still no diagnosis, which is disappointing and discouraging

Yesterday the geneticist called and said she got in all the results of Cailyn's tests from a few weeks ago, including the bloodwork, the MRI and spinal tap.

There were a lot of bad things they were looking for, none of which had "cures" at this point. They were looking at blood sugar and then brain sugar levels, items with binding proteins, amino acids, metabollic disorders, lots of words I couldn't pronounce and they probably hadn't even discovered in my last biology class. They found NOTHING!

All her tests came back normal, nothing positive, no answers. The only thing they found was a slight enlargement of the ventricles in her brain, but the pressure of her spinal fluid was normal so that's not an answer either.

The last thing they'll want to do is a gene test to see if she's positive for this one epilepsy gene. They tested for one gene when she was 10 days old but apparently this second gene test has only come around since then. Then she told me that 50% of the patients who come to the genetics clinic leave with no diagnosis. I hadn't heard that statistic before and it's really discouraging, the not knowing sucks, just name it already, it's 2009 aren't we in the age of "modern" medicine?

In more family medical news, my Dad is doing well after his surgery earlier this week, but still in the hospital. They removed a 1 inch section of the colon where they found pre-cancerous cells. My Mom said he sounds ok and is off the morphine today.

We are still lowering Cailyn's meds and it's doing wonders. She's a vibrant active girl now. If she could kick her legs all day long, she might. Her Physical Therapist noticed a big improvement. She said she's like an infant with her activity level and on her own timeline. She's still really trying to roll over and getting a little better at tummy time, even though she hates it tremendously.