Friday, March 1, 2013

Praise and Appointments - Updates

"Let the hearts of those who seek the Lord rejoice.  
Look to the Lord and His strength; seek His face always."
1 Chronicles 16:10-11

It is amazing how some of the best life lessons can be stated so beautifully through a children's Bible.  Here is an excerpt from the story about Moses we read last night with the boys (found in The Beginner’s Bible):

So much truth is contained in these simple sentences.  God had a specific calling on Moses' life, yet Moses had his deficits.  How did God provide?  Through his brother who was gifted in the ways Moses was not.  Together, God used them and was strong in their weaknesses.  I hope John and Daniel can be used like this in each others' lives!  And I am grateful for the many wonderful friends and family I have who fill in my gaps.  I imagine you are too.  In our limitations, we are bonded to our community on earth and God receives the glory!

Medical Updates:
On Wednesday John had his big appointment with mitochondrial world-renown guru, Dr. Shoffner.  We haven’t seen him since 2010; he had ordered and analyzed John’s muscle biopsy in January 2010 and diagnosed John with the devastating and progressive Leigh’s Disease that March.  Undoubtedly, we were nervous about this appointment, and the old feelings of fear, not knowing what to expect, and the need to be fully “on” came rushing back.

However, the appointment was a blessing!  Dr. Shoffner was incredibly kind and spent a lot of time with us; he even saw John for free due to the interesting nature and significant research potential of John’s case.  AND he wants to see John every 3 months.  He is working on a scholarly article regarding John and Warren; what a gift that our children are contributing to science and the well-being of children and adults in the future, AND that Warren’s life on earth is continuing to have a crucial legacy.  I am one proud Mama!
But most significant was hearing Dr. Shoffner state, "John certainly does NOT have Leigh's."  Praise the Lord!!  We knew that all along but it was really nice to hear it from him.  Moreover, he said in over 25 years he has only seen 2-3 cases of improvement like John's (seizures disappearing, no need for meds, the brain lesions in the basal ganglia healing/disappearing, microcephaly resolving, lactic acid levels normalizing, medical and health stability, etc).  Basically, he agrees JOHN IS A MIRACLE and no one can say what the future holds!  And what does this show to me?  The power of prayer!  YOU and your prayers have made a difference in John's life and clearly in ours as well.  Dr. Shoffner also recognized John's intelligence, a typical strongsuit of folks with his genetic mutation in conjunction with his mitochondrial issues.  Lastly, before our appointment Dr. Shoffner talked at length with John's Boston doctors, and it is a tremendous blessing they are all on the same page and that we can consolidate John's care here in Atlanta.  

On Tuesday, John had his mobility and seating appointment at the children’s hospital Tuesday and was fitted for a new stander (which can also be used for sitting/eating) and a new pacer/gait trainer (which he learns to take steps in while mostly upright).  Aspects of the appointment were emotionally trying but all in all, we believe the new equipment will help John and put him in the proper positions to work on select muscle groups and exercises (we probably won’t receive the equipment for 2-3 months). 

Stander we ordered that also converts to a seat
Rifton Gait Trainer / Pacer

Additionally, John had a new Occupational Therapist come yesterday and John did very well in his evaluation!  We are so grateful for how he is using his hands.  The new physical therapist from the Atlanta Public School system also came, and we really enjoyed working with her!  To clarify, since John is over 3 year old, he does receive services from the public school system (which takes over after early intervention).  However, John has “homebound” services due to his weaker immune system.  This also allows us to do our home program from the Institutes in Philadelphia rather than having John spend most of the day at school.  Some day he may go to school, but for now we are happy to have him at home!  

THANK YOU FOR CONTINUING TO PRAY FOR JOHN'S FULL HEALING!  We learn so much on this journey and draw so much strength from each one of you.


  1. I LOVE what we can learn from children's Bibles! Exciting news about John!! God is SO good! xoxo

  2. Such good news! I look forward to your updates and get excited every time they are in my inbox :) Our youngests remind me a lot each other. They look similar and seem to both have very...spirited(?)...personalities. I hope we get to see you all sometime so all the kids can play. We need to make an Atlanta trip now that Megan and you are there, and my youngest brother, of course!

  3. SO glad to hear the encouraging news! I love the unforseen surprises of our amazingly good God!!

  4. So encouraging about sweet John! The picture of you and him is adorable!