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.

Mattie@6 months

a new Mattie pic--getting ready for the snow

Snow, rain and sleet... oh my

Well yesterday/last night we had a bad storm -- lots of pellets of sleet and ice. I just chipped off the car--it had a consistent sheet of ice all over it. This is a day working from home is a blessing. The Federal Govt is opening 2 hours late so that means AARP was open today too.

Here are some pics of the pups in the snow

Oh and Happy Valentine's Day

Wii had fun last night :-)

I was in Target Sunday morning and overheard a family saying "oh they sold out at 7 at Toys r us." And they were debating if they should get "it."

I piped in to the sales guy "do you have Wiis?" He said yeah one. I said I'll take it. And the family who snoozed loozed!!!!

So we hooked it up and boxed, bowled, and played baseball and tennis. Its aerobic you get your whole body into it. Like you are really boxing. I'm 5 and 0 all by KO. The bowling is fun. I'm a much better bowler on TV than in real life.

National Aquarium in Baltimore

Yesterday we made our way up to Baltimore to go to the Aquarium. Curt went with his mom when she was here at Christmas and ended up signing up for a year long membership pass. Yesterday was my first trip. Its really nice. The Coral Reef Aquarium is the very cool because they have glass all around you and you walk down a winding path in the middle of everything. We'll definitely go more often and spend time at the Inner Harbor as well.

I love getting a bath

Mattie in the tub


On another note... Curt's ears are way better.

Curtie has a boo-boo in his ear

Well its been an interesting 5 days. Curt has a very bad double ear infection that has swollen shut. He can't hear crap and is on super antibiotics, oral antibiotics and percosets. They used a little vacuum thingy to try to clean out the ears this morning and there's more bleeding.He is in a ton of pain as well. We go back to the specialist on Thursday. Fingers crossed the percoset knock him out because he can't sleep today either.

Maybe I should join the NASCAR

Last night we had Curt's belated holiday party at an indoor go-cart track. This is not your typical go-carts which go maybe 10 miles per hour and putt around. We were zipping around the track with spin outs etc. 120 laps around the track and we were in teams of 2. Here I am taking 2nd place with my partner Justin. If I wouldn't have been sent unjustly to the penalty box we had a chance for 1st. It was so much fun. I would be addicted if it weren't so terribly expensive.

Tubing

My sister was in town earlier in the week and on Tuesday we went to far western Maryland and went snow tubing at Wisk. Very much fun... I went so fast the first time that I was crying I was laughing so hard. Its super high--like 2. 5 football fields you come down and its over in a matter of seconds. Pictures from the actual tubing didn't work out so well--too dark and fast--chilly night too.


Also on Monday was mine and Curt's 2-year wedding anniversary. Its gone by so fast.