So last week I emailed the labs at University of Chicago and a sweet girl there said she will do her best to keep me informed. I just got an email from her that said this:
“We have found something in the CDKL5 gene in your daughter that may possibly be the cause of her problems. We are still conducting studies on you and your husband. When those are complete, in the next 1-2 weeks, we will issue a new report to your physician. I’m sorry for the delay, but we should have some news for you soon”
So that is where we are at. I guess Lily’s issues are within the CDKL5 gene and we just don’t know what they found. Looks like we have another week or two to hear about Andrew and myself. Just goes to show, it never hurts to ask.
Continued prayers would be appreciated as we wait for these results.