Friday, May 15, 2009

Disappointment

Dr. Siatkowski
We finally were able to see the pediatric neuro ophthalmologist today. The good news is that his pale optic nerves are not caused by nerve damage. The bad news is that they are caused by his degenerating retina. William's eyesight has definitely gotten worse. He is being fitted for glasses and will be undergoing another sedated procedure called an E.R.G. (electroretinography). Hopefully it will tell us how bad his retina is and will be in the future. The doctor could not tell at this point if he will lose his eyesight altogether, though he does expect it to continue to get worse. He is hopeful that he will know more definitively about William's chances of blindness after the E.R.G.
The procedure will be in about 2 weeks. We are diligently seeking another facility for this procedure, but there is not one in our state. We will do it here if we must, but if anyone knows of a facility that is capable of this type of procedure and is child-friendly and sensitive to each child's unique needs, please contact us as soon as possible. We are willing to drive anywhere in the USA.


William really liked his eye patch, especially when they were done with testing and he was able to wear it as a sticker on his shirt!
Some time ago, one of my daughters wrote out this quote for me that seems especially pertinent at this time:
"A house built on sand is, in fair weather, just as good as if built on a rock. A cobweb is as good as the mightiest chain cable where there is no strain on it. It is the trial that proves one thing weak and another strong." - Beecher
I must say, I'm feeling pretty weak right now. I'm glad the Lord is strong!
"Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." 1 Corinthians 1:3-4

2 comments:

  1. I am not sure what to look for but I do know "Phoenix Children's Hospital" continues to be written up for the amazing procedures and difficult medical conditions they address. It seems the best are back east or in Phoenix. I do not know if its because of the weather or the fact the area is know for having "hi income" residents. It does not matter, perhaps you can contact them.
    Specialty Care Ctr - Tool free 888 908 5437
    Neurology --------------------- 602 546 0970
    Patient and Family Services --- 602 546 2273

    And we have "Mayo Clinic"
    General information ----------- 480 515 6296

    Of coarse you can pull either facility up on the web. Try "Phx. Children's Hospital" first.
    Thank heavens we have the Lord by our side!
    God Bless
    Jill A

    ReplyDelete
  2. I am writting in reguards to the fax our office got today. Dr. Betchkal suggests that you contact Nemours Childrens Clinic in Jacksonville, Fl the number is 904-390-3705. These are the best group of Pediatric Ophthamologists and Neuro Doctors in the state of Florida. We hope we have helped you wish your son the very best.
    Dr Janet Betchkal and staff

    ReplyDelete

I don't publish comments. I'm not good at checking them. :) You may email me directly at Joshalyn@rightpathridingacademy.org.