Spica Cast- Mid (2nd) Cast Recap

Our daughter has reached the midpoint for her second cast of three.  In total, she is 9.5 weeks into an approximate 19 week casting phase and 13.5 weeks into an approximate 23 week overall plan.  While we are her never ending cheering section, this second cast feels a little like the second Lord of the Rings film- the characters have plenty of fight, but the story does not seem to progress much.  Below are a few thoughts 

1. Is Hip Chick still using her spica chair?

She sure is, and quite happily.  As active as she wants to be, however, the desk is not her sole station in the house.  It continues to be a very useful tool for her to play independently in our living room

2. How is her daycare managing?

They continue to impress us with their ability to not only manage her, but enable her to experience her world as fully as possible.  They remark on how she continues to teach them, with her drive and determination to maintain pace with peers in class.  In example: The school recently had a fire drill.  Protocol is for each child to hold onto a class rope, walk outside, and keep holding until the drill concludes.  Hip Chick had every reason to gain exception, but made her teachers find a spot for her to hold.

3. Previous posts indicate that this second cast is a bit more worn than the first.  How is it holding up?

She continues to batter her cast quite a bit with her insistance to remain independently active.  I predict duct tape maintenance each two weeks.

4. Hip Chick seems to maintain a bit of spunk.  Has she attempted any new physical feats?

During a recent visit to Big Sister's other house, our little hippie eyed a flight of stairs with determination.  Big Sister's bedroom is upstairs and Hip Chick insisted on making her way to the bedroom on her own.  With Daddy a hair's breadth behind, she clawed and pulled her way up the stairs, swinging her hips back and forth with enough velocity to make her legs "crawl."  Sure enough, she made it to the top!

5. She recently celebrated her second birthday- has the casting affected her immunization schedule?

Yes, it has.  Her pediatrician opted to delay the two year checkup and Hep A vaccine until the cast is removed.  

6. Has the extensive period of casting affected her appetite?

Her teachers have recently remarked on a newly developed, erratic eating pattern.  She has also become much pickier.  She does well enough with fruit, milk, and proteins- but not so well with grains and vegetables.

7. How has the casting affected her sleeping patterns?

We can rarely tuck her in before 8:30pm these days, and sometimes a bit later.  She just doesn't seem to burn off all her energy, despite best efforts on behalf of her daycare or us.  Another issue is size.  Due to the position in which she is casted, she barely fits in her crib.  Her feet and toes catch between the crib slats when her head is positioned in a traditional fashion.  Sometimes, she shifts to afford her feet the fullest width of the crib.  Faced this direction, there is not much room for her head or the soles of her feet against the slats.  Should we face another surgery and cast after this plan concludes, we will have to place a bed mattress on the floor of her bedroom or use an air mattress.

8. Any more diaper leaks?

We are thrilled to report no diaper leaks in the second cast thus far.  In total, there has been only one diaper leak in 9.5 weeks and that was at home.  Her daycare continues to earn an A+ for cleanliness!

9. What/when is her next milestone?

Monday, June 24th is her next cast change.  As with last time, she will be under general anesthesia, so she must stay healthy until then.  During the cast change, she will have more imaging.  Depending on what they see, they plan to choose between two options for the third cast: another wide setting like the first two, or to pull her legs closer together.  For the second option, the waist could drop, but then they would cast a firm bar between her legs.  Of course, a different type of cast would warrant a reevaluation of our routines and processes.

After that appointment, we will transition our focus to preparing for life out of the cast: potential bracing, helping her regain mobility, and monitoring to see whether the hip can remain in tact without further surgery and casting.  In a best case scenario, June 24th will be her last OR date, as they remove the final cast in clinic, with no anesthesia.

Hope the 'Hip' Hippo... Website!

The authors of Hope have done it again!  This month, they pulled together a well executed, informative website to help us "hip" parents.  It includes cast care tips, a hospital checklist, links to other informative blogs, and more.  What I would have done for a website like this to help prepare for Hip Chick's surgery two months ago!  And now I pass it on to you:

www.hopethehiphippo.com

Stop by and say hello to Hope today!

Birthday Fun and Summer Kickoff

This weekend was one of big outings for Hip Chick.  As noted in prior posts, this was our daughter's birthday week, but we opted against a formal birthday party.  With Big Sis over for the long weekend, we treated the girls to lots of fun.

First up was a trip to a local aquarium on Saturday.  Our hippie was quite the water baby prior to her DDH diagnosis and we thought she would enjoy a different kind of aquatic experience for her birthday outing.  Each display drew new exclamations of, "Look, big fishies!"  She was engrossed by the stingray tank, shark walk, and tide pool.  She was thrilled to pet a living starfish.  

After the aquarium, we ate lunch at the nearby Rainforest Cafe.  This restaurant is a big hit for kids.  It was electric with buzzing crowds, simulated storms, shooting stars, and animated animals.  

She could not believe her ears the first time the elephants trumpeted!  

The tigers were also a favorite.

We indulged in souvenier cups for the girls.  This must be one of the largest souvenier cups I have ever seen.

Very successful day.  With our portable booster in tow, we were able to easily navigate the extended outing.  The only difficulty as changing her diaper.  I have previously remarked on how we gauge outings by ease of diaper changes.  Unfortunately, the only diaper changing center was very narrow and awkwardly placed adjacent to a mirror and next to a garbage can.  I pulled out a quilt and changed her on a clean area of the floor.  Regardless, it was still a very successful day.

The next day, Sunday, we received a generous invitation to a friend's fish fry.  I was nervous and needed a bit of pushing from Daddy.  We live in North Texas and the fish fry was just over the state line in Oklahoma.  I was concerned about the length of time in the car, distance from home, and the fish fry's outside location.  But I drew a deep breath and relented.  I can't wrap her in bubble wrap and force her inside forever.

The girls enjoyed a fun afternoon.  The car ride was briefer than I expected and well tolerated by our hippie.  Our Pink Princess enjoyed big girl time riding a four wheeler with the older kids.  Little one enjoyed swinging on a large bench swing in the afternoon breeze.  Food was tasty and the kids picked a couple of strawberries from our friends' garden before driving home.  We were able to change little one's diaper in our friends' house and she was able to ride in the car without needing a diaper change.  Another successful long outing in the spica cast.

We ended Memorial Day weekend with one of our riskiest outings to date... Hip Chick's first "big movie."  We were fortunate in that the arm rests for our local cinema's seats pull up, which left plenty of room for her to sit in her spica cast.  She felt grown up when we allowed her to share in the family's tub of popcorn and was very happy during the previews.  What we didn't plan for her was her overall lack of volume control.

Daddy rose and left the theater once to refill the girls' drinks.  Hip Chick seemed to think he was lost and yelled, "Oh, NO... Daddy, come here!" until his return.  When the lead character fell, she shouted, "OH NO... she BUMPA HER HEAD!!" at least a half dozen times.  A couple of outbursts later, we finally left to save our neighboring patrons' ears.  Perhaps she enjoyed the movie experience a little too much!

In total, it was a good weekend.  May our summer bring many more adventures.

Happy Birthday, Hip Chick!

Today was our little hippie's second birthday.  What a year she had!  Swim lessons, walking, first vacation... unfortunately, DDH consumed the last four months of her year.  

Due to her physical limitations, we opted against a birthday party.  It isn't that we are opposed to her having fun... we just couldn't think of a party scenario which would allow her to have as much fun as her guests.

To celebrate, we kicked off her birthday week with a bouquet of roses, as mentioned in my previous post.  I hung our festive "birthday balloon wreath," above.  Hip Chick's hip dysplasia diagnosis arrived less than a week before Big Sister's birthday this past January.  I was so distraught that I decided to channel my anger and grief into doing something productive for the family- by making this wreath.  I individually pinned over 450 balloons to make it and finally stopped due to a blister forming on my thumb.  We first used it to bring cheer to Big Sister's birthday and now it is our hippie's turn.

We surprised Hip Chick this afternoon by bringing miniature cupcakes to her class' s afternoon snack time (photo above).  When she saw us arrive and saw the butterfly theme, she flapped her arms and shouted, "Excited!!"

For her birthday gift from us, we gave her two books.  I recently stumbled across two books authored by (the late musician) Bob Marley's daughter.  Colorful and cheerful, they exuded the kind of positivity we hope she will maintain.  Daddy was especially drawn to the one about three little birds offering reassurance.

She received some exciting deliveries during the day and we ended by sharing a berry chantilly cake as a family.

Perhaps a bit grown up for such a little girl, but the cast is pushing her to mature in ways now that she would not have otherwise encountered for a long time.  She loved her cake!  

We have other plans for her this weekend, but today was most special.  Here's to the year ahead!

Schedule Change- Follow Up

We received additional clarification regarding the remaining schedule for our daughter's plan today.  The current plan is for her to spend a total of seven weeks in her current cast, which will place her next OR date on Monday, June 24th.  She will have another arthrogram on that date and the form of her next cast will depend on her imaging results.  She may be casted in the same position for a third time or she may have a cast with a lowered waist, but a t-bar between the legs.  She is projected to remain in her third cast "approximately six weeks," which places the final cast removal in early August.

She will not require an OR appointment to remove the third cast.  They will remove it in their clinic (I can only imagine how she will react to the saw) and we will discuss her post-spica plan of care.  I assume we will also perform imaging at that appointment.

So... best case scenario, she has only one more OR experience in her future.  May it be so!  If she is teetering on the fence (regarding her chances to avoid future surgery- 50%?), may she tip in favor of best chances.

Roses, Lounging, and Spica Maintenance

Happy birthday week, Hip Chick!  One of the names we gave her means "rose."  When she was born, I was infatuated with the idea of filling her room with roses for her birthdays, so I bought a bouquet today.  The vase originated with a generous gift of fresh fruit from my colleagues (after her closed reduction) and was the perfect display for the flowers.  May she enjoy them as much as I envision!

In a prior post, I mentioned that she has begun requesting to play while standing at a certain toy chest.  I snapped the pic above this afternoon.  We place oversized bean bag behind her so she can simply fall back when tired.

In another positioning adjustment, we recrecently purchased new furniture.  Our new couch has built-in recliners.  Whereas we previously lined the flooring around the old couch with bean bags, we can now pop the recliner as an extra safeguard.

Lastly, her cast required a little first aid today.  After two weeks of hard play, her ankles were as displayed above and her chest as below.

She is obviously more active in this cast than the first and Mommy will need to ensure the cast receives proper TLC to last another five weeks.  

I removed the damaged duct tape to the best of my ability (without damaging the cast) and retaped the problem areas.  I ran out of purple tape after mending the ankles and pulled out the butterfly tape from her first cast.  She was so happy to see that Mommy was giving her cast pretty butterflies!  It made her smile and giggle.  If pretty, patterned duct tape helps her feel better about the spica cast, I will buy her any tape her little heart desires.  

First Haircut and Daycare News

Hip Chick had her first haircut today!  Some may ask, "What does this have to do with hip dysplasia or spica casts?"  Plenty.

As discussed in prior posts, our little hippie cannot fit in/on high chairs, booster seats, or most standard seating.  Our portable booster is our best traveling companion, as it transforms most standard chairs into spica seats.  When we decided to take our daughter for her first haircut, this was a factor in selecting a salon.

I called a few children's salons to ask questions.  I was most disappointed in our local Sweet & Sassy boutique. Once I mentioned baby girl's spica cast and asked questions about seating, their demeanor turned and they acted a bit put out about making accommodations.  Clearly, I was not going to take her anywhere that might make her feel bad about her spica cast.  Perhaps they need to take a little "sass" out of their business model and replace with extra "sweet."

The winner was a local Cool Cuts For Kids.  When I called and began asking questions, they immediately put my mind at ease.  They advised that they had previously cut hair for a child in a spica cast.  They reassured that we would find a way to make the seating work and for her to have a good time.  Winner!

We set her for success by scheduling an early appointment and feeding her a snack along the way.  She shouted excitedly when we pulled up to the storefront and I promised she could pick out any bow she wanted.  

Portable booster success!  We were able to fasten it on top of their chair's booster cushion.  Her hairdresser, a very sweet woman, loaded Mickey Mouse Clubhouse into the dvd player as pictured at the top of the blog.  The haircut began with a sing-a-long of the show's theme song and away we went.

She did so well!  No resistance or tears.  We will return again.

Onto the daycare news...

Hip Chick's teachers had exciting news to relay at pick up yesterday!  Our little girl has begun to pull herself up and cruise along furniture, much like infants first learning to walk.  I had heard a few other "hip" moms describe their children doing this and had seen one video of a child walking (unaided) in her spica- but It usually involves children who are slightly older and/or casted in a more natural position.  I had wondered if our hippie would take it upon herself to try this and suspect she may try to walk in it before the next three months are up.  What a determined little girl!  I admire her so much.  Just what will she do next?

Schedule Change

We learned today that our little hippie's plan of care has been extended.  An extra week was tagged onto her current cast's timeframe, so she will be in this cast (her second cast of three) for seven weeks instead of six.  We will receive additional clarification next week regarding the potential timeframe for her third cast.  I suspect this means that her 22 week plan is turning into a 23 or 24 week plan.

I hope she is able to enjoy a pool at least once this summer.  She was such a water baby last year and it would be a shame for her to miss out.  Of course, this fuels the pensive side of Mommy a bit.  I keep reminding myself that she had a victory with her last OR appointment and a current victory means a future one is possible.  So... we remain hopeful.

Walk This Way

Below are a few photos of baby girl and her "walking."  She holds onto our hands and swing her legs around.  It is her favorite home activity.  If we agree to let her walk (it is quite the strain on Mommy and Daddy's decrepit backs), she flaps her arms wildly and squeals, "EXCITED!!"

Mid-Plan Milestone

Today, our daughter reached the midpoint for her 22 week traction, surgery, and spica plan to address DDH, or developmental dysplasia of the hip.  February 25th, the date we placed her into traction, feels like a lifetime ago.  As yesterday was also Mother's Day, I could not help using the photo above for this blog.  These are her precious little feet nestled in my hands as a newborn.  

I think of them and wonder where they will take her in the future.  Will she run?  Play sports?  March in a band?  We will do everything possible for these feet to carry her as far as her little heart desires.

Date Night

Recently, my husband and I went on our first date night in three months.  While this blog focuses on our daughter's DDH journey, this event was certainly worth noting.  It must be difficult for parents of any child in a special needs situation to take time for themselves. We can be thankful that our daughter's special needs have hope of resolution or, at worst, come in (long) intervals.  

Some people have seemed surprised that we allowed such a long period of time pass before a date night.  For us, Bryant's Traction was such a significant, once-in-a-lifetime event that it seemed inappropriate to go out during that time.  And we felt it best that we manage her care immediately after surgery and in her first cast between ourselves and the daycare.  As mentioned in a prior post, now is the time for us to begin letting go a little.  Big kudos to my husband for pushing me to take that first step and to my sister for taking the reigns that night.

We began our night with scrumptious burgers at a local restaurant, Hopdoddy Burger Bar.  We recently learned that Hopdoddy is donating a portion of all May sales to Scottish Rite and couldn't resist the opportunity to give back to the people who are giving so much to our daughter.  

We then drove to our local House of Blues for a long-anticipated concert.  Either luck was on our side, or our appearance screamed "brow beaten parents dressed up for a much needed night out," as we were pulled out of line by a staff member and offered entrance to their "members-only" club for a cocktail and relaxation.  Soon, we connected with old friends and enjoyed a night of music together.

I had my "slightly neurotic mom" cap on and texted a few times, but Hip Chick and her aunt had a fun night and our hippie was cooperative at bedtime.

Success!  While we do not anticipate many nights out in the near future, we hope this opens the door for a few more date nights in the coming months.  Mommy and Daddy are worn and need TLC, too.

New Spica Cast/Adjustments

This week, we learned that not all spicas are made alike.  The moleskin (fuzzy liner) which I had made such noise about disliking was omitted from Hip Chick's new cast.  Her first cast had moleskin at the ankle and chest openings.  The new cast has a soft, silkier lining at these openings.  Unfortunately (for the lining), our little hippie is very active and one day of heavy play at daycare resulted in the rips above and below.

This resulted in sharp edges, which were already nicking and irritating her skin.  What's a resourceful mom with duct tape to do?

I taped the edges with a matching color of tape.  

The tape at her chest her chest held well for the rest of the week, but her ankle is showing a little wear.

Still, this is a big improvement from the initial rip, above.  Baby girl has been restless and far more adamant about movement since her cast change and so I suspect that her ankle may see a few tape changes.

Other changes this week include diapering.  Her surgeon fulfilled his pledge to make her diaper opening larger.  This has made diapering a little easier, but we also changed diaper sizes.  She had worn a size four prior to her closed reduction and we had adjusted down to a size three for her first spica cast.  Now, we have adjusted back up to her usual size four.

Lastly, her demeanor has altered a bit.  She had a bout of frustration so deep this week that she bit herself.  She begs to stand and "walk."  My last post ended with a photo of her standing at our refrigerator to play with magnets.  Another evening, she demanded to have a snack served to her on top of a toy chest so she could stand while eating.  She stands at her toy kitchen to pretend cooking.  She often requests to stand at our kitchen window to listen for airplanes and birds.  Mommy and Daddy always remain nearby and/or place a bean bag behind her to break falls.

She "walks" by holding our hands and swinging her legs in a walking-type motion.  It wears on Mommy and Daddy's backs, but it is her favorite new trick.  She squeals and screams with delight, "Mommy, Daddy, WALKING!"

Soon, little darling.  G-d willing, you can learn to walk again in 11 weeks.

Cast Change and Arthrogram

(Painting in our day surgery "room" this morning.  Hip Chick told us the rainbow was "stuck" in the cloud.)

Today is a good day.  Hip Chick had her six week cast change and arthrogram this morning and we left with cautiously optimistic news.

We arrived an hour later than for her closed reduction and reported to Day Surgery.  Her admission was one of our easiest experiences thus far.  Our hippie was in good spirits and, to our surprise, was very amiable toward the clinical staff.  Before taking her into the OR, her surgeon stopped by to elaborate on today's agenda.  It was explained to us that if the imaging showed favorable results, they would clean her and recast her as planned.  If they saw unfavorable progress, they would leave her uncasted and schedule an open reduction surgery.

Either way, we bid the pink cast farewell...

 

As with the closed reduction, we received a pager and busied ourselves with breakfast.  (Aside: their Crayon Cafe's made-to-order omelettes are very tasty.)  We returned to Day Surgery to receive news that they were casting her, which instantly lifted our spirits.  She spent approximately 90 minutes in the OR from start to finish today and we discharged by lunchtime.

Before she returned to day surgery, her surgeon stopped by to recap.  He advised that her hip looked better than at her CT appointment four weeks ago.  The femur is in socket and there does not appear to be any fat or tissue to "clean out" of the socket, which is positive and encouraging news.  She shows promise that her femur may have the necessary contact with her socket for proper growth.  She also shows promise that her hip will remain together while casted.  Her surgeon also complimented her overall cleanliness, both her skin and cast, which made Mommy smile.

However...

We were cautioned that our daughter's age and socket (mal)formation place her on the fence as to whether her hip will remain together once her 18 weeks of casting concludes.  Once she begins walking and moving like a typical two year old, it is possible that her hip socket may still be unable to securely hold the femoral head in place.  If it fails to do so, she will have to undergo the open reduction surgery.  I asked if he determined whether her socket has begun to grow in a more correct fashion, but he advised that it is too early for that kind of progression.

In the meantime, she is casted in a similar, wide position (as before) for her new cast.  We also learned that she may be casted in the same position for her next cast.  Her surgeon explained to us that the hip is most stable in the wide position and that drawing her legs in could make the femur less likely to stay in socket.  When her third cast is removed, it is possible that she may still sleep in a Rhino Brace, which would hold her legs in a similar position as the cast.

For today, we celebrate that she discharged home in a new purple cast!  (I never thought I could be so thankful to see her in a cast.)  She does not need to return again until her next recasting in six weeks.  Six weeks without a doctor appointment?  What freedom!  Here's to what adventures those six weeks may bring.

Spica Cast- 6 Week/1st Cast Recap

She did it!  Our daughter has completed her first spica cast "trimester."  Six weeks of casting down and, G-d willing, 12 weeks remaining.  This is the third significant milestone she has reached, after traction and the closed reduction.

On Monday, she admits to Scottish Rite to remove her current cast.  This will be completed in an operating room, while under general anesthesia.  During this time, her team will complete an arthrogram- they will inject dye into her hip using a needle, then complete a series of imaging to determine her femoral head's positioning.  Should her imaging show favorable results, we can proceed with the next six weeks of casting.  For today, we continue to think positively.  

Below are our latest thoughts:

1. Bryant's Traction and spica cast care are two vastly different processes- what has been the biggest change?

We have been very grateful for the ability to reintigrate her into society.  We have managed 3 1/2 weeks of daycare, a handful of restaurant excursions, two visits to friends' houses, major league baseball game, an arboretum visit, a bowling alley visit, and a youth soccer game.  Excursions are challenging, but we treasure the ability to leave home with her, as opposed to our month of home confinement during traction.

2. What have been the biggest spica cast challenges?  

Diapering (in general) was our first major hurdle.  Now, we are limited mostly by three issues: 

a) Where to diaper in public places- Due to her age and the position in which she is casted, she cannot fit on public diapering stations.  Either we limit excursions to between diaper changes, bring a quilt with us to change her on the floor, or don't go out.  

b) Car seat- Scottish Rite has generously loaned us one car seat.  As they are rather pricey, we have not purchased a second (we previously kept a car seat for her in each of our cars).  This affects our ability to split daycare drop off or pick up duties, run errands, and manage emergencies.

c) Errands- Even if we do have both the car seat and time to bring her along for errands, she is too heavy to carry while shopping and too large to stow away in a shopping basket. Either we carry her for very brief errands (which do not require us to hold much else)or we push her in the stroller.  I have not yet taken her grocery shopping with me.

3. An earlier post detailed a diaper leak- have there been any more?

We are proud to report that was the singular diaper leak for this cast.  Her daycare earns an A+ for their perfect record- the one diaper leak was at home, overnight.  We were able to clean it early enough and well enough that no odor lingers.

4. Hip Chick seems rather crafty, any new tricks up her sleeve?

She has a blooming career as a smuggler.   Earlier this week, she snuck two pieces of chalk home from daycare in her cast, to be discovered during a diaper change.  Several times, I have caught her attempting to stow away her beloved pacifier.  This morning, she attempted to stuff zoo animal figurines into her cast.  Clearly, she outsmarted us on this matter, but we have implemented more frequent "cast checks."

5. What will her next cast look like?

After her CT four weeks ago, we were advised that she will likely be casted in a similar position as her current one.  Her final cast may have a lower waist and her legs may be drawn closer together, but she would have a bar connecting her legs.  This is pending encouraging imaging results, of course.

6. What would we like to accomplish during the next six weeks of casting?

My husband and I have been too concerned with her care to have a date night since before she began traction.  Time for us to begin letting go a little.

7. Which aids have been the most helpful for her spica cast management?

a) Spica desk- Our little hippie is not a big fan of our bean bag chair.  She is much happier in her desk and I suspect this would be the case for many in her age range.  We purchased one from the rather talented Ivy Rose carpenter, but there are patterns available via other online blogs for parents who would like to build one themselves.

b) Rocking Bee- Our toddler-sized rocker is the best place to dress and clean her 

c) Baby wipes- We have managed to keep her very clean without baths via frequent wipe-downs with her usual baby wipes.

d) Portable booster seat- We have used it both in restaurant chairs and her stroller.

e) Our daycare- We are extremely fortunate in that our daycare wanted to learn about hip dysplasia and how to care for children with needs like our daughter.  They have done a magnificent job of nurturing her and her classmates in this situation.  We could not have asked for more.