Monday, March 3, 2008


Riley has been falling down a lot. I had really hoped she would stay walking and I'm afraid we're losing it. My mom said something about her falling a couple of times Saturday morning but she seemed ok Saturday night so I thought it was a fluke. Sunday she was really shaky and fell and hit her head pretty good. I was hoping it was because she was so tired from not sleeping the night before but she's the same today. Now we're too scared to even have her walk so I'm afraid she's not getting the practice she needs. I put a bike helmet on her and let her walk and she did for a good 10 minutes or so and then fell straight back again. Poor thing.

I called a pediatric therapy group in the next town over but they need a doctor's order so I'll call her doctor tomorrow and see what they can do. I feel like she needs to be seen by a physical therapist and her PT doesn't come back until next Friday. I can't wait that long.


Brooklyn said...

It was so nice to talk with you last night. I hope I did not do too much talking. I felt like after I hung up that I had talked WAY too much.
Riley looks like a cutie pie! I truly hate that you are going through such a tough time with Rett Syndrome. Like I saaid last are going through the rough time now. The HAPPY Riley is in there, your little girl will be back. I remember during regression that I just wanted my baby back. Today Brooklyn is such a happy, sweet little girl. We have so much hope for her future.
PLEASE call me or email me anytime. We "rett moms" need each other for support, laughter, and understanding.
Give Riley BIG hugs from her new friends in Indiana!

Grammy said...

Erin..I also talked to you yesterday. I am Grammy (Kelly's mom, Suzy). I stay with Brooklyn m-f. I am a retired elem. school teacher and watching Brooklyn is without a doubt, the BEST job I've ever had! If you ever have any questions, call Kelly's phone during the day or e-mail me at Please know we are here for you. It will get better. The regression seems so bad, but she will get through it and the old Riley will be back. We didn't know at the time why Brooklyn was so angry. She is now the sweet little girl we knew before. I am anxious to meet you at the conference in May. Tell your mom she can contact me as well. We Grammys love to talk about our girls!!!