Isaiah 43:5

Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. Isaiah 43:5

Thursday, February 19, 2015

Hearing HARD News..... (part 1 of 3)

The end of January Lucy Kim had her appointment with her Dr. in Philadelphia at Shriner’s Hospital.   This visit was to re-check the position of her (now) corrected vertical talus on her right foot and also give us more information about the next steps needed to repair her knee and hip issues.  (If you have met Lucy in person, you have seen that she is unable to straighten her right leg as her leg is in a continual bent position).  We're told that her right leg has been most likely contracted around the knee since before her birth. In the medical world, it's referred to as a knee flexion contracture.
 * you can click on any picture to enlarge
passing time playing Hello Kitty Uno
friends make life fun
Knowing Merle was out of the country on a mission trip, a special friend (and her dear teen daughter) graciously rearranged their schedule to go with Lucy and I to see Dr. vanB.
  My friend had made this trip to Shriner’s hospital with us this past fall, going to one of Lucy’s leg casting procedure and she knows from experience that an appointment at Shriner’s could be an hour long or eight hours! I was so appreciative and grateful to have her company and a “second set of ears”.
Pleased with the way things looked with Lucy's foot from her November and December surgeries, 
Dr. vanB. then began to assess Lucy’s gait (walking pattern), did a quick measure of her knee contracture and reviewed a previous x-ray of her hip.   Deciding he did not want to miss anything internally, he ordered a new set of x-rays of Lucy’s leg as well as new orthotics. 

We then proceeded across the hall to the x-ray department, and then onward to the orthotic/prosthesis lab.


After x-ray and measurements were completed, 
Measuring for her KAFO (knee, ankle foot orthosis) to
be worn post surgery.
 the four of us grabbed a quick lunch in the cafeteria, and then headed back to see Dr. vanB again.  He would review the x-rays and determine what he thought would be Lucy’s next medical steps.  Dr. vanB. looked at the x-rays and was surprised to see what he thought was a slim chance of seeing,  This new found information (via x-ray) now meant he would need to perform a much different type of surgery than originally anticipated (for correction of Lucy’s knee contracture).  He noted that the position of Lucy’s tibia on her femur means the contracture is larger then what they measured when done externally. I was.not.prepared for the news ahead....
this is how they measure Lucy's contracture externally - Lucy' leg isn't this hairy though :)
(didn't we use an instrument like this in geometry class ?)


* If you have been following our blog and wait for facebook notifications to know when a new post has been added, please note that I'll be taking a facebook leave of absence for a season beg. the end of February. If you'd like to get an e-mail notification(only  when a new post is published), you can sign up on main page "follow by email" but NOTE you will have to confirm the first time that you want notifications or your account will not be activated.*



  

Monday, February 16, 2015

Lucy's colorful and continually changing footwear.......

We thought our friends might enjoy seeing Lucy's ever changing footwear since October of 2014.....
(click on a picture to enlarge)
Starting the process in PINK!

Sunshiney YELLOW!
Tie Dye

Sissy came home and wore one too "Same/Same"
  
Pieces from all SEVEN of her casts
Last cast -a split cast overlayed with green ace bandaging

Ahhh.... I wore ALL of those?!


Now that the casting process is over, it's time to move onto some snazzy new shoes.

The "elevator" shoe
This shoe lift helps with Lucy's gait A LOT!!
Difference in her two shoes






Wednesday, January 28, 2015

Cousins, Cowboys and Classmates

While Lucy was still using her little red walker, her cool cousin, Robert and his family came for a visit.  Lucy was excited to see all of the family because she loves each of them but this time in particular she wanted to see Robert.  She remembered that Robert too uses a walker and they would be "same/same".  Like most kids she doesn't like standing out as different but instead likes having someone who "matches."  While dear Robert is much older than Lucy Kim, he was such a good sport and allowed me to take pictures of the cousins with their walkers. Robert also prayed a most special prayer at breakfast over little Lucy.  Lucy was getting ready to go to a physical therapy appt., and knowing from experience that p.t. is hard work and often painful, Robert's prayer was uttered with much love and a special understanding.  Love this boy, his big heart and his family!
(click on any picture to enlarge)
"Same/Same"

Robert showing Lucy how to "lounge" on top of the walker :)
We had another unexpected but very special family event in mid January.  Lucy and her brothers, John-Merle and Kaden were chosen to be honorees at the Pennsylvania Farm Show in Harrisburg!  The Children's Western Wish Foundation had contacted our family.  Apparently our name was submitted to the foundation and the founder, Miss Glee.  Cowgirl Glee called me while we were on one of our medical trips in Missouri wanting our permission to honor our children and  give them a special, fun and full of surprises kind of day?!   Wha???  Reallly?    And was it ever an awesome, fun day full of memories!  An added  bonus was being able to take the children's "second parents" along for the day - their very beloved  Mom-Mom and Pop-Pop!  Our young cowboys and "princess"cowgirl were given cowboy boots, signed cowboy hats (from ea. participant in the pro-rodeo), a very special silver belt buckle and a standing formal family recognition before the start of the rodeo.  Special seats to watch the rodeo in the "Governor's Box" gave us a fabulous view of the entire rodeo.  We were so shocked and so honored by everyone and everything.  What a gift!!  New rodeo fans were added that day for sure.


enjoying the DELICIOUS home made powdered doughnut sample

A family that slurps fresh milkshakes together, stays together!

Riding up on Pop's shoulders


Lucy's Pop-Pop "ran the barrels" with her
because she wasn't able to walk/run comfortably on
the uneven terrain.  That Pop Pop of hers is the best!!




Big brave cowgirl on the brahma bull

Excited for the rodeo to begin

Special made sash for "Princess Lucy"

"Glee" (pic. above)  is the wonderful cowgirl and
 the founder of the C.W.W.F. 
 Some have asked me if Lucy's still attending preschool and Chinese preschool once each week.  The answer is YES to both, if we're able (not at a doctor appt., in physical therapy or in surgery).  Preschool is the highlight of her week and she very much  looks forward to these weekly times with her friends.  These anticipated fun times are exactly what she needs interspersed between the medical appointments and physical therapy appointments.
Making a clay panda bear during Chinese preschool

It was a little tough being non ambulatory but
we made the best of it

Lucy's sweet Tuesday morning friends!

Snack time!
A Thomas the Train birthday party was another fun time this month....
B.F.F.'s in their trains and conductor hats

F.A.M.I.L.Y.
Since having her vertical talus repaired and both foot surgeries behind her, Lucy has been going to physical therapy 2x/weekly. Most of you have read (repeatedly) one of my favorite quotes - "Where God guides, He always provides".  Yet another blessing in our medical journey has been the location of our twice weekly PT appts. (5 min. from our home!!!) with a wonderful, caring and experienced pediatric physical therapist.  Our schedule is full and the blessing of not needing to travel long distances twice a week for therapy is a gift to this Mama!

 A visit is scheduled for the end of January in Philadelphia at Shriner's hospital.  Dr. vanBosse will check Lucy's corrected vertical talus AND also let us know the next steps needed in helping Lucy.  Next on the docket is looking into helping her with her knee contracture  and addressing her hip problem......






Monday, January 26, 2015

Third surgery of 2014 and 2nd Christmas home......

On December 23rd, Lucy was in St. Louis Children's hospital operating room again.  This time to have the pin in her foot removed.  Surgery was quick and went well.  Dr. Dobbs was pleased to let us know that Lucy's foot looked great with her talus bone in her foot now being in the correct position.  We were happy to say adios to a full leg cast.  Lucy was introduced to her ankle foot orthotic (AFO) and also the nighttime bar she'll wear each night for the next two or so years.
Putting on the hospital gown and getting ready to take off the LAST cast

Seeing her foot again

Dear Daddy always by her side

Sporting her AFO with her new kicks

Not so thrilled with the new nightwear
While in Missouri we stayed for the fourth time at our "home away from home" - Haven House.  As I've mentioned in previous posts, this place is a blessing to families who have a loved one needing medical care far from home.  Lucy, Daddy and Mommy enjoyed seeing the Nutcracker by the St. Louis Ballet Company with the complimentary tickets we received from Haven House.  We also were surprised when we went to our room to find a stack of presents for Lucy and us in front of our door.

We're old, we don't do "selfies" well


Surprises at our door

Lucy with some of  the sweet employees at Haven House

A sweet little friend at Haven House
(who sported TWO casts)
 On Christmas Eve. afternoon we arrived back in PA and enjoyed family time as we celebrated our Savior's birth.
Silly family times

Our beautiful, and extremely talented and creative daughter who lovingly prepared
our fabulous family Christmas dinner.  Not needing to plan or  prepare
a dinner with all the travel to Missouri was an extra special gift for Mom

Setting the big 'ole table
 Lucy was non mobile for two months, so bearing weight and trying to walk again took some time.   It was both painful and scary.  To help build up her confidence, we brought out the little red walker (remember that from her spinal cord surgery). Two to three weeks later, the walker was put back into storage as our girl was once again ambulatory.