Friday, December 9, 2011

Closure in our decision

As we near this Christmas season, I am reminded of the lyrics of one of my favorite Christmas songs 'Breath of Heaven' : It has become my prayer these past few months as we have endured some difficult times. 

I am waiting in silent prayer
I am frightened by the load I bear
In a world cold as stone
must I walk this path alone?
Be with me now
Be with me now...

Breath of heaven
hold me together
be forever near me
Breath of heaven

How wonderful it is that we have a sovereign God who walks along side us day by day, hour by hour.  I am so thankful!

Today, we meet with our orthopedic surgeon.  After much research, dr's opinions and discussion, we have made the decision to amputate.  This, as most of you know, has been a tremendously difficult journey for us, however based on the information we have today and Jack's specific condition - we feel it is the very best decision.  We are SO very thankful for all that have gone before us (whom have had both amputation and limb-lengthening) to give us inspiration and hope for Jack that no matter what - he will live a FULL life.   Surgery will take place January 31 (as long as jack is well - not even a sniffle or cough!).  For those of you wondering  - he will essentially only have his foot amputated.  They will save his heel - as this is such specific tissue used for weight bearing.  Therefore he will be able to better 'stand' or support himself when he is not wearing his prosthetic.  Otherwise he will wear a prosthesis. Since he has about a 20% length discrepancy from the other leg, the prosthetic will be made to correct this difference.    He will be in a cast after surgery for about 6 weeks (as I understand) to allow for heeling.  Then he will be fitted for his 1st prosthesis shortly after. 

We continue to need support and prayer, but have a tremendous sense of closure and peace in our decision.

Here are some pictures of Thanksgiving,  Grandma, Grandpa and Uncle Shaun's visit to Charleston this past Month!
(i hope to upload some pictures/video from my phone when i can figure it out...)

Friday, September 30, 2011


Over the past weekend we took a trip to Boston, MA and Portland, ME.  It was a *much* needed trip together as a family - as our time we have together is very limited these days.  We also were able to see Dr. Upton at Shriners Hospital (finally!!) in Boston.  He is plastic/orthopedic surgeon specializing in upper extremity congenital deformities from children all over the world.   His vast experience gave us great perspective on Jack's right arm/hand.  We discussed since we have not come to a decision regarding his foot (amputation vs lengthening), if we did choose amputation could we use part of his toes/foot to make a better functional hand (ie toe-to-hand transplant)?  He discussed at length his experience with this, Jacks fused elbow and muscle, nerve and vascular involvement. He studied Jack as he played and used his right arm. He was rather impressed at his function and use already.    At the end of the day, his conclusion was to leave Jack's arm the way is was, possibly separating his 2 fused fingers.  I can say, I was a little relieved.  I had gone into the appointment expecting endless possibilities of correcting his arm with endless surgery...but I was a little glad it was more black and white.  (At least something is at this stage of the game!) No surgery, no toe-to-hand transplant, no lengthening of arm, no creating an 'elbow'....essentially his message was 'if its not broke, don't fix it' (well he didn't really say that...i did).  It meant a lot coming from a surgeon, for one specializes in surgery and loves doing it, and two how he truly took jack's overall quality of life and arm into perspective to give us his honest answer.

Boston and Maine were beautiful.  Boston made me miss the big city feel!  I really enjoyed all the food and being able to walk everywhere in the city.  Jack loved all the sights and sounds.  It kept him so busy that he didn't have time to be whiny ( well most of the time ;).

We appreciate continued thoughts and prayers for our decision regarding his leg. He is doing well with his custom-made brace, trying to walk with assistance.  I am so very proud of him!

Here are some pictures from our trip!
mommy's sunglasses!

Marry-go-round is a little scary...Jack didnt want to ride on the horses

Random cruise ship in the background....

Yummy Lobster Roll in Maine! 

Thursday, August 25, 2011

Jack Happenings...

Sorry, it has been a while since I posted anything!  We have been busy and so has jack!
He is 17 months already.  Things he is doing...

  • saying small words:  lawnmower, he says 'monmor' (wich he is obsessed with..everywhere we go he thinks there is a lawnmower...even when he wakes up first thing in the morning and after naps.)  mama, dada, banana. apple, cookie, Nite-nite, bye-bye, help, more, NO....
  • knows sign language for "more" and " milk" 
  • Walking with assistance
  • using fork and spoon to eat 
  • Inventing new games to play "Boo" and "whee!" - silly games we play at night, before bed but he remembers and want to play them every day!
  • Physical therapy 1x/week
  • Occupational therapy 1x/ month
We are currently awaiting approval to get a 3rd opinion on his upper extremity from a physician in Boston, MA.  It has been a journey finding him - but we are hopeful for some sound advice. We don't know if we will be going through Shriner's system or paying out of pocket to see him in his private practice.  Prayers for quick resolution to getting in to see him.    

Working at the computer..


Love my blankie- i call 'nah-ni' -  and my thumb!

Love reading books!

Standing with my old brace on...

My 1st pair of shoes and my new brace!  Hooray!
Hiding in my cool cardboard box house daddy made for me!  Hooray for the engineer...!  

Saturday, July 16, 2011

Oscar Pistorius

Another amazing athlete with Fibular Hemimelia....Thanks for the inspiration

About Oscar Pisorius

Wednesday, July 6, 2011

Local Article in our Paper

Thanks Jerome for being an inspiration to us and Jack!  Awesome Story in our local newspaper of a boy born with Fibular Hemimelia; Now see where he is today......

Sunday, June 19, 2011

The Beach!

This past week, some friends of ours were visiting from St. Louis and stayed on Seabrook Island.  Jack and I got to spend some time going to the very nice beach and pool with them!  Jack had so much fun!  Even though he'd been to the beach a few times before- he still didnt know what to do with sand - at first he thought he should start eating it! But quickly realized the texture and taste were not what he was used to.  I am sure we all ate a little sand in our life...

Here are a few pictures of our adventures: