Today's Update

There has been so much blogging activity in the last couple of days because so much has been going on. This morning we went to see Dr. David Granet at Shiley Eye Center at UCSD Medical Center for a second opinion on Audrey’s eyes. Dr. Granet is one of the top eye doctors in the nation. His resume is incredible, and the amount of knowledge he brought to the examination room was overwhelming. Barbara, Brian, Audrey and I were there for five hours. We gave him some family history, reviewed notes from our other doctors, he dialated her eyes, and then examined them.

Audrey fussed through the exam so he wasn’t able to get a great, unobstructed look at her eyes, but he was able to discover that the optic nerve in her left eye may not be fully formed. This doesn’t explain, however why her right eye isn’t responding much to light. We are not sure what to make of this, since her MRI revealed no issues with the optic nerve, at least so far as we know.

He will examine her further when she gets her ERG done since she’ll be under anesthesia and thus unable to fuss. He also suggested that we see a doctor at Shiley that specializes in genetic retinal degeneration. So in a way he brought some optimism to the situation, but on the other hand we now face a new bevy of challenges and potential issues as a result of his examination. As he said, you keep looking until you find something out of the ordinary. As of now, that something has not been found.

We will do all of this if we can convince our insurance to enroll her in the UCSD Medical group. That’s another battle that may be brewing. After today, we have realized that Shiley Eye Center is where Audrey needs to be. There are so many world-class doctors and scientists working and collaborating to research and treat a number of eye diseases.

I called to see if Audey could be moved to the UCSD medical group and I was told that I could do so only during my open enrollment period, which happens to be in October and November. We now have to appeal to our insurance provider for an exception to this rule, and if we are denied, we will have to look at additional options, which we hope is not Mastercard supplemental insurance, if you know what I mean…

Even before today, one thing that has continually amazed us through this process is how lucky we have been with the care Audrey has received. Not just medical care, but the network created by friends, family, and this blog has been incredible. Whether it is someone like Mark Wagoner who took time out of his evening to discuss how to best write the appeal letter to the insurance provider (based on his years in the industry) or the couple Barbara and Jerry met on the beach in St. Maarten that have given us the name of their son, who is working on retina replacement technologies, our knowledge base has been bolstered by people with a genuine concern for this little girl, despite some of them never having met her. The power of human compassion is just amazingly humbling and moving.

Things are happening very fast, and we truly do appreciate those of you who have taken the time to leave a comment, and look forward to keeping you in the loop as things progress with Audrey.