Tuesday, August 11, 2009

Quick Update

Dr. Brands - Pediatric consultation

Time is flying by already! There has been so much to do, but it seems to be going well for the most part. Yesterday we had our consult and discussed everything that has happened over the past year and a half and where to do from here. Dr. Brands is not interested in doing any surgery on William to remove the titanium from his implants and agreed that that would be best left to his CI surgeon if an MRI is necessary.
They gave us our schedule for the week. William had a great time in the wide hallways running his walker around.

This morning he had another EEG done. Everything went great! He went to sleep as desired and did not have to be sedated. Thank you all for the prayers!
(Elly,Wallace, and me waiting for William to come out of the EEG with Michael)

After the EEG we went to the Pediatric Ophthalmology department. After the initial visit, they dilated his eyes and he had a great time playing in the waiting room while waiting for the dilation to kick in.
Dr. Mohney examined William and was very concerned about his progressive vision loss. It is even worse now than it was 2 months ago. Dr. Mohney called in a retinal specialist and they examined William together, then discussed some of the many diseases that could be a cause.
William's eyes seem to be the biggest concern right now. They were in agreement that it is highly unusual for a child to deteriorate as rapidly as we are seeing with William. The vision in his right eye has dropped from -3.50 to -5.00 in just 3 more months. The left eye only had a -.50 change, but is still dropping.
Every doctor we've seen has asked us about an MRI. Dr. Edwards felt like INAD is still a huge possibility, even with the blood test, which he shrugged off as "unstable."
We were able to make it back to the hotel for a brief crockpot lunch. Now we are off for a full afternoon of appointments. I'll update more later.
Prayer for tomorrow: more fasting beginning 7:00pm tonight, water only in the morning, labs at 8:00am.
"The LORD will perfect that which concerneth me: thy mercy, O LORD, endureth forever: forsake not the works of thine own hands." Psalm 138:8


  1. Arizona ConnectionAugust 11, 2009 at 3:48 PM

    Thank you so much for the up date. Prayers, wishes and thoughts are all being sent. I am so proud of and for William! He is truely a gift and blessing. He is being so "brave" and doing his best to cooperate! William and Wallace look very handsome in their "orange shits and shorts! And please let the girls know how very beautiful they look in their new dresses. And a special prayer for Williams vision and prayers for the wonderful doctors you are meeting. May William benefit from these wonderful people more than we ever thought possible.
    God Bless
    Jill A

  2. Arizona ConnectionAugust 12, 2009 at 11:24 AM

    I am sending a second blog and wanted to let you know I am thinking of you and your family.
    I know your days must be long but I am positive William is comforted by your support
    and love. I understand the Mayo Clinic is very impressive in many ways.
    Sarah, I do have a question. The head band you have on in one of the pictures looks like it has bead work. In the picture is looks very beautiful. Does it have bead work or is it cloth with "sparkly threads " that makes it shine? Await your next posting and hope all is going well.
    Jill A

  3. Good luck with all the testing- you certainly have a full plate of tests while you're there! I am still praying fervently for some answers for you guys.


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