Today Finley had her biannual checkup at the retinal specialist. For those of you who may be new to the blog, every 6 months Finley sees a specialist that deals with people who have her condition and people like her. Mostly, it is people KIND of like her - older folks who are losing their vision to macular degeneration.
But among the older folks and many doctors at the Yale New Have Eye Center (fabulous place by the way - supported and built completely by the Lions) is Finley's pediatric retinal specialist.
We originally started with a doctor in Boston two years ago. But we didn't like her. She was not a people person, which I thought was weird for a person in pediatrics. But she is older, and close to retirement, so I will try and give her a break. Try.
So we switched. And for the last 1 1/2 years, we have been going to Dr. Huang at Yale. And we love him. He is young, and very interested in research in retinal diseases, and actually is involved with some of the research at the University of Penn. He knows our Dr. Bennett. So - we have stuck with him.
Finley is kind of a rock star when she goes to these appointments. She has a rare condition (LCA) with an even more rare type (RDH12) so when she comes to the office, we see a TON of people. We don't mind. It helps spread the word and it helps teach others about LCA. We are not ones to keep quiet about it, that is for sure. I am happy to talk about Finley and what we are doing to cure her and what it is like for her with the vision she has (what we know, anyway). So today was a record. The doctor had about 20 people during Finley's appointment. Medical students, residents, etc. all came to ask questions and listen to her appointment. Finley did her best to show off. Dr. Huang asked a lot of questions about where we are in our research efforts and how many families we have gathered so far. So it was a great appointment.
Today, Finley and I drove nearly 3 hours for her appointment (each way) but it was worth the trip. Today's appointment showed that there has been very little change in her vision. Her vision last February was 20/200 in one eye and 20/100 in the other. Now they are 20/200 equally. And, as most of you know, her vision is not correctable with glasses. Normal vision is 20/20. So - her vision is pretty blurry.
But there has been NO increase in her "black areas" in her retinas. That means that her loss of central vision hasn't gotten any worse. For the last 6 months - really for the last YEAR - the loss of central vision has remained STABLE. We are so thankful.
We would like to thank everyone for their prayers for Finley. We know that God has heard you and has bought us more time to find a cure. We have also been watching her diet and increasing her intake of antioxidants, which research has shown will help slow the degeneration. We keep her eyes covered during all waking hours with dark glasses or sunglasses since that has also shown to slow things down.
But we know that you having her in your thoughts and prayers is what sounds the highest when it comes to Finley. We ask you to continue to help our fight and continue to pray for Finley. We thank you for EVERYTHING you have done for our family and our little rock star.
An act of goodness is of itself an act of happiness. No reward coming after the event can compare with the sweet reward that went with it.
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