I love Knox so much. Losing him doesn’t seem possible… He had his first ear infection last week but he’s feeling better now. His intake went critically low, but he managed to stay hydrated and has managed to take in almost 11 ounces of Pediasure today on his own. I […]
Tag: CS2
Knox turns 15 months
My little angel, Knox, turned 15 months last week. Yep, his hair is still as crazy as ever! We celebrated by driving to Morgan’s Wonderland in San Antonio. While we were there, we had the opportunity to meet an adorable little girl named Grace. Aren’t they sweet? They aren’t related, […]
“Lady in a Marsh” Sketch
Love
This is one of my favorite pictures because it’s a picture of LOVE. Knox, on the right, is my special little angel with Cockayne Syndrome. Currently, there are about a dozen children with his type of CS in the United States. His big brother adores him and wants his picture […]
Butterflies of Denmark
I’ve continued reading about other families who have had children with Cockayne Syndrome. All the stories are hard to read and I always cry. But ignorance is not bliss with this disease. I need to know what to expect so that we can give Knox the best care that we can while […]
All The Words You Said
EAT THEM. Yes, YOU. Eat them all. You said,”It’s not God’s will for your baby to be sick.” You said, “Knox will thrive and grow, in Jesus’ name.” You even said God would give him new DNA. You said I needed to CLAIM the promises that are available in Christ *in order […]
Now We Know
Now we know what’s wrong with baby Knox. His DNA results came back and he has Cockayne Syndrome (Type II). It is a premature aging condition. It’s degenerative and terminal; currently, there are no treatment options available. I knew it was going to be something serious, but deep down, I had still hoped we […]