CDPX1

The genetics test came back confirming the type of Chondrodysplasia Punctata that Chase has. It is the x-linked recessive type (CDPX1), so now I will get tested to see if I'm a carrier(x chromosome) or if Chase had a spontaneous gene mutation. If I'm a carrier, then we have a 50% chance of having another child with this gene defect. If we were to have a girl, she would have a 50% chance of being a carrier, and if it's a boy, he'd have a 50% chance of having the defect like Chase.
We met with the doctors and others to discuss the plan. Chase will have the g-tube placement next week. We're still trying to decide about the fundo, but will likely go with that as well. We don't like the idea of another surgery, but it sounds like this is what he needs. And having these procedures will help bring him home sooner. They said recovery after the surgery is about a week and then he could come home if everything else is in place (home nursing). Insurance keeps rejecting our claim for home nursing, and we keep appealing it, so hopefully they will work something out soon so we don't have to wait in the hospital until it gets approveed.
Even with all the struggles, and ups and downs, we feel so blessed. Sure, there are times we wish Chase was "normal" and was living a "normal" life of an eleven week old. But then I see babies that look worse off than Chase, and hear stories of little ones that don't even make it, and I thank God for each day with Chase. Chase has taught me more about life in the last 3 months, than I've learned in my total 30 years.

Don't copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God's will for you, which is good and pleasing and perfect.
~ Romans 12:2, NLT