Monday, October 10, 2011

Pig Toes and Poor Vision

     Many are aware of Sawyer's kidney failure, but most do not know about his chronic eye issue.  

     In 2009, Karen and I observed Sawyer struggling with symptoms of blindness  in low light situations. A low vision specialist was able to quickly confirm the night blindness and severe myopia (poor vision).  She suspected Sawyer's condition to be a rare eye disorder called "Retinitis Pigmentosa". 

 "Pig toes… What?!?"

     In 2010, we visited Duke University for specialized testing. Although the test was definitive, the diagnosis was not.   The Duke eye specialist said Saywer's eyes had characteristics of Leber's congenital amaurosis, but this usually presents itself at birth or within the first few months after birth.  Therefore, she said in general terms that Sawyer had a cone-rod disorder or a retinal dystrophy.

     At this point, we do not know how Sawyer's condition will progress.  Everything I read indicates that these disorders get progressively worse and typically end in blindness, but we really do not know. 

     We have considered doctors from all over the country.  However, we found one of the best eye specialist to be here in Hampton Roads. 

     All of the other specialists had warned us that glasses would not significantly help Sawyer's vision, but this doctor gave us a good prescription and encouraged us to get the glasses. 

     We wasted no time getting those glasses and they made a huge difference!  Sawyer has good vision with glasses except in low light situations where  he still has night blindness.

     This doctor has also been working hard to determine if there is a connection between Sawyer's rare eye disease and his rare kidney disease.   It appears his suspicions will turn out to be true.  On Friday, our kidney doctor got back the results from the genetic testing.  We are still processing the all of this information, but it does indeed appear to be a connection. 

     We will share more soon, but it looks like some of the puzzle pieces are starting to come together.  We have a lot to consider and understand.  Again, I will share more as soon as I can.

     Thank you for your continued prayer and concern for Sawyer and our family.  So many of you have been walking this out with us and we are grateful!


4 comments:

Joan and Jan B said...

Dear Toby and Karen,

Thank you for posting this information. The connection between the kidneys and "pig toes" does seem to make sense, and hopefully will help doctors with treatment programs.In the meantime, we are continuing to PRAY for God's Divine leading for each and every challenge. I know I've been MIA from here (long story), but Sawyer's name is posted to my desk for a prayer reminder, no matter how hectic things may be here. Hugs and much love to you all. Ps. 91

Danielle said...

Continuing to pray daily!

JJ said...

Toby and Karen, every few days I check in to see how Sawyer is doing. My heart hurts for Sawyer, and for you, on days like today. All I know to do is to pray for God to provide you with the daily Manna you need to face each day and the spiritual and emotional strengths to face, and overcome, the giants that each new day seems to bring. I find myself mercifully crying "uncle" to God on your behalf...and like you...having no choice but to trust that He will carry you, knowing that He CAN make all things good in time.

The genetic testing will likely yield answers and provide direction that will benefit Sawyer now. My hope is that these results will also head off even more major health issues, that would have resulted, had his current medical situation not been a catalyst to dig deep for answers.

Holding you up in prayer.
JJ

Kelly said...

Hi,
Sawyer is on Jacob's soccer team so we have been following the blog and saying prayers for you all. Jacob's grandmother has retinitis pigmentosa also. Thanks for keeping us updated.
Kelly Young