Two Turtle Hugs

On the second day of spica, my true love gave to me:

Two turtle hugs...

Today, Daddy and I took Hip Chick to the pet store to pick up supplies for our dog and possibly our fish tank.  She has recently become enamoured with the sea turtles in Finding Nemo and so we thought she may enjoy petting a tortoise.  

We were wrong.

The store clerk kindly pulled out the tortoise and explained that it would likely live 50 to 75 years.  Hip Chick was squeamish while merely looking at her fellow green armored friend, but melted into full hysterics when invited to hold it.  Daddy held the tortoise and Mommy petted it, but nothing stopped her squeals of terror until it was lovingly placed back into its quiet home.

No new friends made today, but an educational outing at least.

And to follow the traditional carol's format, we must repeat:

...and a babysitter, parents' night free!

Twelve Days of Spica

There comes a time in a parents' life in which you answer your calling.  You have an occasion to rise to.  You understand your purpose at that moment in time.

Counting today, Hip Chick has twelve days until cast-off.  For this momentous event, to honor her six months of casting in 2013, Daddy and I bring you "The Twelve Days of Spica,"  lovingly adapted from a well-known carol.  Each day, we bring you a new verse.  And so we begin:

On the first day of spica my true love gave to me:

A babysitter, parents' night free!

Thanksgiving

This is a special post.  With our country focused on gratitude this week, the timing is right for a little appreciation from the Hip Chick household.  Today's editorial diverts from the usual Thanksgiving mention of family, friends, food, and home (although we are, indeed, thankful for all of the above) to highlight some little known heroes in the hip dysplasia (DDH) community.  

As mentioned in prior posts, I belong to an international hip dysplasia support group, comprised mostly of parents like me.  I was introduced by one of the authors of our beloved Hope the Hip Hippo children's book.  She stumbled upon my first blog post about her book and invited me to join!  Over the course of this year, some spectacular things have arisen from within this DDH community.  The International Hip Dysplasia Institute and One Hip World are gaining more traction, thanks to support group members.  One Hip World has named a Parent and Child Advocate.  This tireless woman has helped mobilize doners of DDH supplies for giveaways to group members... supplies which members may not have known about or afforded on their own.  Many products parents use to manage their child's treatment plan are discovered via word of mouth or hours of internet surfing.

So, todays' s post is in gratitude of these persons and organizations, without whom I and many others would be lacking knowledge and resources (formal names withheld for privacy purposes):

Hope the Hip Hippo author GJ, as her introduction helped me feel a lot less lonely during a rather scary and uncertain time

Parent/Child Advocate KF, for enabling so many families to receive extra tools to manage their child's DDH journey.

For my fellow Texan and DDH jill-of-all-trades AH, for having the vision to begin national fundraising efforts... and stitch a stylish line of spica cast bloomers!

To the following companies, for donating products to One Hip World's Parent/Child Advocate:

Boba Carriers

Cast Cooler

Hunter House Publishers, for donating copies of The Parents' Guide to Hip Dysplasia by Betsy Miller

IvyRose Spica Chairs 

Snug Seat

Lastly, a combined thank you to IvyRose Spica Chairs and Traction Program Coordinator EE, for working with me and together on a personal project this past summer.

With sparks of passion and drive, a few people can bring so much positivity to the world.  What can you and I do today?

Post Osteotomies: Week 10 Recap

Two weeks until cast-off!  It nearly sounds too good to be true.  With 24 weeks of casting behind us year to date, we are hoping for glimpses of the finish line... or is it a mirage?  Will we receive the news we hope for at her upcoming appointment, or will we relive the summer's rollercoaster of emotions?  Does relief or heartbreak await our family?  The answers around the corner contain many implications for the year ahead... are we prepared for what those may be?

Meanwhile, the holiday season is upon us.  One cannot help but feel a little more deeply this time of year.  Traditions, culture, religion, and folklore reinforce a magical, miraculous ability to have wishes granted and the supernatural occur.  What does this mean for our Hip Chick? Am I to believe that her hip's disposition will be any different in two weeks because of the time of the year?  Am I to believe that, if the answer is not what we hope for, it is because some diety is making her suffer innocently for Mommy and Daddy's "incorrect" religious beliefs or imperfect observance?  People hold remarkable opinions about such things.

Perhaps the best frame of mind for us this holiday season is to be grateful for what we have, mindful of the human condition's fragility, and to forgive the mistakes which brought us to where we are today.  That last part is tough for me and I imagine it could be for anyone in similar shoes.  How many of us play "what if" as the imperfect choices repeat in our heads?  What if we had selected a different pediatrician?  What if we had requested a second opinion earlier?  What if... what if... what if...

The problem with "what ifs" is that they can never happen.  They can never resolve today's problems.  They can never bring us peace.  They can never carry us to where we hope to progress.  Playing "what if" inherently renders us incapable of appreciating the gifts before us or rising to our situation.  For our situation,  it also would prevent us from empowering Hip Chick.

Below are additional thoughts:

1.  Prior posts indicated sleep deprivation throughout the household... has this improved?
In short- no.  Just this past week, there were several nights in which Hip Chick could not settle into sleep until 11pm and was awake before 4am.  We hope she will sleep more soundly once her cast is removed and she has greater mobility.

2.  Has her mobility progressed since last week?
Yes!  She can roll independently (front to back and back to front) to her heart's desire.  She spends more time cruising furniture and has begun to balance on one leg (photo below).  She has also begun spending more time balanced on her side than before.

3.  Does she have any lingering pain Iissues?

Prior to this week, I would have said no.  Twice in the past several days, however, she has complained of minor pain where her femoral plate is.  With the volatility of this week's weather, I question whether she is sensitive to climate changes like arthritis sufferers are.  We will ask her surgeon about this at her next visit.

4.  Does she still use her spica desk?

She had not used it for much of this casting phase and recently requested to begin playing in it again.  

5.  What activities are we filling her time with?  I have begun cooking with her more often, as that is interactive and something I had not done much with her this year.  Otherwise, we are all burned out on a lot of her available activities and are letting her indulge a bit more in tv and movies for the next couple of weeks.  We will pull this back after the cast is removed... even the best family can get burned out after nine months of strain.

6.  What types of stories is Hip Chick interested in?

She is drawn to stories in which children move in extraordinary ways (Peter Pan, Bubble Guppies, Tarzan) or stories about animals.  She does not seem drawn to stories about "normal" types of people, such as princess stories.  She does, however, identify with Doc McStuffins. 

7.  What other ideas do we have to break up the monotony?

Daddy and I were fortunate enough to have a babysitter last night!  This provided Hip Chick with a fresh perspective and us parents to watch an adult movie and eat in a quiet restaurant together.  This was a much-needed break for all.

8.  How are we dressing her and the cast for winter?

With the addition of our home's heater, Hip Chick has become an exhibitionist.  We are hard pressed to keep clothes on her at home.  She is constantly ripping off shirts and finding creative ways to scrape off shoes.  The cast seems to insulate her well.

9.  Does Hip Chick think her cast is forever?

No, we have begun to prepare her for cast removal.  She can verbalize that it will be removed in two weeks and we are talking to her about the new things she can do once it's removed.  We hope and pray these projections do come true.

Time Bomb

It was a sleepless night and frigid morning, the scent of our first night's heat wafting through the house.  Hip Chick's hair was frizzed with signs of a 3am awakening.  Daddy and I, fueled by four cups of coffee, pushing adrenal exhaustion... 

and... IT... happened...

Hip Chick had awakened with the ravenous appetite of a yet-to-be-discovered creature from Jurassic Park.  As Daddy and I switched off, we carefully fed her like a dangerous, caged zoo animal while she double-fisted two breakfast drinks and cheered on Disney's Cars as though she was at a NASCAR event.  Unfortunately, this red eye smorgasbord included three oranges.  If we had only foreseen...

The explosion occurred at approximately 11:30am.  It oozed up and out everywhere, it seemed.  She was what I envisioned a child rescued from a California mudslide would resemble.  I have never before indulged in one of those luxurious spa mud wraps... and may not ever after cleaning this mess.

It took an entire box of baby wipes to clean her and the cast lining.  (Note: it is unlikely to fully clean such leaks from spica casts and we must be careful regarding what we put on skin under the cast!!) Imagine Hip Chick in her cast, laying across my lap, arms flailing, feet wagging like epileptic pinball flippers, and howling for Daddy to save her from my thorough scouring.  I silently thanked her surgeon for providing such a roomy bodice for this cast, as I capitalized on the opportunuty to take a damp cloth with baby soap and wipe every part of her body I could possibly reach.  Two weeks left in her casting assignment and I was far less concerned about the potential for minute cast warping as compared to her smelling like a dumpster for Thanksgiving.

So close and yet still challenged!  Currently, she is napping in her room after an admirable rally attempt, possibly dreaming that her tiger is eating Mommy this time.  

Counting the days...

Post Osteotomies: Week 9 Recap

Three more weeks!!  Our little hippie has three weeks remaining until cast-off.  We are now past the midpoint for this fifth cast, which brings about an air of electricity regarding the matter.  

Today, we attempted to teach Hip Chick her first board game:  Candyland.  As the pieces skipped about the colored spaces, I noticed a bit of similarity between the game and our experience this year.  We were placed at the starting line at her diagnosis in January.  As she hit each "best case" milestone for the traction and closed reduction route, it was as though we skipped all of the setbacks offered by the game:  no returns to the peanut brittle house, no getting stuck on licorice for a turn.  But as we thought we neared the finish line, we drew the dreaded "gumdrop" card, casting us nearly back to our start.  What do the cards hold for her next month?  Just how near to the finish line are we really?

Meanwhile, we had a special task at hand this weekend: celebrating Daddy's birthday!  Big sis provided the concept for his birthday cake ("monster eyes") and I simply enabled her imagination to realize.  While Big Sis and I did most of the work, Hip Chick was excited to help ice the cake.  We also enlisted her aid in making the eyeballs (M&Ms stuffed into marshmallows), but I suspect she ate more than she assembled.  A fun afternoon, indeed.

Below are our most recent thoughts:

1.  It was relayed a couple of weeks ago that Hip Chick had resumed her antics- what has she done lately?

She can now flip herself from a seated position on the couch onto her stomach and push herself down into a standing position.  She has achieved similar feats from Mommy and Daddy's bed.  She can also "cruise" along furniture.  

2.  How is her relationship with classmates progressing?

Late last week, Daddy witnessed a classmate attempting to steal a toy from her desk.  She protested, but the classmate succeeded and ran away with the toy.  As he ran, she picked up another toy from her desk, pitched it in big league fashion, and pegged the classmate square in the center of his back, causing him to cry out.  Her teacher then advised Daddy that Hip Chick has developed quite the arm.  With that said, she seems to be doing just fine!

3.  It was relayed in a prior post that she often dreams of flying.  Have we noticed additional signs of escapism and/or potential psychological effects?

She continues to tell us that she dreams most nights of fairies and flying.  One of her teachers remarked to Mommy that this must be her means of achieving freedom and independence.  Just this past week, she began telling us of a tiger in her room at night.  She tells us that it sleeps in a cave, but comes into her room overnight.  It does not hurt her, but it watches over her and hugs her.  Some nights, she says it eats certain family members.  We cannot say exactly what this means.  One consolation, however, is the fact that Mommy had a rather vivid imaginary friend, Frankie the Lion, around the same age.  We could ponder the "nature vs. nurture" debate on that one for months.

4.  How is Big Sis weathering this final cast?  

She continues to impress us during her weekends at our home.  She is rather mature and understanding regarding the situation.  As I have mentioned numerous times, it works to her advantage that she is not at our home full-time.  I expect that it would be different for a more traditional sibling arrangement, although most children with hip dysplasia are firstborn.  

5.  How are Mommy and Daddy's disposition?

We are feeling drained, but are fueled by the hope that Hip Chick's casted days will be behind her in three weeks.  There are no guarantees, of course.  

6.  When her cast is removed, does that mean life can quickly return to how we previously knew it?

Not necessarily, and it would be naive for anyone to expect that Hip Chick would immediately begin living life as a typical little girl after 26 weeks in casts and four weeks in traction this year.  As before, she will likely be sensitive and experience some degree of pain for the first week after the cast is removed.  We have to ensure the hip stays together, as there is still the potential for her hip to redislocate.  She will have to relearn to walk- her third time to learn to walk in the past 16 months.  If her hip does remain in tact, she can learn to run, dance, and climb.  

I have noticed my other support group moms mention their "hip" kids often tire quickly.  Others relay months of bracing after the surgeries and casting, some with physical therapy requirements.  We will learn next month what Scottish Rite's process is.  For the vast majority, the one year anniversary of their child's osteotomies is an important marker, at which decisions regarding additional surgeries may be made.  Therefore, while our daughter's and family's quality of life has the potential to improve dramatically over the next couple of months, her journey will continue to take us far beyond December's cast removal.  Even in a best case scenario, she will continue to require regular appointments and imaging until her skeletal development matures in about 15 years.  

But, as always, we remain hopeful.

Post Osteotomies: Week 8 Recap

Four weeks to go!  We are officially in the one month countdown until "cast off."  Two months of casting have passed since her osteotomies and she has had 22 weeks of casting in total, this far this year.  

One year ago, we took our first trip as a foursome, to meet even more relatives out of town for a special event.  I snapped the photo above one morning during a family stroll.  What different plans we had for 2013 at that time!  I look at photos of her walking last year (with her limp) and wonder how she will walk when she relearns again.  At 2 1/2, she has walked for no more than seven months total in her lifetime.  What will it be like for her to walk "normally?"  How fast will she run?

As for a weekly update, there is not much to elaborate on.  Namely, because I have been rather ill and so we have not spent any free time outside the house.  While Daddy is always a partner, he kicked in quite a bit more with Hip Chick and the household over the past week.  It's one thing caring for a 2 1/2 yr old in a spica cast- but a different ballgame when a parent's health is compromised.  How I admire any single moms or military wives who have had to do this on their own!  It is possible to do this one one's own- but it always helps to have a partner share the load.

And so we wait.  Four weeks until cast off.  Then, she can learn to walk for the third time in her life.  After hardware removal in January, the rest is up to her growth pattern and initiative.  The latter of which I suspect will exceed expectations.  Let's hope her body can keep up with her drive.

Justification Generation

This blog is centered on a young child's Developmental Hip Dysplasia journey, but today I divert.  I just couldn't help myself.

Thanks to the popularity of social media outlets such as Facebook for my generation, we have an unparalleled intimate-yet-distant voyerism into others' households.  This juicy peek not only prompts snapshot judgments, it also makes us competitive in ways that would have made our grandparents' skin crawl.  Now, the proverbial "keeping up with the Jonses" has expanded way beyond the home and car of our dreams.  We compete on the minutia of ingredients we sneak into home cooked meals... how much more we know about politics than the next guy... how multitasked our kids are... how non-mainstream we are... how much we multitask our kids during our non-mainstream workout...

Enter:  the justfication.

Not only do we feel the need to prove to the world how expertly we can breastfeed while winning a triathalon with a gourmet paleo meal cooking in the solar powered crockpot (all during that boring Wednesday conference call), we need to post on social media sites why others "suck" for not making our decisions.  Why our choices make us better than everyone else.  Why our children will turn out better than everyone else's.  Why our decisions alone are elevating humanity to that next evolution in consciousness.  And what makes this easy... or easy to pretend that we aren't being pompous- just confirming to the world that we made the right decision?

Enter:  "the link."

Nothing proves how right we are than posting a link to someone else's obnoxiously worded article or blog, ranting about how our point of view is correct and everyone else is a dimwitted oaf.  Or commenting on our own link to imply that anyone with a different philosophy or lifestyle is low brow.  Unfortunately, I have seen this apply to parenting.  We justify spending more time with our kids, less time with our kids, teaching them three languages in preschool, giving them a "Montessori" education, feeding them an organic diet... a vegan diet... an organic vegan diet cultivated strictly by quinoa-fed orphans who listened to Stravinsky at their Montessori academy...

Really, America?!

Perhaps a better measure of our parenting success would be how little we need to use others' diatribes to justify our decisions.  Perhaps our children would become more successful, well-adjusted adults if we didn't set an example of relying on virtual strangers to approve how we raise them.  Perhaps a little more self-confidence on our behalf would help them identify it in themselves.  Perhaps building character in our children would make it less necessary for us to obsess about which toys to deprive them or which classes to overschedule them with... or which toys our friends are depriving their kids of so we can execute a better deprivation on our own and then post a link to someone's blog about how people who don't deprive their children are unenlightened.

My Hip Chick drinks organic milk and eats Cheetos.  She enjoys being read to and watching Peter Pan.  She can sing songs by Jim James as happily as Twinkle Twinkle Little Star.  She likes pink and has a mean pitching arm in the making.  All because that is who she naturally is.  Which is one of the best parenting lessons a mother can ask for.

Post Osteotomies: Week 7 Recap

Our daughter has completed her first week in her fifth cast, her seventh week after "the big surgery," and her 21st total week of casting this year.  G-d willing, we are in "countdown" to put all of this casting behind.  Five weeks to go!  

As for this week specifically, what a difference a cast makes!  While we are still combating sleep issues, Hip Chick's overall disposition has shifted.  She wants to move.  She will announce, "I need to crawl, crawl, CRAWL!!" and then army crawl as she did in her first two spica casts.  She is also eager to stand.  Her first attempt was pictured above.

By week's end, she was insisting we let her attempt to stand unaided.  Up to her old antics, indeed!  This increased mobility makes her happy and helps burn energy.  Good news for everyone!  Below are additional thoughts.

1.  Aside from increased mobility, what else is different with this cast?

The diapering hole and torso are roomier than ever.  Unfortunately, this means we have more diaper leaks than ever.  The width of the diapering hole leaves gaps on either side of the diaper's crotch and the torso no longer helps to fully secure the diaper at her pelvis.  While the crotch issue can be managed by more frequent diaper changes, the pelvis is another issue.  With her crawling so much more and insisting on a stomach sleeping position, urine can stream up her chest.  (Cue a Charlie Brown AARGH!!)  We finally seem to have it remedied by stuffing additional menstrual pads down the front of her cast for sleeping and/or extended tummy time.

2.  With all of the aforementioned roominess, has her smuggling career resumed?

She will stuff anything she thinks she can get away with down the cast- especially clothing.  She seems to have a game of pulling off the shirt or dress she is wearing and stuffing it down the front of her cast to see whether it will completely submerge.  She also likes to rest with her hand stuck down her cast, like Napolean.  

3.  Hip Chick has had additional social exposure aside of Big Sister and the daycare as of late.  How has she reacted to other children?

Usually, she pays most unfamiliar children little attention.  There was a slight exception at our Halloween block party last week.  There were two girls she had played with before and several new playmates.  She felt left out when thry began playing tag and wanted Mommy to run with her to tag the other children.  She simply does not want to be left behind!  

Soon, little one, very soon...

4.  Including traction, Hip Chick has now spent a total of six months, or 20% of her life to date, physically restrained in some form or fashion... how has this impacted her?

She likes to sing and "dance" to music- she tells us that she will be a ballerina one day.  She also loves fantasy.  She enjoys tales of flying, magic, superheroes, mermaids, dragons, fairies... anything which takes an ordinary child and enables them to do unusual things.  Part of this is her age, but she must enjoy imagining herself doing such things.  She still tells us most mornings that she dreamt of fairies and flying overnight.

On another note, she inherited a bit of Mommy's natural OCD tendencies and that aspect of her personality has exploded.  We will never know whether this was exacerbated by the immobility or simply a natural progression.  She is very specific in how she wants things done (don't peel a banana the wrong way) or who she wants doing it (only Mommy can fix her socks).  She quickly adopts routines and does not handle surprises well (don't substitute a banana for her morning cereal bar without prior notification).

5.  How are Mommy and Daddy's disposition?

If this second round of surgery and casting truly resolves her issues, Daddy and I will be the happiest parents on Earth in 2014!  Yet... there are no guarantees.   Loved ones have begun speaking to us as though resolution is certain and asking how we feel.  Quite frankly, we were so devistated by her hip's redislocation in July that we cannot allow ourselves to feel quite as certain as others do.  We call it "cautiously optimistic."  

At the same time, we are encouraged to be counting down and have begun allowing little hopes and dreams to seep in... wishes for what life can be for Hip Chick and our family.  And so we wait- we will know more after we bid this cast farewell.  Meanwhile, it sure is a great time of year for miracles and dreams to come true.

Top Ten Reasons to Take Your Spica Kid Trick-or-Treating

10.  After all the extra time at home, Mommy needs a workout!  Nothing builds biceps and calves like pushing wheelchairs up inclined sidewalks and lifting them up steps.

9.  Two words: Block Party!

8.  It's the one day of the year that other kids are dressed more outrageously than yours.

7.  Spica kids often miss and/or are overlooked for play dates and birthday parties.  This is one event they can participate with or around other children.

6.  Nothing lifts spirits like a little dress up and make believe.  Spica kids need escapism, too!

5.  Winter is coming- take the opportunity to get out of the house now!

4.  After all of the stress, Mommy and Daddy could use a little fantasy and escapism of their own.

3.  The wheelchair provides a wider base of support for trick-or-treat bags... this is the year to go jumbo!

2.  After repeated medical procedures, spica kids aren't scared of jack-o-laterns and witches.  Bring on the ghosts!

1.  Life's too short to miss out on free candy!