photography by JCPenney
This is William's 2-year-old picture. I just had to post it, even though he looks completely different with his glasses, only a month later.
The rest of the ERG results are in. The cells in both of his retinas are affected equally and both the rods and the cones are affected (color vision and black/white vision). Deterioration is a little worse than we originally thought, as the doctor is now saying somewhere between 30-60%. He is hopeful that the rate of deterioration will stable out now and the deterioration will not happen as drastically as it did in the past 4-7 months. We will continue to pray for his vision.
Based off of the ERG, we do have several things to start looking at that cause deafness, hypotonia, imbalance, lung dysfunction, and retinal degeneration. Some of them seem less likely than others, but the one that stands out to me and seems to fit all of his symptoms is a retinal phenotype psuedo-Usher Disease associated with Retinitis Pigmentosa, presented in the GTPA regulator gene. We have a couple of doctors still speaking with each other to figure out some other things, but we will have a definite direction next week. I am so glad they are working together to try to keep William's testing to a minimum.
William is getting a walker next week. We are hopeful that this will help him to begin to learn to get around more independently.
I found this quote while reading recently. I did not write down where I found it exactly, but it has been a sweet reminder on our white board.
"Peace affects our everyday living. It is not for a season, it is a way of life."
"And let the peace of God rule in your hearts, to the which also ye are called…and be ye thankful.” 1 Corinthians 13:5