Good Fortune

Hip Chick enjoyed her first fortune cookie tonight and this was her fortune.  May it be so!  Recasting and diagnostics in six days.

Here Comes the Sun

With beautiful weather and a happier Hip Chick, we spent this morning at our local arboretum.  We thought she would enjoy extra time outside and a scenic landscape.  One can't help humming a cheery tune at such times and several about sunshine come to mind, including a classic quoted on one of the gardens' markers:

The lyrics of John Denver's Sunshine on my Shoulders are indeed lovely enough to quote (if you have never read the lyrics, you should), but I held a different tune in mind today.

On our wedding day, I walked the aisle to Here Comes the Sun by the Beatles.  We "hired" a band of talented high school students to provide our ceremony music and those special youth donated every dollar we paid them to St. Jude Children's Research Hospital.  We selected them because we wanted to honor our wedding with a mitzvah, and we could think of no better cause than children with a medically debilitating condition.  

Our little hippie was born nine months after our wedding and the song seems to apply more to her now.  It is a fitting theme song for any "hip" kid, as many do spend years in surgeries and casts, with worried parents hoping for sunnier days.  Below are the images which swept my mind today.  I won't quote the song verbatim, but enough to represent my thoughts:

Little darling, it's been a long, cold lonely winter...

(Traction, day one)

(Ready for surgery)

(Afternoon, the day of her surgery.)

Little darling, it feels like years since it's been here...

(Three weeks prior to traction)

(Gymnastics class, one month before a second opinion led to her diagnosis.  We enrolled her due to the first opinion that she had a minor limb length difference and needed help with coordination.)

Here comes the sun and I say, it's all right.

Little darling, the smiles returning to the faces...

(Daddy-daughter yogurt break during traction.)

(Mommy-daughter lunch date one month post surgery.)

(Playing with our favorite magnets in our spica cast, a new way.)

Little darling, it feels like years since it's been here...

(Daddy-daughter hockey date, two weeks prior to diagnosis.)

(Swinging, the day before she began traction.)

Here comes the sun and I say, it's all right.

Little darling, I feel the ice is slowly melting...

(Koi pond, today.)

(Koi pond, today.)

(Frog statue, at arboretum today.)

Little darling, it feels like years since it's been clear...

(Zoo, two weeks before traction.)

(Music lab at a local museum, three weeks prior to traction.)

Here comes the sun and I say, it's all right.

Sun, sun, sun, here it comes

(Pioneer house exhibit, today.)

...and I say, it's all right.

Swinging in Hammocks and Searching for Airplanes

What a difference a day or two makes!  As indicated in my prior post, our little hippie recently hit a rough patch.  Even her daycare had remarked on her disposition.  After a frustrating couple of days at daycare and a volitile week at home, she seemed to turn the corner Friday.  Her teachers relayed a chipper report at pick up and she has been bubbly all weekend.  

Last night, we accepted an invitation to a friend's backyard cookout.  After last weekend's ballpark experience, we were holding our breath for a better outcome.  Fortunately for us, Hip Chick was quickly taken by a large hammock, as pictured above.  

The evening brought us more cheer and laughter than we had experienced in weeks.  Grilled food, basketball fun, and good friends helped Mommy, Daddy, and Hip Chick relax.  (Admittedly, this is no small feat, as Mommy is a bit tightly wound these days.)

Near our evening's end, she requested a return to the hammock, so Mommy pulled out a book from our bag.  Inspired by festive string lights in the surrounding trees, I selected our Twinkle Twinkle Little Star book.  After we sung to the star with all the animals around the world, Hip Chick ended her evening by searching for real airplanes and stars with a very animated and enthusiastic "auntie."

The photo above was of another fun experience earlier in the day.  She has been army crawling anywhere she can in the house and yesterday morning she decided to visit her alphabet magnets on our fridge.  As we are constantly looking for new answers to the question, "How to entertain a child in a spica cast?" we let her explore new ways to do old things.  She played with her magnets for a good bit of time.  Hammocks and magnets are two great activities that we added to the list!

60 Days Down...

It is an important day!  Today marks the end of our daughter's first 30 days in her cast and her first 60 days of lost mobility.  Today also marks a one month countdown to her second birthday.  One month...

  Some people sacrifice their hunger for a religious holiday- a single day.  Others, select a habit or indulgence to sacrifice for 40 days.  These sacrifices make some people moody, cranky, or unpleasant to be around.  What would you do after 30 days of being crippled?  60 days of lost mobility?  

I ask because the "novelty" (if this term is remotely appropriate) of life in a spica cast is wearing thin for Hip Chick and so is her patience.  We had hoped this could be limited to familial interactions, but we received our first indication that this has expanded to daycare today.  Her teachers relayed signs of frustration that she cannot do all that the other kids can.  

I have felt that my mother's bag of resourceful tricks has become shallow as of late.  Without many creative ideas clammoring for introduction, I thought that perhaps she would find solace in extra one-on-one time with Mommy.  I pulled a few favored books tonight for storytime.  We solved some puzzles together.  We cuddled and watched a favorite cartoon.  Ultimately, I realize that much of our daughter's outcome will depend on her personal coping abilities.  I hope that a calming presence by Mommy and Daddy will help to settle her angst.

Meanwhile, she has seven days left in daycare until her next OR date.  Perhaps being out for a couple of days will help refresh her outlook.  For now, we continue to search for opportunities to take her out into public for new experiences.  We hope that her young coping mechanisms aid her until her upcoming OR appointment.

(Don't) Take Me Out to the Ballgame

Today, we took Big Sis and Hip Chick to a major league baseball game.  A dear friend was celebrating a special day and we had a very generous opportunity for air conditioned seats and access to tidy bathrooms. What a fabulous way for us four to spend the day together, with friends, and enjoy some much-needed time away from the house!

It was a beautiful, sunny day.  Birds were chirping, bats were cracking, crowds were roaring... and Hip Chick was as volitle as a Texas tornado.  I wish I could post a plethora of happy photos, but our experience is best summarized by this:

We had high hopes for a better outcome, but this weekend's ear infection, diaper leak (see the prior two posts), and erratic sleep schedule were likely contributors.  I was disappointed and perhaps a smidge embarrassed- we need socialization so badly!  Perhaps we just need to retool our approach to big outings.

On a brighter note, our portable booster fits into our stroller!  YEAH!!  This opens many more opportunities for outings over the next 14 weeks of casting, pending disposition.  Where shall we go next?

Diaper Leak

Well, it happened... our first diaper leak in the spica cast.  With an 18 week casting assignment, I suppose it was inevitable.  Today marks the end of her fourth week in the cast and so we cannot complain too loudly about one month without incident.

How did it happen?  We are scratching our heads a bit on this one.  By the apparent freahness of the leak, it appears that she awoke us with crying as soon as it occurred.  We were shocked to see the leak was through the top of her cast.  We immediately pulled off her soiled nightgown and changed her diaper.  Oddly, it was not the fullest diaper I have seen.  

With her laying on her back, I was able to use baby wipes to clean her skin from the chest opening down into the cast and all the way to her diapering area.  She has lost some girth over the past few weeks and I was pleased with the roominess this afforded me for cleaning.  I did this multiple times, to also wipe the cast liner.  The remaining concern was the fuzzy liner at the top of the cast opening, at her chest.  I wiped it to the best of my ability, but remain skeptical.  Depending on the day's progression, I may take a toothbrush and dab of baking soda to that area.

Meanwhile, Mommy brewed a cup of coffee.  Pardon the dark photo, but it's an early day in the Hip Chick household!

Addendum:

I did not need to attempt the baking soda, as our cleaning methodology worked.  I did smear a very small amount of antibacterial hand gel on the fuzzy liner, at the chest opening where the urine leaked out.  I also took a barely damp cloth which had a little lavender scented baby wash rubbed into it and wiped all of her exposed chest, arm, and neck areas.  I followed with baby wipes again.  So far, she does not seem to smell.  Hopefully this will still be the case as the weather warms.

Cheeseburger in Paradise

Another "first" is achieved!  Today, I treated Hip Chick to a mommy-daughter lunch out.  While I have successfully carried her to daycare or drive-thru type errands on my own, I had not yet braved a restaurant by myself.  But I decided that, if she can drag herself across a playground to reach a play house on her own (as in my last post), Mommy can certainly conquer a restaurant experience on her own.

I selected a local Mooyah and timed our arrival for around 11:15am, to ensure we beat the lunch rush.  As hoped, the restaurant was nearly empty and we snagged the table nearest to their chalkboard.  I needed to quickly drop off her portable booster due to my limited arm capacity.  She cannot be left alone in a restaurant chair, as she can easily tumble over and harm herself, so I needed to carry her anywhere I walked.  

I balanced her on their counter's edge, leaning against me, to place and pay for our order.  (Slightly off topic- I have a huge weakness for their veggie burgers and sweet potato fries.)  Pouring drinks was an interesting task, but it helped that she could hold her own drink during our walk to the table.  While we waited for our food, we happily scribbled and drew with chalk, as pictured above.  When our order was ready, the staff kindly delivered our order instead of making me pick it up at their counter.

A silly girl is a happy girl and we shared lots of giggles during our restaurant experience.  My prior wariness was less reflective of my independence and more a skepticism of my physical limitations.  With her weight, size, and awkward positioning, it is uneasy to carry her for lengthy periods of time and difficult to carry much more than her and my purse.  I expect that it could be easier with a younger or smaller child, but our hippie tops the growth charts for her age.  I envision that a restaurant with wait service could be easier, provided the food is cooked quickly enough to satisfy an impatient toddler.

In other news...

We were called to pick our hippie up from daycare around mid-day yesterday because she had populated a 101 degree fever.  Her classmates had fallen ill over the prior three days and so we were suspecting she would follow suit.  As it turns out, her airways were clear, but an ear infection was the culptrit.  I had great concern when antibiotics were prescribed, as she has an OR date on May 6th- barely more than two weeks from now.  For her closed reduction, we were advised that she could not take antibiotics for four weeks prior to her surgery.  What to do?

I called Scottish Rite for advice.  Would we need to ride this out?  Add three weeks to her casting timeline?  A very helpful member of our surgeon's team provided reassuring advice.  

For purposes of the recasting appointment, Scottish Rite would be concerned if the antibiotics were prescribed to treat an infection affecting her airways.  Hip Chick's anesthesiology team does not want her to take anything to mask a concern which affects her ability to breathe, as that could cause problems once the anesthesia is dosed.  Provided that Hip Chick does not worsen and provided that her ear infection is the only health issue we are treating, we were cleared to administer the antibiotic and retain her May 6th appt.  We need to follow up after the weekend to confirm the status of her health.

Hip Chick had not been ill for the past two months and this has been our first potential snag since the onset of traction, so we cannot complain.  We knew that she could catch something from her classmates eventually- one has to be reasonable about such things.  Frankly, even if we must extend her casting timeline, we will not feel too rattled.  As mentioned in my three week spica cast recap, I had received upsetting news from other "hip" mothers in a support group I recently joined.  The girls whose hips redislocated had casting assignments ranging from six to 12 weeks, whereas our daughter will be casted for 18.  If extended casting helps Hip Chick's hip to take, we will be perfectly happy to keep her in one a little longer.

Get Up, Stand Up

Two nights ago, we were drawn to Hip Chick's video monitor due to exclamations of, "Hi, Mommy!  Hi, Daddy!"  The image we discovered prompted us both to rush her room.  Our hippie had finally built enough arm strength to pull herself into a standing position via her crib slats and was surveying the landscape for an escape route. I had terrible visions of her falling backwards and incurring a concussion, but she was obviously too thrilled with her achievement for such concerns.  I am confident that she would have managed a prison break by now, had she not been inhibited by a heavy spica cast.

Her latest feats of mobility have not been limited to just her crib.  Her daycare teachers relayed a story this week which features even more determination.  As it was told, her class was playing outside and her teachers had made a palette to the side of the playground for her.  Hip Chick began to army crawl away from her spot and her teacher asked where she was going.  "House," she replied and looked over at the toddlers' play house.  She then proceeded to army crawl across the play area and entered the house.  She stretched to reach and grab its windowsill, pulled herself to a standing position, looked out the window, and excitedly shouted to her class.

Tonight, she repeated her same trick in her crib and I managed to snap a photo (above).  She is so driven and brave.  Will anything stop her?  While the thought of honing this aspect of her personality during her teenage years draws a slight sweat, I can't help but admire her refusal to allow this cast to inhibit her.  

Spica Cast- 3 Week Recap

Our daughter has reached reached the midpoint for her first spica cast- hooray!  We make a point to celebrate each milestone and this is certainly worth cheering about. Below are some of our recent thoughts:

1.  So far, things seem upbeat.  Does this mean we can breathe a sigh of relief?

Hip Chick's outlook continues to be encouraging, so we are working on a transition to a more "normal" routine.  This will be our focus until her next OR date, in three weeks.  This is not so much relief, but more hope and continued positivity.  We are encouraged that the big hurdles have incurred positive results so far.

2. Now that Hip Chick has a few full days of daycare under her belt, how is the transition back?

So far, things are going well- better than we expected, actually.  Especially the diapering- not a single miss thus far!  

Before she was born, we selected our daycare because it was highly recommended and they have not disappointed in their quality of care to date.  Some people have responded to our decision to return her to daycare with surprise, if not judgement.  With the daycare's overwhelming support, we feel that it is important to continue socializing her and to feed her cognitive development.  We also believe it is important that she be allowed to experience her usual routine, as that nourishes the soul.  Lastly, between home and her daycare, she is surrounded by people who love her and don't treat her condition as something to be ashamed of, limited by, or afraid of.  You cannot place a price on such things.

3. Daycare aside, how have other outings gone?

Our daughter has done well with our recent outings.  Outings are tougher on Mommy and Daddy than her, as we are still developing routines.  As long as we bring our portable booster, restaurant excurions are successful.  In the photo above, she is cheering Big Sis at a soccer game, sitting in her wagon.  Last night, we visited another home for the first time and had success using her rocking bee.

Outings can draw marked reactions from strangers.  We have seen gasps, shudders, and stares.  Our daughter is too young to notice, so we pretend we don't notice, either. 

4. How has she transitioned into life with a spica cast?

She seems to be doing well.  She is still frustrated with her inability to walk, but she is finding her own work-arounds.

5. Does she have any ability to move independently?

She sure does!  At the soccer game, she begged to lay on the ground.  As soon as we placed her there, she attempted to claw and army crawl onto the field, as she was determined to join the fun.  At home, we have wood floors and she will push along the floor to play with toys- as pictured below.

6. How has Big Sis reacted to the cast?

Big Sis seems to like seeing her in the cast more than traction.  The spica desk is a rather helpful means to enable their interaction.  It is the perfect height for Big Sis to pull up a chair and share a meal or play together.

7. Have we joined any support groups or found additional peer support?

I recently joined a support group for moms of toddlers who are in the surgery or casting phase to treat DDH.  Unfortunately, it has done more to rattle my confidence than rally my positivity.  Most of the respose I received was from moms whose daughters had a successful closed reduction and casting, but the femur slipped out of socket as soon as the cast was removed.  So, after the closed reduction and spica cast, these children all had open reductions with additional surgery on the femur or pelvic bone, and some are preparing for their third surgery. All of their daughters were around the same age as mine for the closed reduction. 

The differences seem to be that none of the other girls had a traction assignment and they all seemed to have a markedly shorter casting assignment than mine.  None seem to be treated at Scottish Rite.  I hope that the differences in process and medical team will provide my daughter with a more positive outcome, but this has been a sobering bit of reality to stumble upon.

8. How have the spica desk decorations evolved?

Our deep sea wall decals recently arrived and her desk now resembles an aquarium.  We had fun decorating this morning.

9. Scottish Rite complimented her cleanliness- what have we done to evoke such a remark?

Most importantly, our diapering process works.  The fastest way to a stinky cast is leaky diapers and I was determined to start a successful path.  Also, each time I change her diaper, I gently clean as far into the cast as possible (from the diaper opening) with baby wipes.  At least twice per day, I wipe all of her exposed (non-casted) areas with baby wipes.  During these times, I also gently reach into the cast openings at her ankles, back, and chest to clean with baby wipes as well.  The duct tape at her diaper opening  continues to be one of my favored preventative measures.

10. How is her appetite in the cast?

She is and always has been a good eater at daycare.  She eats snacks and lunch at daycare.  Her breakfasts at home continue to be rather meager and she does not always eat dinner.

Hope the 'Hip' Hippo

I have stumbled upon the most adorable book!  Meet Hope, a young hippopotamus who has hip dysplasia.  In this very relatable read, she visits the doctor to learn that she has special hips, which need to be fixed.  She has xrays, goes to a children's hospital, and awakes "stuck" in her spica cast.  She receives balloons, has a special wagon to ride in, and her daddy builds a special desk for her to play in.  At the end, she is able to jump and dance again.

Our copy arrived yesterday.  Hip Chick has enjoyed flipping through the pages and talking about all the things she and Hope share in common.  Even Daddy remarked on how darling the book is.

In my search for aids to help our little hippie, I was surprised that this seems to be the singular children's book to address hip dysplasia- and its copyright is only six months old.  It was penned and self-published by two resourceful "hip" mothers who sought an answer to the lack of resources for their own daughters.  What is even more notable is that these women are from two different countries.

This leads me to remark on the overall lack of awareness about and/or experience with hip dysplasia in the general community.  Prior to our daughter's diagnosis, I had heard of only one child with a potential hip dysplasia diagnosis during my lifetime.  Neither my husband nor I had ever seen a child in a spica cast.  Many of our well meaning friends and relatives reacted to our news with the remark, "I thought only dogs have hip dysplasia."  Our daycare had not previously cared for a child with hip dysplasia.  My daughter is the first baby with hip dysplasia that my obstetrician has delivered.  As discussed in prior posts, Scottish Rite advised us that some treatment options, such as Bryant's Traction, are still experimental and medical research is still developing on the subject as a whole.

The biggest aids to help us navigate traction or spica cast care have been from either assigned peer support or resources I stumbled upon while surfing the internet- aids which were mostly resourceful moms' solutions for their own children.  This seems to be a narrow pool of support for an orthopaedic disorder which supposedly affects 1 in 1,000 children, by varying degrees.  

The International Hip Dysplasia Institute has begun to gain traction in recent years.  Some passionate parents are starting to organize walks in their communities.  Once this spica cast is behind us, I aim to contribute in some manner, whether through volunteering or by other means.

A Return to Daycare

With a successful CT in tow, Hip Chick returned to daycare for a partial day today.  I was a smidge nervous as to how she would handle the transition after six weeks of continuous one-on-one time with Mommy and Daddy.  Would she shy away from her friends?  Overwhelm her teachers with demands?  Cry as I left her behind?

We arrived just in time to greet her classmates for lunchtime.  We ensured to swing by twice last week for icebreakers, in hopes that today would not be a shock.  As soon as we walked in, her classmates greeted her with a big hello and one of her best playmates fought for a seat next to her desk.  I took this as my cue and hopped out of the room.

I successfully refrained from being a neurotic mom and neither called nor stopped in during the afternoon.  I returned to discover a happy girl and received several glowing reports from her teachers.  She did not cry upon my departure and interacted well with friends.  During their afternoon time outside, she looked at one of her teachers and said, "fun."  She apparently missed the school's tasty food as well, as she requested three helpings of the chef's yummy Unstuffed Pepper Casserole.  Her teachers earned an A+ for their spot on diapering as well.

Our happy girl, on our way home.  You also have a good view of her in the Hippo car seat Scottish Rite leant us.  This is standard equipment for young children in spica casts.

Tomorrow, she returns to daycare for full days and we return to work full time.  Here's to regaining a little normalcy in our lives... for four weeks.  Then, we return to the OR for a day surgery, new spica, new imaging, and updated expectations.

Spica Cast- CT Results and Positive Feedback

We received encouraging news today!  Scottish Rite customarily performs a CT two weeks post-op to ensure the hip remains in place.  Our hippie's imaging appointment was today.  It was previously explained to us that, while the femur could slip back out of socket at any time, it is more likely to occur within the first two weeks.  Mommy and Daddy were quite eager for today's results.

Today's CT showed that her femur remains in socket, but not fully in socket.  What does this mean?  Due to the length of time until we began treating her hip, fat and tissue had grown in the space where the head of her femur needs to rest.  Now, the head needs to push out the tissue as it approaches the socket.  Her surgeon advised that this is common and that her hip looks good enough to wait until her next OR appointment in four weeks for additional treatment.

On another note, our hippie's medical team advised that she has the freshest (best) smelling cast they have ever seen!  No sign of skin irritation or breakdown. Mommy and Daddy feel rather excited about this accomplishment as well.  We have achieved over two weeks without a single diaper leak!

One more piece of her puzzle is in place.  What to accomplish prior to her OR date in four weeks?  Next up, a return to daycare!

CT Appt... Tomorrow!

Due to a scheduling issue, we will return tomorrow morning for our daughter's CT and ortho follow-up.

Bubble Guppies Decals

They arrived... and it looks just as I had hoped! They are, indeed, reusable so little one can use her desk as a giant stickerboard.

It was the perfect opportunity to pull out her pink octopus.  She received the octopus from the Scottish Rite Radiology Dept., the day of her surgery.

Ivy Rose Spica Chairs

Our Ivy Rose Spica Chairs have arrived!  Shortly after our baby girl was diagnosed with Developmental Dysplasia of the Hip, I stumbled upon www.ivyrosespicachairs.com.  This site and spica chair concept are a resourceful mother's answer to her two daughters' journey with DDH and her desire to craft a tool to aid them. Now, she dedicates her talent to make desks for kids like our hippie.  We ordered one each for home and daycare.  The designs and intricacy this woman achieves with her craft is nothing short of remarkable.  

For our chairs, we selected a solid color for daycare and a simple design for home.  We are donating the her daycare chair to the school (in gratitude for their generous assistance) and selected a solid, light green color.  We wanted to give the school a gender neutral color which could easily be decorated to match different themes.  The home chair is a nod to her favorite show Bubble Guppies.  The desk's paint matches the show's background.  Since Ivy Rose cannot paint licensed characters, I ordered reusable decals of the show's characters.  The background will allow us to indulge her love of all things aquatic, so I will snag some decals of sea creatures; I had seen some on the Bed, Bath, and Beyond website.  This way, she can turn her desk into her own interactive aquarium.  I will post updates as we decorate.

Regarding size:  Due to the extreme width her legs are set apart and due to our hippie's potential for repeated surgeries, we selected a desk which can accommodate up to a five year old child.  

I giggle to see her tiny feet and toes dangle.

Her legs span most of the width of the desk.  You can see there is room to grow.

She is secured by a safety belt.

One side is a chalkboard, for her to scribble and draw.

The other side of the desktop has a smooth surface, for stickering...

And playing...

And eating.

We have a happy girl- and no pacifier!  Thank you, Ivy Rose Spica Chairs!