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!


Brooklyn said...

I love that paragraph about Riley to your doctor, it is always nice to get a "good report!" She is such a sweetheart Erin - I am SO glad I got to meet all of your girls in Chicago this spring - you all are an amazing family! There are always going to be sad times but know you have friends (and other Rett moms) here WHENEVER YOU NEED US!!!
Big Hugs from Indiana!

Karlie Grace said...

Hey Erin, i'm also so glad i got to meet you and your sweet family at the conference. I have the cutest pic of Riley and Karlie i'd like to share with you on my page. The letter from Dr. Percy was great and not seeing anymore regression is fabulous news! Rett is a hard road to travel for all of us, mainly our girls, but i'm thankful we're not walking it alone. Hugs!