Open My Eyes to See Your Majesty

I have not written in several days because frankly, I haven't had it in me. I did try yesterday to post a video of Ruth eating sweet potatoes but the file was too big and never did upload.

I will say that we started this blog to provide our parents and opportunity to see Ruth and her developments since they live so far away. Now, this blog will additionally serve the purpose for updates on her medical condition as well as an outlet for me to express our emotions.

The weekend was hard for Brian and me. As we tried to wrap our mind around the idea that our child is a child of "low vision" we analyzed everything she did looking for clues. We both became depressed, but Ruth smiled and giggled and spit up carrots every time we tried to get her to eat them. Brian and I have clung to each other feeling separated from the world. Saturday morning was the worst for me and Sunday afternoon for Brian. But we made it through the weekend. Thank you to so many of you who called or e-mailed. Thank you for praying for her and putting her on your church's and bible study group's prayer lists. To Angela Rogers Pierce, thank you for your words. Your call came at the exact time I needed a phone call and the things you said were perfect.

We took Ruth back to the ophthalmologist today and he confirmed her diagnosis of OA (see earlier post for definition). However, he did say that the amount of pigment in the retina is directly related to the amount of vision on has. Ruth does have some pigment, although not the normal amount. He said that OA is a spectrum disorder, meaning that has a range. Now, while Ruth can see (she smiles when we smile, follows objects) to the extent that she can see we will not know for years. Of course, this is tough for us. He did say that it is in his opinion that Ruth will be on the good end of the spectrum.

Ruth has always liked the ceiling fan and lights, which we took to me that she could see. The nurse said that children with low vision will look at ceiling fans and lights. She also said that while Ruth can see us, we are probably fuzzy to her the further away we get. Ruth will more than likely be slower than other kids to crawl, walk and talk. However, she will reach these milestones. This is also hard for us because Ruth has reached every milestone either right on target or earlier. To acknowledge and accept that Ruth is a child with low vision is hard because we see her see. Now I am wondering if we are all Monet paintings to her. (I prefer Renoir, myself). But the hope we are taking with us today is that she is on the good end of the spectrum. We cling to that, but we will need to be reminded of that, I am sure.

We are also having to see a slew of other doctors. We have a second opinion on October 7 with another ophthalmologist, we have to see a retina specialist, a geneticist,and a pediatric dermatologist. Are you adding up the dollars? Is is funny what you will do for your child, isn't it? I have been needing to see a dermatologist for over a year about a mole and Brian put of getting a crown for a year. But we aren't blinking an eye when it comes to making these appointments for Ruth.

Here is an amazing praise. We have been told that the genetics counselors are booked until December and in Georgia you have to qualify to see them due to the high volume. I left a message with a doctor who is in private practice in genetics and she just called me back and we have an appointment next Thursday. She sounds so positive and so caring on the phone.

For people that are asking what we need, we don't know anything tangible. I know Brian would say babysitting so we could have a date but right now I don't really want to leave Ruth. But I will provide a prayer list that will be updated. I would ask that if you read these blogs that you let me know time to time by posting a comment or by an e-mail. I do feel more positive right now after talking with the genetics doctor.

Also, we have a meeting with the Center for the Vision Impaired next week. The lady on the phone said that while doctors will say that people with albinism tend to be smarter than the average public, she said that without a doubt, people with albinism are off the charts intelligent. We have had clues that Ruth was smart and has been called clever by more than one doctor.

Here is a prayer request list for today:
Peace and acceptance
Able to get appointments with the retina specialist and dermatologist
Peace over financial worries

Thank you. I will try to post again soon and will post some updated pictures. We really value the support we have received.