Thursday, February 19, 2009

one year


One year ago today we got the call confirming Riley has Rett Syndrome. This hasn't even been a hard day to come to - it was harder for me the year before we got her diagnosis, not knowing what was going on. As much as I didn't want to hear she had Rett Syndrome I was somewhat relieved to have an explanation and be able to move forward.
I wish I could say she was walking as well as she was a year ago, but hopefully we can strengthen her little legs up and get back to that point. Preschool is wonderful for her and more and more she is learning to communicate with us using her eyes.
I am so grateful for the friends I've made along the way of our journey with Rett Syndrome, and I will continue to fight for a cure for this disease!

5 comments:

Brooklyn said...

What a sweet picture!
I know....not an annivesary you want to celebrate really but thinking that you have made it through this tough year is awesome - I am so glad to have met you (and Riley!) and become friends, you mean so much to me! THinking about you and praying for you on this special day...BIG HUGS!

Laurie said...

Hi - Riley is adorable. I am also a mom of a Rett girl in Winter Garden, FL. Bree just turned 13 and is doing pretty well. A month ago she started walking again unassisted. She usually uses a walker, but does not now. Bree's daddy owns a bike shop for the special needs community here in town. Bree has been riding bikes with her dad since she was 6 months old. He has a bike set-up for her that makes her pedal (she will not do this on her own). Her legs are very strong from doing this. Check out the website at www.adaptivecycling.net. Maybe this would be good for Riley and keep her walking.

designwaitress said...

And she's as beautiful as ever!

Avery said...

she is too sweet! I think that our 1 year anniversary will come without much saddness. I have possibly the sweetest baby girl ever! :)

Karlie Grace said...

Since Rett chose our families, i agree that it's MUCH better to have a confirmed diagnosis. Not knowing was torture. Hopefully Riley's walking will continue to get better. Karlie went through a tough year or so, where she fell very easily. She toe walks almost constantly now but she is much more steady with her balance. I was doing laundry the other day and she actually walked on top of the dirty clothes! This would have been impossible a year ago!