Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

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.”

3 thoughts on “Still nada

  1. Caitlyn says:

    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.

  2. Kim says:

    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!!!

  3. Shannon says:

    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?? lolI 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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