Bringing Down the House

All parents believe their children are show stoppers.  But our Hip Chick literally brought down the house yesterday.  She was so determined to escape that she flipped onto her stomach and "army crawled" away from the traction unit until it crashed down.  (We have added extra stabilizing measures to prevent a repeat occurrence.)  I simply cannot imagine where she could have inherited such strong will...

In other news, I was pleased to see my vision realized for the lap desk I had purchased (photo, above).  Two strips of double-sided tape, two sheets of drawing paper, and a box of crayons was all she needed for a little art distraction. Speaking of distractions, I would like to dedicate the success of the last two days to the following "sponsors;"

This super-sparkly lap desk has already paid for itself 50 times over.  It deserves several extra nods.  I just may be jealous enough to purchase an extra one for myself.

Crayola Color Wonder products.  Lackluster photo, spectacular products.  Just today, you spared skin, clothing, couch, blanket...

Sticker books.  Namely, the Hello Kitty sticker book pictured above.  I did not know that Hello Kitty played soccer.  Nor did I know she had an art class.  All that matters is the sheets of stickers we continue to have on reserve after four days of diffusing meltdowns.

Our hippie loves loves books.  This new addition has officially made her top 5 rotation. 

I had always admired the Melissa & Doug line, but the gear toy above is snazzy.  It did not take much direction for our hippie to begin matching colors and tinkering with the mechanics.  A big nod to the manufacturer for the double-sided stencils.

Meanwhile, this is the latest evolution of our hippie's traction space, below.  We have now connected the Tinkerbell couch and traction mat by wrapping them together in cloth to provide extra lounge space.  If I were to propose one improvement to the traction process, it would be to provide larger mats for older/more active tots.  We could easily add a third, same-sized mat to match her activity level.  Her ability to maneuver is impressive.  I have told my husband that, should our Hip Chick embark upon a career with Cirque du Soleil, we would have to reflect upon this period in her life.

Traction- Day/Night 2

I do not expect to blog every day, but these first two have been a high learning curve and I thought to share another update.  First, the photo above was specifically requested by our Hip Chick.  She held the monkey up and said, "Mommy, cheeeeeeeese!"  (Mommmy has been a shutterbug...)

Our hippie seemed to have a better day today than yesterday.  She still hit some rough patches, but nothing was as full as last night.  She was rather content with Animal Planet, Bubble Guppies, Yo Gabba Gabba, or Mickey Mouse Clubhouse on tv.  We also entertained her with electronic games, storybooks, and stickers.  She must remain upright for 30 minutes after meals, so these specific times are quickly becoming treasured reprieves.  She still is not supposed to move or walk (and she complies 90% of the time), but these times are exciting opportunities for coloring, more reading, and interactive toys.

We knocked out her first sponge bath today.  For obvious reasons, there will be no photos posted.  She did not seem to enjoy this experience.  We wrapped her legs with trash bags.  Then, we began a small stream of water- just enough to flow directly down the drain.  We created an extra water barrier with a rolled up towel in the event we miscalculated the water flow.  Then, we placed her on the opposite side of the towel from the tub faucet.  We wiped her down to the best of our ability, then laid her head onto the towel to wash her hair.  This part caused a bit of panic.  Once we finished rinsing her hair, she adamantly told us, "Wawa all done."  Still, it was an achievement for us- as mentioned in a few prior posts, she will have sponge baths for roughly six months.  At this juncture, the hair washing seems to be best kept as a two person job. 

Below are a few of her creative positions in spite of the traction unit:

Watching TV

Napping

Using her new stuffed bunny as a pillow.  Do we see a smile?

As with last night, she did not fuss when it was time to sleep in her traction unit.  Other than one pronouncement of "STUCK" (which we quickly remedied), she rolled onto her stomach and has been sleeping as well as usual.  Mommy and Daddy on the other hand- perhaps we sleep a little less than usual these days.  Her nurses mentioned that most parents of children in this program feel as though they revert to a newborn sleep schedule.

Speaking of schedules, tomorrow my husband and I begin alternating days at home/work and caring for her by ourselves during the workday.  (Hence my midnight blog, as I worked at home until that time tonight.)  Tomorrow is his day at home and mine at work, although we will each do our best to remain active/available for our employers on the days at home.  It will be interesting to see how we each manage this next phase of our transition.

Traction- Night 1

Yesterday evening was rougher than the day.  She reached an emotional break, and pled to be pulled out.  She fought enough to kick one of her legs free, so my husband pulled her out for a 15 minute break.  After we placed her back in, she continued to struggle.  We cuddled her, sung to her, but nothing seemed to work until I offered mac & cheese for dinner- that instantly lifted her spirits.

The monkey above is her new favorite friend.  Our princess received it a few years ago and I immediately thought of it when we arrived home yesterday.  Our Hip Chick smiled and giggled when I told her that he hangs from his feet- just like her.  

Before the sun set last night, we decided to give her wagon a whirl around our neighborhood.  Her nurses advised that it would be good for her mental disposition to have a trip outside once per day- weather permitting.  So, we bundled her (and the monkey) up with blankets.  (On a lighter note- yes, this wagon is considered a piece of medical equipment.  Your Scottish Rite donations at work- thank you!)

Halfway through our walk, she managed to flip onto her stomach.  This may look uncomfortable, but she was thrilled.  She kept yelling, "Hi, Mommy!  Hi Daddy!" because she was so proud. 

Our little hippie has to sleep in the traction unit, and it fits into her crib.  Scottish Rite provided us with a white mat to use with the unit.  Our Tinkerbell fold out couch offers our Hip Chick more space during the day, but we need the mat for nighttime because the traction unit does not fit underneath her crib mattress..  I stuffed the empty spaces between her mat and the crib slats with all of her blankets and quilts. When she was born, we received so many blankets that I wondered how we would make good use of them all.  It took every last one of them to achieve this arrangement.

We were mentally prepared for a long night.  Much to our surprise, she did not fight me when I hung her legs and told her goodnight.  We have a video monitor and could see her jostle her legs a little (perhaps to the radio- we have it play for her at night), but she slept peacefully and soundly.  Only once did I hear her fuss- it was near 4am and she needed help finding her beloved pacifier.

This morning, we awoke to her trademark, "Mooooooom-myyyyyyyy" yell from her crib.  As I rose, I was in disbelief to hear her cooing.  Dare I say it, she sounded happy.  I shuffled into her room to see my bubbly girl, flipped onto her stomach (as she prefers to sleep).  Due to the weight of the sandbags, her legs and hip were elevated.  I immediately thought of Tom Cruise in Mission Impossible.  She seemed thrilled and comfortable with her achievement- much like the wagon. 

This morning, we seem to have found a more comfortable position for her.  She has struggled some, but not nearly with the depth of last night's break.  I think it will become easier with each day.

Traction- Day 1

Our Hip Chick began traction early this morning.  At breakfast, I showed her the photo (that I mentioned in my previous post) again.  I  reinforced that her legs would look like the little girl's leg's today.

The appointment itself was much quicker than anticipated.  She struggled and cried a little at first, but she adjusted much quicker than we expected.  It was more difficult holding her down for xrays than for her taping.  She was rather quiet during her test drive through Scottish Rite in her Radio Flyer wagon.  Her nurses remarked several times that she transitioned well.  They advised that it is common for children her age to howl and cry during their first spin in the wagon.

I do not wish to present a false image here- she did beg "up, please" several times, tell her new "socks" (as we are calling them) bye-bye, and struggle with us upon first arriving home.  But who wouldn't?  And when I left the room to warm her lunch, I returned to discover her flipped onto her stomach, trying to devise her escape.  She has attempted several "alligator rolls" to flip out of the unit.  

Considering it all, however, we are proud of how she handled this today.  Perhaps those discussions with the photograph made some sense after all.

We did agree to participate in the traction research study.  Data will be collected regarding her treatment and growth until she is at least 16 or 17 years of age.  There will be approximately 200 children in the study  (under age two at onset of traction).  We are honored that her treatment can contribute to the development of concrete data to treat other young children like her.

In regard to the actual device and treatment, a few notes:

The weights are sandbags.  Her nurses had lighter bags ready upon our arrival, but quickly pulled these.  We were given additional weight to add in the event these prove to be too light.  Our hippie will use heavier weight than this after her check up next week.  Our nurses explained that she will be able to remove her good leg/hip from traction if all looks good at the appointment, but that also means she will have greater leverage against the traction unit. Hence, the need for greater weight.



The photo above is of a monitoring unit.  There is one attached to each of her cables.  They will record how much time she spends in traction, per half hour increments.  Our firm goal is 22 hrs/day. 

Her outer bandages can be changed at home, but the medical staff are also happy to do it for us.  They will change them at her appointment next week and then leave it to our discretion as to who will change them between the appointment and the surgery date.  They stirrup tape may also be changed at these times.

Speaking of surgeries, it was further clarified to us today that there is a possibility her closed reduction could become an open reduction on the March 25th surgery date if traction does not have the desired outcome.  More on that to come, however.  For today, we are focusing on the immediate task at hand.

It Is Time

This weekend concluded our preparations.  In addition to the basic details (paperwork completed, bags packed, house cleaned), we treated our Hip Chick to two pancake breakfasts out.  My husband fired up the grill last night and, in our daughter's words, made "BIIIIIIG burbers!"  Today, we took her to both the dog park and a playground.  She swung and slid to her heart's content.  This weekend, she enjoyed a collection of extra long, splashy baths- during which we allowed her to soak us and the entire bathroom until every last drop of water had drained from her tub.  The photo above is of her wrinkled little feet and toes after her bath tonight- the last one for approximately six months.

In attempt to somehow explain to her what would occur in the morning, I showed her a picture of a toddler in Bryant's Traction several times today.  Due to her age, I did not think she would grasp any attempt to explain earlier than this. You can see the same photo via the link here:  https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLSofiEgv_2kwR2fM6_l86CQJ7vUX5Cm9xSPowE5JHxaUPEjFVipY8AtlAWCtNGZNIoq6mwXPnmqlHeotV7J7AxzNbSWIk3iIiVxhXaLSvARLER8zca9n-xDcJo-OXSuq0H7PB_NT-R08/s1600/IMG_0783.jpg

Each time I would show her the photo, I would point to the little girl's legs, then tap hers.  I kept saying that she would have the same legs tomorrow.  I also had her lay down on the floor, pull her legs up, and look at the photo.  I can't say with certainty that she understood, but she did point to the toddler's legs and say her own name a couple of times.  Perhaps in some way the message reached her.  If so, I hope that little part of her thinks back to our conversations today when she sees us taping her legs and hanging them.  I hope she knows that Mommy tried to tell her.

Game faces on- it is time.

Bryant's Traction 101

With our Hip Chick beginning Bryant's Traction in four days, it is good timing to relay additional detail about this first leg of her process.  For our daughter, hip dysplasia means that her left hip is fully dislocated.  Her hip socket developed more like a "slope" than a "cup" and so there is no place to securely hold the femur in place.  Because of this, the ball joint never developed.  What holds her hip together is a collection of overdeveloped muscles, tendons, and ligaments.  She looks like she has a gymnast's quads and gluts.  She is remarkably swift for a child who has no good reason for her left leg to be mobile.

In order to make the next phase of her treatment more successful, traction is the first step.  The overdeveloped musculature needs to be stretched and softened.  Ideally, this process will allow the femur to begin pulling back toward the "socket."  On her surgery date, they will have to operate on the musculature in her groin area to fully release the femur to be reset.  By doing the traction first, they aim to make this process safer and more successful.  Her clinical team also explained that during this process, however long/invasive it must become, it is paramount that the integrity of her hip's circulation and blood flow remain in tact.  Should this be disturbed, risks range from early onset of arthritic conditions to, in extreme cases, destruction of bone due to lack of blood supply..  Traction is also supposed to help her medical team maintain the circulation.

Scottish Rite has explained to us that the use of traction is technically considered experimental.  The hard data regarding its use is still being developed.  Should we wish to contribute (which we will), we can provide additional photos and documentation to aid in the research process.  Currently, it is their theory that traction is most effective if compliance is achieved between 50% and 100%, save meals and sponge baths.  Our goal is to keep her in traction 24 hrs/day, except for those times.

The traction device is comprised of a light colored PVC pipe.  The weights will be attached to her leg via a pulley system.  She will have surgical grade tape on her legs, which will be wrapped with an outer layer of ACE bandages.  The tape cannot get wet.  So, once she is taped on Monday, she will not have a bath until her spica cast is removed- no baths (save careful sponge baths) for approx. six months. 

The traction device is supposed to be somewhat mobile; we can move it from her crib to different rooms in the house.  We will also be provided with a wagon (think Radio Flyer meets Doogie Howser) with which we can pull her around the house or, if we feel spunky, public settings. 

It is difficult to fully envision this for our hippie in my mind's eye, even with the aid of photographs.  We will see for ourselves soon enough.

Community Support

"Just remember, everything will be ok.  It will be overwith before you know it!  It will not steal your daughter's happiness- stay strong."  It was our assigned peer mentor, Carrie, from Scottish Rite.  I contacted her one week prior to our Hip Chick's traction date, to soak up any advice she had regarding the process.  We have been in close contact leading up to the big day.

Carrie has been very positive, helpful, and supportive.  She forwarded me photos of her daughter in traction and in the spica cast.  She provided tips regarding the general traction process and spica cast maintenance.  She has offered to give us the equipment she used for her daughter, to help us save money.  She is already our cheerleader and likely to be the most upbeat and certain of our outcome than out of anyone we know.

There is one key difference regarding our daughters which make me curious as to what our hippie's personal experience will be.  Carrie's daughter was quite a bit younger than ours when her process began and ended.  I question whether our 21 month old's age/awareness will add a layer of emotional complication to our process.  Regardless, I am grateful for the chipper assistance and camaraderie.  It is helpful to feel less alone. 

Princesses and Hippies

Our Hip Chick's big sister was recently over for her weekend time.  She is my husband's firstborn and my bonus daughter- and completes our family when at our home.  She has always been our "pink princess," but seems grown up these days, with her schooling and dance activities.

This weekend's visit is a good opportunity to touch upon how this experience can affect siblings.  It seemed much easier to prepare her for our hippie's arrival.  "Big Sister in Training" tshirts, sibling classes at our hospital, and shopping trips were significantly cheerier than preparations for traction, surgery, and casting.  She understands, for the most part, what will occur and why- but we feel it is easy for any sibling to feel lost in the process.  Relatives and friends have offered extra playdates and activities.   Some have given our princess gifts, since our hippie has received some extra traction distractions.  My husband and I pledged to not let her feel misplaced in the process.  Candidly speaking, outings with our princess will be welcome breaks from our home confinement in the coming months.

The two girls hold a precious bond.  The photos above and below are of them exploring exhibits together at a local museum this weekend.  Their relationship will change over the next six months, but I expect that it will strengthen them.  Here's to a grand future of harmony and cooperation between them.

Prescriptions and Vitamins

Baby girl has developed an ear infection.  Usually, these kinds of health issues would be a minor affair.  With an impending surgery, however, we have learned that different rules apply for a child the age of our hippie.  Her anesthesiologist is rather clear in that she is not to have a serious cough (no RSV, bronchitis, croup) for six weeks prior to the surgery, nor can she consume antibiotics for four weeks prior.  We are also limited in the use of pain relievers/fever reducers.  It has worked out so that she will finish her ten day course of antibiotics just in time to meet her requirements.  And we took extra care to ensure the pediatrician proclaimed her lungs to be clear.

In my previous post, I relayed disappointment with her schedule change.  With her ear infection, however, we would have been forced to push it back a week, anyway.  She was simply not meant to have surgery on the original date.

Speaking of medicines and such:  Typically, our Hip Chick does not take a multivitamin.  Our pediatrician advises that most young children have no need for one, as long as they eat a well rounded diet- and our hippie is a very good eater.  With the increased attention on her health, however, we have been advised to add one to her daily regimen.  Options for children under 2 are rather limited, so I opted for a liquid multi from Enfamil.  I expect that a multivitamin will be a part of her regimen for some time, with a 22 week plan In place for the best case scenario.   She will transition to a gummy vitamin after her second birthday.

I also explored other options (such as echinacea) to aid her immunity, but they are equally as limited as with vitamins.  In the meantime, I am indulging any fruit craving she has to add extra vitamin C to her intake.

Policies and Schedules

I received a call from our pediatrician today.  After a long discussion, to include a rehash of my pregnancy and our daughter's gross motor development, the pediatrician relayed that our Hip Chick's diagnoses has caused such a stir within her practice that their policy regarding such orthopaedic issues has changed. Going forward, all infants/toddlers with a limp or uneven gait will be screened for hip dysplasia via xray upon first notice, to aid in the earliest intervention possible.  This will be regardless of presence/absence of risk factors or audible hip clicks.  I told her that our family would be honored if this new protocol helped another child- a mitzvah from our family to another, whom we may never meet.

In other news: due to a scheduling conflict on behalf of our surgeon (against her closed reduction date next month), our daughter's entire schedule has shifted back a week.  I am not a clinician, but I do work in the healthcare industry and understand these sorts of issues are common. As a parent, however, it is disappointing news.  To clear the mental hurdle of acceptance for her condition and treatment, and then to coordinate with employers and daycare, only to extend the wait... not the call we wanted to receive.  I am growing more spiritual and superstitious, however, regarding such things... perhaps this is a sign that we are not as ready as we thought.

Traction Entertainment

"Exactly how does one restrain entertain a strong-willed and active toddler for four weeks of traction?"  This was one of the first questions to pop into our minds once the treatment plan was established.  By default, all toddlers are active and defiant, but when you envision yours under four weeks of captivity, it feels as though your own child will surpass all children who set precedent for this treatment and be certain to destroy that pvc pipe contraption in one tantrum.  (Yes, you read that correctly- the traction device is made of pvc pipe.)  Eight days prior to placing our hippie into traction, I embarked upon a shopping trip with a singular purpose: To discover means of ensuring one month of our sanity her happiness.

Inspired by our zoo adventure, I could not resist the Jambo-ree giraffe maracas pictured above.  I also purchased Jambo-ree's "parum pum pum" percussion set, to include a drum, tambourine, and jingle bells (all at Target).  As much as our hippie loves music, I wonder whether "upside-down music time" could become a new household routine.   I envision opportunity for her to beat her frustration into a drum or shake it out via maracas.  Crayola has a clever Color Wonder line of products, for which the marker, fingerpaint, etc. only works on special Crayola paper (as opposed to furniture, flooring, clothing).  A few of these treasures also found their way into my basket, as well as a couple of standard coloring books and extra crayons.

Our local Learning Express store has a plethora of creative toys and is often a favorite shop for birthday gift purchases.  I found a large, sparkly, padded lap desk to prop up and a Tots Art Start Kit.  I plan to tape construction paper, paper plates, etc to the lap desk so she can still scribble, stamp, or glue while laying down.  Usborne "First Sticker Books" also looked to be a creative, interactive option.  I purchased several.

Fortunately, our Hip Chick is heavily addicted to storytime and we have a public library within a very brief driving distance.  We also have a Kindle loaded with toddler games and a couple of educational, interactive electronic toys, such as this English/Spanish alphabet board my husband purchased by Kid Connection.  Rumor has it that additional contributions to our entertainment reserves are on their way, so I am hopeful that we will have plenty of options to keep her mind active.  If all else fails, we are unopposed to a little extra Yo Gabba Gabba, Mickey Mouse Clubhouse, or Bubble Guppies for the time being.

There's a cliche regarding "best laid plans," but we hope we squirreled away enough activity for her.  At least for the first week!

Penguin Days

Nine days prior to placing her into traction, we opted to treat our Hip Chick to an outing at the Dallas Zoo.  Due to the time of year, they offer "penguin days" discounts, but we would have made the trip regardless.  Our little one is intrigued by creatures of all kinds and so we allowed her to walk to her heart's content, encountering whatever she wished.

There were many highlights for our budding zoologist: lemurs, gibbons, a chameleon, birds of prey, and all cats... but the pinnacle of her adventure was feeding a giraffe:

 Despite the brisk February air, we cherished this time with her and the time outside.  We hope that, in some way, this memory will make the weeks ahead a smidge easier.




 

Beginnings

Developmental Hip Dysplasia.  We received the diagnosis from our pediatrician on January 25th.  Not 10 minutes later, we received a call from the Texas Scottish Rite Hospital for Children to schedule an initial meeting with our daughter's assigned orthopaedic surgeon.  Yes, life changes that fast.

The past couple of weeks have been a whirlwind of information, coordination, tears, and hope.  During this time, I stumbled upon numerous blogs penned by parents who seemed much like us at the onset: shocked, confused, lost- and seeking answers.  Reading their experiences made me feel a little less alone, and so I hope this benefits another "hip chick's" parent someday. 

As DDH is uncommon (1 in 1,000 live births) many parents find it helpful to share risk factors.  In our case, our child fits the birth order (my first), gender, and ethnic requirements.  She was not born in a breech position, but was breeched until the third trimester.  Because she was not in breech position at birth, an ultrasound was not performed in early infancy.  My husband and I have no known incidents of DDH in our families.  Signs first became visible to the naked eye once she began walking at 14 months- she always hobbled and we affectionately joked that she had a "pirate walk."  Our pediatrician advised multiple times that her limp was simply to be monitored, but once her limp also gave way to a hip click, x-rays were ordered... and here we are.

Our busy, bouncy, boisterous 20 month old daughter's plan of care was nailed down today:

• Four weeks of Bryant's Traction.  (Traction?!  Have you SEEN her activity level?)  Ideally, this will be 24 hours/day, outside of meals and sponge baths.

• Closed reduction with accompanying groin surgery

• Spica cast- 18 weeks

• Recasting under anesthesia every six weeks

• Possible open reduction surgery scheduled during casting period if progress is not made

In total, it could be six months before our little hippie has the opportunity to walk again.  That is the most heartbreaking aspect of the road she is about to face.   

We are very fortunate in the kindness, generosity, and support we have received.  Our employers are allowing us to rotate a "work at home" schedule during her traction.  Her daycare personnel have outdone themselves and offered to do everything within their power to care for her once casted, to help her maintain a sense of normalcy.  To aid the transition, we are giving the daycare a spica chair- if you have not yet checked out IvyRose Spica Chairs, take a moment to see how one woman has made something beautiful out of immobility.  We are fortunate enough to live within a brief driving distance of one of the top five pediatric orthopaedic specialty hospitals in the country.  Friends, family, and coworkers have showered us with encouragement.

Her treatment begins in 11 days.  We don't want this experience to change her bubbly personality, so as the clock ticks down, we are seeking cheery ways to reinvent her surroundings over the next six months.  Challenge, accepted!