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, March 20, 2014

Follow up on prayer request AND a VIDEO!!

Friends!!  Thank you for blessing us with your prayers and notes!!  What a source of encouragement it was for us today knowing so many people were praying for Lucy as well as us!!!   While I'd love to say that today's appointments were a breeze, honesty keeps me from saying those words.  Little Lucy had to "do hard" today and it caused lots of tears BUT while we had feelings of  immense sadness for her, we were privileged to stand beside her (both Mommy and Daddy), hold her hand, reassure her we were staying with her and sing "Jesus Loves Me" into her ears.   And because I didn't feel the urge to punch the technician in the face for inflicting pain on my daughter, I knew it was a sense of calmness that was given to me during a tough time due to the prayers of many!!  So many thanks from both me and the tech!
  We are also trusting that some of the more traumatic parts of today will be erased from her mind (as so many of you kindly told us you were specifically praying for).
  Knowing that many of you reading this have never met Lucy "in person" but have been following her story,  I'm leaving you with a 3 min. clip of "Lucy Live" -- so you can hear her sweet voice, hear her adorable broken English and be blessed by her beautiful smile!!  THANKS FOR BEING ON THIS JOURNEY WITH US!  ENJOY!!

Prayers for the Princess!

Since Lucy's meeting with the neurosurgeon in mid-February, and including today's appointments (within a one month's time span), she will have seen SIX specialists, had x-rays, ekg and  an echo cardiogram!  She has been such a brave and compliant little girl!  Of all the specialists visits and tests, today's procedure I have been anticipating the most and a bit anxious about. However, knowing that anxiety produces nothing good and believing that PRAYER is what our Father God has loving asked us to do, I'm coming to Lucy's friends and family and asking you to pray for Lucy today.  She needs to have a slightly invasive procedure done (for a urodynamic study) that could potentially cause Lucy some trauma.  We're asking you to join with us and pray against any form of trauma this test could have on Lucy's little mind, pray for peace over her and that she will be able to "be still" so the test can be done quickly and accurately.
A  silly/sweet story to share - (Keeping in mind that  just over six months ago, Lucy Kim had never known the love and security of having a Daddy).  In preparation for today's procedure, we had the not so fun job of needing to give LK two enemas! Ugh!  While Lucy tends to be a Mama's girl, it was touching to see that having to undergo this type of " tough stuff" - she really wanted (read that as cried to have Daddy with her too!)  the strong and comforting arms of her Daddy around her!
 She already has figured out that her Dad is her protector, provider and loves her immeasurably - how stinkin' cool is that!!  While most people wouldn't correlate enema stories and God - this silly old Mama sure did - this was a vivid picture to me of myself  and the need and desire to cry out for the security, strength and love of my Father God when going through "tough stuff!"   (Psalms 18:2) -  The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.
April 3rd, we will make a return trip to Hershey Medical Center and meet again with the neuro surgeon to discuss the results of all of the specialist visits and tests and schedule a date for the spinal un-tethering surgery.

Thank you for loving Lucy and praying for her!

**Hoping to get a "birthday post" on the blog in the near future.

Loving her birthday umbrella!

Wednesday, March 5, 2014

Threads that connect and a cord that is tethered

On Valentines day, Lucy had  her second visit to Shriner's Children's Hospital in Philadelphia.(our 1st visit being a month after Lucy came home in October).  In early January, Lucy had the sedated MRI of her full spine that Dr. Van Bosse (from Shriner's) ordered.  While I had gotten a written copy of the radiologist's written report of the MRI shortly after it was completed, I was anxious to discuss in detail the findings with Dr. Van B.

This is my "I can't smile, I'm too afraid of what's going to happen" face
 The short version of what we learned is this:  upper spine looks great.  Lower spine has some abnormality and the spinal cord is tethered.

Hmmm what goodies did Mama pack in my backpack?

 Because of the spinal cord "tethering," Dr. Van B. referred us to a pediatric neuro-surgeon.  Five days later, we had an appointment with Dr. Dias of Hershey Medical Center (a well known hospital about 40 min. from our home).  Dr. Dias looked in detail at Lucy's MRI and spent a lot of time talking to us about what he saw.  We greatly appreciated his expertise and kindness.  He confirmed that she does have a tethered spinal cor in addition to a  split spinal cord.  As a neurosurgeon, he has seen  and operated on many, many tethered spinal cords.

Lucy with a book, Mom with her notepad and Dr. reviewing images

Lucy's Daddy is the BEST!!!

Puzzle books pass the time

Dr. Dias is highly recommending that Lucy has a surgery called "tethered cord release."  This will involve an incision from just below her rib cage (on her back) down to her buttocks.  However, before doing this surgery she will need to see 5 different specialists to make sure all of her systems are working properly and there is no other underlying disorder that we're missing (urology, cardiology, pediatric surgery, genetics, orthopedics!!!!!).  Along with several different tests (ie:  ekg, echocardiogram,etc.)   Guess where you'll find us the next few weeks?!
We are scheduled to return to Dr. Dias on April 3rd at which time he will review ALL of the findings from the different specialists, review them with us and most likely a surgery date will be scheduled.
AFTER this surgery is completed and Lucy is fully healed,  we will then return to looking at castings and surgery for her little foot that has a congenital vertical talus, followed later by the surgery to correct her knee contracture.
While our days have been and continue to be busy with extra doctor appointments, filling out MORE paperwork or reading medical information related to Lucy's medical findings, we are blessed to be currently filled with peace!  I don't write that glibly, because often times in the past, involved or tough medical procedures that dealt with my little ones would have me filled with worry and anxiety.   We are praising God for His provision of kind and knowledgeable medical staff close to home and  loving, strongly supportive parents who fill our shoes at home while we travel to our various appointments with Lucy girl.  This was not available to Qu Yan while she was living in an orphanage in China!  Can you see the direct hand of God in her life?!  His amazing protection, guidance and direction - HE,  my friends is that invisible red thread!
She is a walking, running, jumping miracle in so many ways! While we have many appointments and surgeries ahead, her prognosis for the future looks great.  To God be the glory.
We will hold to His promise of  his continued presence with us every step of the way through tests, visits, procedures and surgeries!  May He continued to be glorified!
We invite you to pray with us for Lucy in the upcoming weeks and months.  Prayers specifically for peace through the "scary times", peace through the pain, a deep and knowing assurance of the love of her Mommy and Daddy and a super quick recovery!
Thanks once again for your support, love and prayers in our journey to our beautiful chosen daughter!