Wednesday, March 12, 2008

called the neuro

Ok I called Riley's neurologist and she'll get an EEG done sometime in the near future. She had lots of slumping over episodes yesterday and none today that I've seen. It comes and goes but it'll still be nice to know what they are.

Her walking is also coming and going and it really sucks. Sunday morning she was walking all over the place (with us following close behind) and then Sunday afternoon and pretty much all the time since she just freezes when we stand her up and won't move. She'll walk if we're holding her hands but that's it. Except for once today when my mom brought her upstairs and set her down, she took off. But that's been it.

This appointment with Dr. Percy can't come fast enough. I want some answers to my questions from someone who knows more than what her neurologist seems to know.

Riley is CRABBY right now and it's making me crabby. I think it's early to bed tonight.

One picture - not the clearest but we went to the aquarium yesterday and Riley LOVED it! She sat right up and was just staring at the fish. Maybe we should build a house and make one of her walls a big fish tank. Ha, I wish.


designwaitress said...

I'm thinking a lot about you guys!
Hang in there. You'll get some answers soon. Until then just take it one day at a time.
Regarding the fish tank wall, maybe I could get you onto Extreme Home Makeover . . . they always seem to do crazy things like that! :)

Avery said...

erin, when is your appt with dr. percy? We go in May. We will be getting our duplication/deletion test results about a week before we go.

Avery said...

erin, we go a week later. Our appt is the 8th--good, you can tell me what to expect!

Brooklyn said...

Brooklyn LOVES the aquarium too. I have heard of other Rett moms that get fish tanks for their daughter's room - something for them to watch if they wake up in the middle of the night and can't relax. Maybe not a bad idea! Probably not an entire wall (which would be AWESOME by the way) but a tank might do the trick!