Wednesday, November 19, 2008

Still nada

Still sitting here on pins and needles. I'd say God is trying to teach me patience, but I think waiting 6 years for a dx is pretty much a test in patience in itself. I guess on the scale of things 6 years vs. 3 weeks I really shouldn't complain, but I am going batty here waiting.
Things are fine otherwise. Girls are good and healthy. Andi and I had a great time in Colorado, the weather was perfect and it was fun seeing my sister in law preggers. We are less than a week apart. So cool!
There isn't much else to report. I will update when we hear something. I have been on the phone and all I hear is "nothing yet."


Caitlyn said...

We are sitting on pins and needles with you! Have they put a name to the gene at all? I am just now hearing they are in the early stages of discovering a gene mutation similar to the CDLK5 and the MeCP2. It's called FOXG1, I was just wondering if this is the one they are looking at for Lily.

Kim said...

hummm... I don't know. I know when I asked our Dr. he said it was not on CDKL5, but when I emailed U of Chicago she said they found something ON CDKL5 but didn't know what it was. I am so confused. I am hoping for an answer soon!!!

Shannon said...

We are getting ready to undergo our second set of genetic testing tomorrow...something about a newer, more in depth test.

I am not looking forward to the 3 month wait for results on it.

Do you ever feel like all you do is wait, wait, wait...only to really get nowhere?? lol

I am keeping you all in my thoughts.

btw...I replied to your comment about the "glorified bumbo" on Gage's page.

Take care lady!!

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