Sporting a KAFO!

As I post this update, today marks six weeks since Lucy's external fixator was removed and her pink cast was put on.

 It's also two weeks since their casts were removed!

The first few days after ex. fix removal, Lucy had pain and discomfort primarily from her hip area.  It was swollen, very tender,  and bruised from the tenotomy.  (the surgical cutting of a tendon)

swelling bruising from hip tenotomy

But in true Lucy fashion, the pain didn't keep her down.  Her new found freedom in "only" wearing a hip to toe cast was embraced.   After ex. fix surgery removal, Dr. vanB. told us to allow her to "bear weight as tolerated."   "As tolerated" to a spunky  five year old just out of an ex. fix. interprets as  "run, dance in circles, and ride all the rides at the boardwalk with  your B.F.F.-- you're F-R-E-E!

suiting up with floaties and cast cover
before jumping in!

   Last summer, Lucy's first summer home, we found out that she's a little fish. Loves, loves being in the water!   Knowing that Lucy would be in this cast for four weeks and our extended family vacation was scheduled during this time frame (which includes lots of time at the community pool),  I did some extensive on-line research of cast covers. I wanted to see if there was any possibility that she could swim while in a cast?  The time and energy spent in researching was worth it.  I found this website, that sold a "drypro" waterproof cast cover.  The product touted that indeed one could swim while in a cast! The customer feedback on that site (and others) seemed to back it up.  So we decided to give it a try.  It was fairly easy to put on and worked wonderfully.  A gift in that it allowed our girl fun times at the pool!

her smile says it all

Swimming was the highlight of her week!  

Very early the morning after we returned from vacation, we headed to Philadelphia to have Lucy's cast removed and her new K.A.F.O. (knee-ankle-foot orthosis) adjusted and put on.

relaxing with snacks while we wait to be called to
cast room

nervous but ready to have her cast removed

feeling a little vulnerable with
her leg being full exposed for
the first time in four months

first view of her little leg revealing all of her
"battle scars"

I was very interested to see what her leg would look like, especially the pin and post areas from where  the external fixator was placed.  We were so pleased to see that all of the wound sites looked great and almost fully healed. Yet another answer to prayer.

Lucy's right leg is tiny and much smaller than her stronger and dominant left leg.  

After the cast was off, we put Lucy in a wagon and headed down to the orthotics department where she received her custom knee-ankle-foot-orthotic.  While a bit leery of anyone touching her vulnerable right foot or leg, she was willing to let the orthotist do what was needed in making the adjustments to her brace.

                                                                         

Until all was said and done with our visit, we made 3 trips back and forth between Dr. vanB. and  orthotics department.  An orthotic appliance really is an exact science!  Not only are they keeping her leg in full extension (which was the correction made from the ex. fix.) but her foot needs to maintain correction at all times from the work completed via casts and pins last fall/winter.  We are told that Lucy will most likely be in this full length brace (kafo) 23 hours a day (taken out of it for her twice a day physical therapy exercises and a bath only) for about three months.

Each new procedure requires an adjustment period. (the ex. fix., the cast and now the kafo).  Lucy not only has to physically get use to each different appliance on her foot and leg but her gait is constantly being changed, her sleeping positions need to be altered.  Pain and discomfort in new places and her psyche needs to wrap around the fact that she's yet again in another phase of transition!  

Speaking of ever changing transitions, we moved our room mate of four months out of our bedroom.   Lucy Kim is back in her bedroom and in a "big"(single) bed.  The toddler bed is packed away and the space of single bed is better for one in a  full length leg brace, especially when you need to roll over.  

Some other fun highlights of Lucy's summer so far include a trip to our local park, riding the barrel train

  

and spending time getting to know her newest "big sisters" who are also from China (our family has had the privilege of hosting Naomi and Janet for a few weeks earlier this summer and they will continue to be part of our big 'ole family in the coming year! 

Our home will be their home when they're not on campus as freshman at Lancaster Bible College!  

So as you can see, girlfriend is on the move - the ponytail is flying in the breeze!  She's got places to go and people to see!

Post surgery update......

At the Ronald Mcdonald House - holding up the very  last link of the
ex. fix. paper chain- night before surgery

On Wednesday morning, June 17th we arrived at Shriner's Hospital for Children to check in for surgery only to find out the entire hospital's computer system was down.  As the waiting room filled with parents and children, I had to wonder just how backed up appointments and scheduled surgeries might become.   Receptionists were handwriting patient identity wrist bands, asking parents to complete forms listing any medical changes with pen and paper!  You know,  like the "old days."  Thankfully, within twenty five minutes, the computer system was back up and running!  Lucy's surgery took place on time as planned.  The handwritten ID bracelet was removed and replaced with a computer generated one.

Lucy bravely walked the hall back to PACU like a trooper.  When the PACU double doors opened, the smile disappeared and her facial expression changed immediately.  There in front of her stood several PACU nurses donned in scrubs complete with the paper operating room hats.  She immediately tightened her grip on my arm and turned her face into my skirt.   With many words of reassurance that she would be taking a "quick nap" and getting her ex. fix. off she bravely walked back to our waiting area where Mommy answered familiar pre-surgery questions and Daddy prepared to carry his girl once again back to the operating room.

Final minutes with the ex. fix. on her leg
Doll "Rosie" in her new home at Shriner's hospital

new pillow case chosen, hospital gown and hat on - check!

And Daddy preps to carry his
girl back to the operating room

Lucy's loopy on versed and Daddy's lookin'
like he's from another planet

Surgery went fast and was over within an hour!  Dr. vanBosse met us in the parents waiting room and told us surgery went well, her bones were lined up nicely and that her leg looked great.  He had put a full length cast on her leg and wrapped it in the color she chose pre-surgery - PINK!

Our girl sleeps and sleeps under anesthesia sedation!  Pre-surgery I had told the anesthesiologist that she takes a l-o-n-g time to come out of anesthesia, so they gave her a little less than what they normally would for a child of her height and  weight.  It still took about an hour and a half ( the surgeon had  said they'll probably be calling us in twenty minutes to go back to her ) until she woke!  And this time she woke HAPPY!

Smiles and a new pink cast

She was hungry.  Very hungry.  She ate several packets of saltines and graham crackers and sipped on apple juice.  We were discharged from the PACU then headed to physical therapy to pick up her cast boot, then we were homeward bound with a very happy ex. fixless little girl!

The ride home was a bit rough for Lucy.  The combination of anesthesia still in her system and the stop and go traffic in Philadelphia caused her to have a very sick feeling belly   Thankfully we made it home with no vomiting.

While Lucy doesn't have much pain, she does have some achiness most especially from where they performed her hip "release" (tenotomy).  Tylenol is keeping it manageable.

Earlier in the week, I was happy to make one particular phone call.  I called and scheduled for Lucy's wheelchair to be picked up.

Lucy is able to "bear weight as tolerated".  Once home, she requested the little red walker again.This  piece of equipment gives her an added sense of security as she builds strength and confidence.  But within 24 hrs. of being home, it was put away because our brave warrior princess found the confidence to go it without the walker.

This girl has been so very excited to ride her car again!  She wants to get places fast and she knows that this is possible via her pink/purple car.  So after breakfast this morning Mommy gave her the green light to RIDE!  (with a speed limit of "medium" fast!)

And so begins Lucy's next part of her medical journey - post external fixator!!!!  

Final days in an external fixator (ending month 3)

Lucy girl is in the home stretch -- only days remaining until "hulk" is removed from her leg!!

This chain had over 90 links when the
countdown started

Only 3 more links!

               We're so excited, I'm tempted to start counting down the hours!  While we had a lot of daily things that became a part of our routine these past three months, bath time was one (yes - the entire ex. fix. was to be immersed in water)  and having a huge kitchen sink that my little girl fit into for bath time was priceless the last 3 months.   My back is grateful to have had less bending and lifting with this task.

But there were still times were play time in the tub with your
b.f.f. was a great past time!

With bathtime over and her hair air drying,
she's sitting on Pop-Pop & Mom-Mom's couch waiting to start game time!

I've been part of an international external fixator support group since shortly before Lucy's surgery.  I've learned a lot from others (adult and children) who have BTDT (been there done that).  One fun thing I noticed from time to time was pictures showing some fun and colorful ex. fixes.  You know-- add some pizazz!  Some folks have added color by painting with nail lacquer and other's I saw used fun patterned duck tape.  Having seen these pics and with thoughts of going out in style, we opened the hello kitty duck tape and the roll of ladybugs and flower duct tape....."

      

And for those faith blog followers who remember several months ago when I posted this post, you'll remember that Lucy's doll, Mei Ling got her external fixator put on a few weeks before Lucy girl.  It was time for Mei Ling's ex. fix. to be removed!  And now her leg is straight!

However, a visiting friend "Rosie" whom also has a bent leg, needed to have an external fixator put on stopped in for a visit.  She  will travel with Lucy (and Mei Ling) this week to Shriner's Hospital for children.  Rosie's ex. fix. was also  put on by the experienced Dr. Pop Pop.  Little Rosie will stay at Shriner's as a visual for other little people with impending external fixator surgery in their future - much like Mei Ling was for Lucy. Lucy's "shoe" orthotics will also stay at Shriner's as samples with the hope that other children will possibly be blessed by the orthotic team and be able to walk while in their ex. fix too.  

one FUN looking "shoe" orthotic!

Mei Ling, Lucy and Rosie!

As I reflect back on the past three months, I can't say it was easy, or it flew by or that I'd want to do it again.  But I can truthfully say that God's faithfulness, provision  and love was experienced in a way we've never experienced before and for that I'm humbled and grateful.

Just last week when Lucy and I were talking about her ex. fix. being taken off soon, she stopped what she was doing and said "how Mom?"  I didn't know what she meant and I asked, "why are you saying "how?"  She said "how my ex. fix. come off?" For months we have talked about it coming off, but Mommy failed to explain HOW/WHERE it would come off.  Without any forethought, I quickly replied  "oh, in surgery, in surgery they'll take off your ex. fix."  Immediately my girl broke into tears.  Big tears and sobs.  I think my heart may have skipped a few beats and my blood pressure dropped because suddenly it hit me like a ton of breaks - I had told my girl "surgery" (AGAIN!) - she now has put it all together and after every surgery she's had pain.  Lots and lots of intense pain for days!  Of course she cried, became scared and suddenly wasn't so very happy about the cage being removed from her leg!  I scooped her up (as best as I can with metal being a barrier between us)  and promised her she'd be asleep and it wouldn't hurt at all, because she can't feel anything when she's sleeping. I then re-explained that when she wakes up she'll have her big cast on her leg.  A cast like one of the many she had on when they were helping her foot become straight.  I reminded her that Jesus will be with her in the surgery room just like always and Mommy and Daddy will be waiting there for her when she wakes up.  We've reviewed this scenario several times now in the past few days and I can see she does trust what I'm saying but I can also tell that her past experiences have indeed  left some painful, hard memories that are still very fresh.   

Friends, I'm asking you to please join us in prayer on Wednesday morning, June 17th.  Please pray for that peace that passes understanding to encompass Lucy Kim as she enters the operating room again and that she will have no trauma to her psyche or body from this next surgery! Praise God with us for his love, faithfulness in the hard times, guidance to spectacular doctors, support of family and friends and praise too that there have been no complications during this ex. fix. journey!  That's A LOT to be thankful for friends.

                          A thank you to each one of you  for your on going love and support!

The thought that the world might have missed out on the glory of her makes me teary!