Tuesday, November 4, 2008

Small Update

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.

3 comments:

Kay said...

Wow Kim! Nothing like this to leave your head spinning. I hope the wait isn't too agonizing. Welcome back to Yahoo CDKL5...Kay

Reagan Leigh said...

They ran multiple Rett tests on Reagan because she does fit many of the symptoms...but nothing came back positive. Isn't it interesting (or frustrating) that you're just now finding out more about tests that were done years ago?!?! I'm definitely curious to see what they find out!

Shannon said...

you all are definitely in my prayers.
xoxo

p.s. i nominated you for a fun lil' blog award.

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