Monday, December 22, 2008


I just realized the last picture I took of Riley was on December 5th when we were going to get our tree. Oops! I will have to make sure I take lots on Christmas Eve and morning!

We have been soooo busy lately and it's making me tired and crabby, which I don't like. I usually like the busy-ness of the holiday season but this year I feel like I'm moving a million miles an hour in different directions constantly. It's making me sad that the time is passing so quickly and Christmas Day is almost here and before I know it it'll be over.

Anyway, Riley is doing pretty well. She has been fairly grumpy and hasn't eaten much for the last couple days so I wondered if she was getting sick but at lunch today she ate a billion grapes and now she's happy as can be.

So I guess she just wanted grapes. :)

Wednesday, December 10, 2008

long overdue

I haven't been very good about blogging lately. Mostly because some things were sort of getting to me and I needed to take a break. But I've talked to people and I know they use this blog to stay updated so I will try to be better about posting more often!

I've also been feeling sort of blue the last few days. I made a batch of Christmas cookies the other day and was remembering when I made the same cookies last year. Riley was sitting at the kitchen table and I put a snack I knew she loved on the table in front of her and didn't understand why she just kept crying and wouldn't pick it up to eat it, yet she'd eat it when I fed it to her. It was the first time I realized she could no longer use her hands to feed herself, and what drove me to later call her neurologist and make an appointment which led to her Rett Syndrome diagnosis.

So while I love this time of year, this year it's making me feel a little sad. But on the upside I am glad to have a diagnosis and to not be constantly wondering what is going on with my little girl!

I also got a little pick-me-up today when a letter came in the mail that Dr. Percy sent to Riley's pediatrician. It's always nice to hear good things about your daughter! I won't write out all the GI and seizure medication details he went through, but the second half of the letter reads:

"We completed our clinical inventory and noted her to be alert and interactive. She was quite appropriate. She is not using her hands for any functional activities, but continues to ambulate easily. Her back is straight and she has gained a bit of weight such that her BMI is now at the 10th percentile having been somewhat below that prior to this visit."

No major progress or anything but hey, no more regression either! I'll take it!