Day 24
The majority of you don’t know that Nathan had a brain MRI just prior to going home from his 6 week stay at Brenner’s Children Hospital in 2005 after his birth. It took the doctor a couple of tries to convince me that a MRI was needed. I just wanted to go home and take one day at a time. Finally, I agreed to it as long as he would simply put the results in Nathan’s chart for the future. He said “No, if you don’t want to know the results, then I am not ordering the MRI.” I knew I really did need a baseline so I agreed under the conditions that he only went over the results with me. He did not like my negotiating, but he finally said OK. I was told a couple of days later that Nathan had suffered major damage in the section of the brain that controlled his left eye. It was unknown at that time if he would be blind in that eye or not. The right side of the brain controls the left side of your body and the left side of the brain controls the right side of your body. Nathan’s left side of his body is weaker than his right which is consistent with the MRI results. Shortly after you receive bad news at Brenners, you are very strategically visited by a counselor to see how you are holding up with the news. My angel showed up in the form of a very nice older nurse who was retired. She volunteered in the children’s department and probably gave me the most valuable advise that anyone has ever given me in my life. She said, “Sugar, don’t you let anyone put a patch over that baby’s eye. You make him work that eye and you stimulate it with lots of colors. You make his eye work hard and he will use that eye one day.” She ended her conversation with me by asking me to not mention her advice to any of Nathan’s doctors. I will never forget her face. After coming home from Brenners, his eye was very noticeably squinted. It looked liked a lazy eye. After the MRI results, I resigned from my job, but Dr Wells said no. I informed him of the MRI results and he said I could bring Nathan to work with me and we would take one day at a time. I think Nathan is so loving because he had about 14 mommies at work that loved on him all the time. I constantly encouraged everyone to show him objects in order to stimulate Nathan’s vision, but they did not realize there was more to it until much later. I feel guilty today because I feel like I neglected his lack of motor skills in the beginning of this journey. His arms and legs moved so in my world they were OK. I never allowed an eye patch and absolutely love it today when people tell me he has beautiful eyes. I stimulated it with lots of pictures and colors and it slowly opened up more and more each day. To this day very few people notice any deficiency in that eye unless they are trained in working with special needs kids. Everyone here in China keeps telling us Nathan looks different and we have figured out it is his eye. Since beginning his stem cell treatments his left eye has fully opened up as wide as his right eye. We are convinced that he has started some repair in that section of the brain. I think the eyes that were beautiful when we left the U.S. are going to be even more gorgeous upon our return. After a spinal injection of stem cells, the spinal fluid travels from the spinal column to the brain and says hello to vision first. We pray some of the stem cells keep on traveling to the speech, gross and fine motor skills sections also. We know it is a gamble, but it is one we are willing to take. For us, small improvements are better than none at all.
We love getting emails and blog comments from you guys!! It makes us feel connected to HOME. Thanks to all who have sent us messages. Nathan’s blog has been forwarded all across the U.S. Everyone keeps asking if that is OK with us and it is perfectly fine. I see that as being more prayers for Nathan. There have been numerous questions about Ken’s current ankle condition. It is slowly going down in size. He and Nathan were both on therapy tables side by side today while I took pictures. Ken was having acupuncture again while Nathan was having electric sound waves. A wonderful new friend from Brazil, Camila, was reading to Nathan for me. Below are some pictures for you to enjoy. Please continue to keep us all in your prayers!
6 comments September 4th, 2009
