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

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!

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