance that her hip will show little to no sign of these pelvic surgeries in adulthood.  

6. Will this affect her ability to have children?

Her surgeon advised that she will still be able to have children.  I also polled my support group on the matter.  Of the responses I received, the women who had their hip dysplasia resolved in early childhood were able to have normal pregnancies and deliveries.  The ones who had surgery later in childhood had an elevated chance of cesarean.  The ones who never had their hip dysplasia corrected incurred debilitating pain during pregnancy and the pain never resolved for some.  

7. Will she continue to wear the Rhino Brace until surgery?

No.  The brace has been the source of much angst for Hip Chick and she appears to be in quite a bit of pain upon waking each morning.  She has also developed night terrors, which we suspect are related to the brace, her events of the past five months, or a combination thereof.  She had been screaming and shrieking at night with varying intervals, with questionable reasoning, and with limited response to us.  Last night, we pulled her out of bed and she shrieked for a bit of time without responding to our attempts to communicate or soothe her.  Inexplicably and suddenly, she fell back asleep on Daddy's chest.  

We discussed all of this with her surgeon today.  He advised that any improvements made prior to surgery from wearing the brace would be very minimal.  As she is obviously stressed and the household is not sleeping, she will be relieved from the brace until November or December of this year.

8. Will this development change our childcare situation?

We were eternally grateful and thankful to learn that her daycare will still partner with us regarding her care.  After her appointment today, I called to relay the news and ask her daycare to honestly consider whether they could still care for her in their classroom setting.  Tears welled in my eyes as we hung up and the teachers conferenced to decide.  I could not blame them if they said no- many institutions would.  But what would we do if they could not?  Who could take as good care of her as they do?  

Tears spilled again when they called back to indicate that, yes, we could still partner on Hip Chick's care.  It is one of the biggest gifts we could hope for. 

9. Will she require different equipment at home or school after surgery than before?

We will need to return the Hippo car seat that Scottish Rite leant us and exchange it for a harness.  She will soon move into the next class at daycare and this class may need a few new tools to help manage her care.  I am stopping by on Thursday afternoon for a quick conference to brainstorm.

10.  When will she walk again?

Her surgeon advised today that most children spend the same amount of time regaining mobility as they spent casted.  Hip Chick may not fully regain her ability to walk prior to her next surgery.  It would be prudent for us to anticipate she will take at least three months to regain mobility after her next casting phase.  It is our hope and dream to see her walk by her third birthday.

Post Casting: Week 2 Recap

Our daughter's second week "post casting" is drawing to a close.  It was a week of incremental progression- for both Mommy and baby.  Hip Chick returned to daycare this week and Mommy had a little difficulty letting go.  I felt like Marlin from Finding Nemo, desperate to protect my child and her "lucky fin" from the outside world.  I called two, if not three times, the first day and picked her up mid-afternoon.  By week's end, she participated for a full day and I managed to avoid calling.  We each have a little growing to do.

Below are our latest thoughts:

1. When her petrie cast was removed, her legs were slathered in thick, flakey, yellow scales- how do her legs look now?

Her legs shed constantly after cast removal and the final scales fell off approximately eight or nine days later.  Her legs were a bit bruised and scuffed under the scales and are still healing.  

What we found most surprising about her legs' condition was the oodles of hair we discovered under the scales.  When she finished molting, she looked like Tarzan's sister.  I was curious as to how common it is for children to leave their extensive casting with fur and polled my ever-ready support group of DDH moms.  I received marked feedback, all stating that their children had grown surprising amounts of hair under their casts and it took up to a year for the hair to fall off.  Our bodies are fantastic, aren't they?  We have the most surprising defense mechanisms programmed into our genetic code.

2. How is her mobility progressing?  

She can crawl on her knees for greater lengths of time, bit still army crawls mostly.  She can stand on her right leg for increasing periods of time as well.  She attempts to walk as often as possible, but her leg strength has not yet caught up with her determination.  To "walk," she holds onto our hands while her legs bob as though she is a marionette.

3. How has she adjusted to the Rhino Brace?  

At first, she would fuss at us for placing her into the brace.  Now, she argues against us removing it in the morning.  Her left leg's first movement out of the brace each morning seems to be a source of pain and frustration for her.  Within a half hour, she appears to have moved past it.  She has also learned how to maneuver in the brace.  It is lighter and less confining than the spica, but the positioning is more comfortable for her.

4. Are nights growing easier yet?

She still whimpers and fusses in her sleep.  This keeps the household a bit jumpy, as she seems to wake about four times an hour.

5. How are outings progressing?  

Much easier than the casts!  Since she can fit into shopping carts and restaurant high chairs, we have more freedom.  Yesterday, I took her shopping and out to lunch on my own!  We visited our local Puple Cow Diner (photo above).I have missed our mommy-daughter dates.  Today, she will visit my mother and grandmother's house for the first time this year.  

We still have opportunities, though.  Last night, we attended a kid-friendly dinner party at a friend's home.  Everyone was very kind and gracious, but I found myself silently comparing her to the other children in terms of development and fought the urge to make excuses for her crippled leg.  I also need to round myself out a bit- since her diagnosis six months ago, I have focused on little other than DDH and work... which means I have little to offer in conversation aside from those topics.  Regardless of Tuesday's news, it's time for me to invest a little more in my own interests.  

6.  Speaking of development, how is she progressing at daycare?

Due to all of the changes in early July and this Tuesday's appointment, her progression has been slightly delayed.  She will be about one to two months behind her peers in moving to the next class, which is minor in the scope of everything on her plate.  

Hip Chick is a smart chick and she will do just fine once we receive more direction regarding her mobility concerns this week.  Of course, we will need to pair with her daycare after Tuesday's appointment.  We are endlessly thankful for their partnership and need to ensure we are all comfortable with what needs to occur next to manage her care.

Post Casting: Week 1 Recap

Our daughter has completed her first week post-casting.  It has been a bumpy one, both physically and emotionally.  I am a little short of clever lead-ins today, so we'll move straight into the Q &A.

1. How has Hip Chick's pain management progressed?

We are relieved to relay that her pain is sufficiently managed with Lortab at night and massage during the day.  We have not taken her to the pool since Sunday due to more active days, but will resume soon.

2. Are we managing her care at home until the next appointment?

She remained at home last week, but she began a transition this week.  Our daughter returned for a partial day at daycare yesterday and a full day today.  Her daycare teachers are true partners.  As long as they can manage her as part of the class, we want to provide her with as much normalcy as possible.  This also allows Mommy and Daddy to work... there are medical bills to pay.

3.  How are her gross motor skills progressing?  

Incrementally.  The photo above displays the bent position in which she holds her left leg most of the time.  If she attempts to place weight onto her left foot, it is usually on the side of her foot, nearly sideways.  However- her daycare teachers were excited to report that she had crawled on all fours for a short bit today, and that is worth celebrating!  We doubt that she will be able to withstand much weight on her left leg for some time.

4.  How is her disposition?

Now that the pain has diminished, her disposition is growing less volitile and more chipper.  One of her teachers remarked today about what an inspiration she is to maintain as much of  her happy-go-lucky attitude in a situation which would throw many adults into depression.  The teacher mentioned that she is so inspired that she tells others in her life about our daughter.

This isn't to say that bad moments elude Hip Chick.  Her storms are full of electricity and turbulence.  In example: Last night, she insisted to attempt pulling herself into a standing position unaided.  She gripped the edges of our stout coffee table and struggled with all of her might- without moving an inch.  It frustrated her so that she screamed with shrill, blustery gusts until her lungs tired.  No measure of comforting relaxed her- she had to scream this one out.  

5. The spica casts had a large impact on the household's sleep patterns.  Is this smoothing out now that she wears the Rhino Brace at night?

Not yet.  We are very relieved that the midnight shrieks of the past two weeks are waning.  Unfortunately, she continues to have interrupted and restless sleep.  When she does sleep, she whimpers.  Mommy and Daddy still don't rest very much.

6. How are Mom and Dad's disposition?

We are in a period of dichotomy.  We do our best to be happy for her and cheer her attempts at mobility... but we are plagued with the foresight that progressing to more surgery means she will just be robbed of it again- and soon. The guilt is nearly unbearable at times.  

We are also processing the mental hurdle of Hip Chick's hip dysplasia transitioning from a short term ailment to a longer term disability.  Until now, we were driven by our daughter's hip achieving each "best case" milestone.  The petrie cast complication has forced us to lock eyes and touch noses with a reality we were unprepared to accept.  But... perhaps I am speaking prematurely.  We have not yet received the official word.

7.  When and what is the next milestone?

One week from today.  She will continue to wear the Rhino Brace at night until then.  At that appointment, she will have an xray.  Pending the results, the next phase of her hip's treatment will be determined.

Post Casting: Day 5

Hip Chick has turned a corner over the past two days.  Most importantly, her pain is finally under control.  We find that her biggest aid is a "water therapy" of sorts.  It doesn't take but 30 to 45 minutes of floating and gentle movement of her left leg in the pool.  After pool time, she is noticeably more active.  I also take time for extra massage of her calves and quads as a proactive measure against muscle spasms.  

She still holds her left leg in a slightly bent position, but it is no longer folded up most of the time.  She has attempted to place weight on it a couple of times (while standing on her good leg) and has drawn herself onto all fours several times in attempt to crawl.  She also made a stab at walking today, which we were thrilled to see.  She still could not straighten her leg to take steps, however, and will need to strengthen her legs more before she will have enough balance to walk.  

She has no shortage of initiative or drive.  I am just relived to see that she is moving her left leg at all... mobility will come whenever it comes.  The reality of regaining it is a far cry from Uma Thurman's performance in Kill Bill Volume 1.

In the meantime, we are finding joy in surprising areas- such as the ability to use a standard restaurant high chair.  We haven't been able to do this since Feb!  We parents easily take little details for granted once our children have progressed developmentally.  Something as simple as a high chair can make a large impact in our household's quality of life.

We are also able to place her in shopping carts and normal car seats for the first time since February.  This frees us to carry her along for errands as we please, split daycare drop off and pick up duties, and socialize her more.  Hooray!

Lastly, I wanted to provide a view of Hip Chick wearing the Rhino Brace that is currently addressing her partially dislocated hip.  She wears it at night only and it holds her legs in this frog-like position.  It is much easier to manage than any of her three casts, but holds her in a similar position as her two spicas did- which feels very familiar to Mommy and Daddy.  

Much is riding on her hip's response to this brace, even though she will wear it for a rather brief period of time before some rather weighty decisions are made.  (Two weeks of bracing versus a 17 week casting assignment shortened to 14 due to subluxation.)  Nine days to go...

July 4th and Belated 2 Year Checkup

What a few days it has been.  The way Hip Chick's cast removal came about was such a surprise and under such different circumstances than we envisioned that the fanfare we originally planned was tabled.  But as this week was Independence Day, we were still able to help her celebrate a liberation of sorts.

Her lone obstacle this week has been her left leg, which of course is the same side as her subluxed hip.  For her first few days without the cast, she held her left leg bent and somewhat folded most of the time.  She even went so far as to stand on her good leg, still holding the left one up- she resembled a flamingo.  She would "crawl" mostly by dragging her legs along the floor, similar to when she was in the spica.  

By last night, she did briefly sit with her left leg out more directly in front of her.  Perhaps this was achieved due to the time we afforded her in a swimming pool yesterday.  Our dear friends and neighbors generously invited us over and so we gave her the opportunity to float and splash to her heart's content.  She kicked her right leg a bit, but did not use her left leg much on her own.  I did gently move her left leg a little- mostly by bending it at the knee.  Baby steps.

Such a far cry from last summer.  Due to her love of water, we had enrolled her in a weekly swim class at a popular local school.  By summer's end, our little tadpole could swim under water for seven seconds- she actually swam before she walked.  

Hot dogs, pool time, a long nap, and sparklers were good for her disposition.  We also discovered that she can sit comfortably at a toy piano, which she loved.

Unfortunately, yesterday's activity was followed by a restless night of screaming.  Regaining her mobility has a bit of a toll.  It's amazing how much time and energy we placed into her casting, dreaming of what regained use of her legs would bring her... but we never envisioned what the period between cast removal and mobility would contain.  Most of us walk as we please, not considering for even a second what a true gift that ability to walk is.

Today, I took her to her pediatrician's office for a belated two year check up.  We had delayed it due to her extensive casting, but I wanted to complete it as quickly as possible due to the potential surgery (and more casting) ahead of us.  I found it interesting that she had not gained much weight, if any, over the past five months.  Her height, however, is another story. She had a growth spurt and is now in the 95th percentile for height in her age range.  A growth spurt- and we missed it.  Due to her health issues, we had to measure her while laying down, like an infant.

We would love to see her stand tall!  When will this be?  Will she be able to do it without another surgery?  With a subluxed hip before surgery?  If not, will we even see her stand straight before end of this year?  

Her pediatrician's nurse asked me about potty training.  Unfortunately, spica casts and petrie casts don't exactly enable such things.  But this begs some important questions: If she has another surgery and more casting, when will she potty train?  If she needs even more surgeries, will we eventually have to potty train her in a cast?

So many questions... and 11 days until she has the xray which will direct us.  

Goodbye, Petrie Cast... Hello Rhino Brace

No legendary heroine overcomes great odds without a setback of sorts and today one surfaced for our daughter.  She visited Scottish Rite to reinforce her petrie cast and have a precautionary xray early this morning.  Unfortunately, the xray exposed that her femoral head has begun to pull away from her socket.  It is not (yet) fully dislocated, but required immediate attention.

As it was obvious that the petrie cast was not helping her, cast removal accelerated to today.  Now, her surgeon is redirecting her from casting to orthotics.  She has been fitted for a Rhino Brace (photo, above).  She will wear it to sleep during the next two weeks.  Her surgeon wants to see whether this will stop her femur's migration.  At her next appointment on July 16th, she will have another xray.  If all looks good, we will discuss how to progress with the brace.  If not, we will schedule an open reduction, most likely accompanied by a pelvic osteotomy.  Her surgeon advised that he is still hopeful and so we will do our best to remain as well- although doubts are starting to blur our thoughts.

Now the question lurking in everyone's mind is: If we have to schedule an open reduction, have the past 4 1/2 months been a failure?  Not necessarily.  Her hip responded to each step as well as hoped, until now.  Her surgeon has been very cautious and plain spoken from the start.  Her hip socket's malformation and the late age of her diagnosis have prompted him to be reserved in his projections and, well, he had advised all along that this could occur.  But he does seem to think that the work we have done thus far could help her avoid a femoral osteotomy.  This is a good thing.  More on that subject later... we have two weeks of hope ahead of us! That is a gift that not everyone is afforded.

The immediate task at hand was addressing these super scaley legs.  What a far cry from the legs we tearfully bid goodbye 4 1/2 months ago!  Her surgeon advised a bubble bath to help relieve her legs and who am I to go against medical advice?  And so we treated her to her first bath since February 23rd.

I had a new set of bathtub flutes set aside for such an occasion.  (Who doesn't keep an emergency set of tub flutes on hand?)  Mommy seemed a bit more excited by them than Hip Chick, so I pulled out her old favorites.

She seemed a little apprehensive at first, but 

it was mere moments before she was singing and splashing.  We saw glimpses of her that had faded after that last bath in February- being in the water brings her such joy!  She asked me to let her swim and a lump swelled in my throat.

Oh, how I have mised these times!  Petrie cast or no... this was a special memory.  Even if she must progress to a more invasive means of treatment, perhaps it is best that she be afforded a little break.  A bit of extra happiness is good for the soul.

Petrie Cast Angst

I had anticipated that my next post would be a sunny recant of positive progression, including a return to daycare today.  I expected to refer to Big Sister's recent insight to having a sister with special needs.  And these will come.  

However...

Upon picking Hip Chick up from her first day in daycare with the petrie, I was met with upsetting news:  the bar connecting her shins has a weak spot.  The photo above is of the location where the bar has become wobbly... and it is wobbly on the same side as her bad hip.

Sigh.

We called Scottish Rite and were advised by the on call physician that she needs to be seen tomorrow.  An xray is needed to ensure her hip has not become unstable or begun to sublux.  Pending good news, her cast can be reinforced and we continue along her current plan.  And bad news?

Late last month, our family watched a "North America" nature special.  Part of this program featured an awe-inspiring detail of a mother falcon, aggressively combating larger birds and snakes to defend her nest.  It was at this time that our Pink Princess asked whether I could be  that falcon.  

Tonight, I wish I was that falcon.  I wish I could fight hip dysplasia with talons, screeches, and dive bombs.  Everything has progressed according to plan thus far, so logical thought would rally us for taking a proactive approach and calling when the wobbly cast is only a week old.  Tomorrow will give us new insight, but that does not quell Mommy's angst for tonight.

In the meantime...

Big Sis recently returned to her mother's home after a two week stay at ours.  I treated her to a movie on Saturday, for some "big girl" time.  During our drive I asked her whether it has been hard on her these past few months, having a sister with special needs due to a bad hip.  I asked what she has learned.  She responded by telling me that she feels protective over her little sister, especially when we go to restaurants.  She said that she sees people staring at her little sister and it makes her upset.  

I took this as a teaching moment and advised her to remember that feeling when she sees other families in public like ours.  I advised her not to stare at other people with special problems.  But she seemed to exceed me in insight that day.  A good lesson, indeed.