Wednesday, January 23, 2013

Self Portrait


     Sawyer placed this picture on my desk today.  I thought it was a picture of an alien monkey.  Later on, he dropped by my office to make sure I got the picture and explained that it was a self portrait.  He pointed out his g-tube , belly button, and scar from his transplant.  

  I'm grateful for the explanation!


Tuesday, January 15, 2013

Sawyer Update 01/15/13

Sawyer lost his first tooth in December. 
     Sawyer's new (40+ yr old) kidney is still performing well and staying healthy.  He was in the hospital for a few days in November because of a suspected staph infection, but other than that, he gets a good break between kidney clinic visits.

     He has been bothered lately with  pain issues especially in his hips, legs and feet.  Part of his genetic syndrome has impacted his bones with mild dysplasia.  One specialist suspects arthritis, probably triggered by the dysplasia.  Sawyer will have an MRI later this month to get more answers.  He has also started some  physical therapy.

     Sawyer's genetic syndrome is still undiagnosed.   All of the testing (and it was a lot) has come up short. Sawyer has literally become a poster child for kids with difficult diagnoses of genetic syndromes.

     One of his geneticists has found a new track to explore.  He knew of a group in France that could possibly help, but the distance creates several insurmountable hurdles.  He brought Sawyer's condition to the attention of a group at Duke University.  They have now invited Sawyer to be a part of their research.

     Duke is investigating the possibilities that Sawyer's geneticist has been considering.  If this becomes another dead end, Duke will do full genome testing.  All of this will happen without us incurring any of the costs because this is part of their research program (Woohoo!!).  It would be great to get some answers to what has plagued Sawyer, especially if it will help him in the future. 

Now that Sawyer has a functioning kidney,
 he's starting to grow again.
     Sawyer is a tough little guy.  We know he struggles more than what he communicates to us.  In the last few weeks, he has had a constant headache. We thought it was related to his blood pressure  because it has been creeping up again.  An additional medicine was prescribed, which helped with the pressure, but not the headache.  So, the docs are currently working to figure this one out.

     Thank you for the continued prayers and encouragement.  So many people still inquire and reach out to us to let us know they are praying.  We are so grateful!