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 […]
Baby Knox
In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.
“Variations”
On The Inside
One day, it’s a happy post. The next day, a sorrowful one. What can I say? It’s my blog and I can cry if I want to. On the inside, I’m crying quite a bit. This drawing isn’t supposed to be pretty. I was only trying to show how it feels when I […]
Knox at 9 months
You knew I had to put up a picture of Knox for the letter “K” ! The little dude is still not eating on his own. I offer him the juiciest apples and sweetest pears, and he’ll eat a few bites for us. But not enough to get off the feeding […]
Hope Deferred
“Hope deferred makes the heart sick…” Proverbs 13:12
Genetic Mutations
Genetic Mutations. Ugly sounding words, but they are very much on my mind these days as we await our son’t DNA test results. What are they? I’ve been reading a lot about genetics lately, as you can imagine. I don’t understand everything, but I’ve learned this much: A hereditary mutation, which seems […]
Rare Disorder II
Yep, still in the hospital with baby boy. I had to bow out of the “A to Z” challenge for obvious reasons. This is one of those times when art is the only way I can express what’s on my heart.
“Rare Disorder”
I’ve been in the hospital with my baby son for 5 days. He stopped eating and they suspect he has a very rare genetic disorder…. And I don’t know what else to say.
A Giraffe and Some Elephants
Have you seen this tiny giraffe baby teether from France? She is quite famous across the pond. Baby K. got his very own little “Sophie la girafe” yesterday–ooh-lala. We enjoyed watching the video of how Sophie is made, and watching K. try to eat her hooves off. Speaking of giraffes, I […]