Tuesday, June 23, 2009

PT and OT

Because this diagnosis of RS is not something that can be directly treated, the biggest part of the treatment is done by way of therapy. Abby has been in PT since she was 4 months old and OT for almost 4 months now. Our PT has been a roller coaster ride. It is hard and it is bumpy but many gains have been made over a year and a half. The frustrating part is that once Abby started walking without her walker it feels like our PT has no idea what to do with her. The therapy sessions suck. We get no new exercises from week to week. I am frustrated beyond belief.

OT is going a little better. She is still very ataxic but her mouth stuffing is getting a little better. Her fine motor skills are still very delayed but that is slow going. Thankfully out OT is a great woman with a special needs child herself so when I need to vent about being frustrated she is always willing to listen. Because her kid has done OT before she gets how hard it can be to have people in and out of your house giving you a million exercises to do all day long.

I just wish there was a magic wand to be waved and make this all easier for Abby.


  1. Hello I am Cassandra, not sure if you know Sarah and or if she has told you but I have constructed a site and forum for Rhombencephalosynapsis. You can visit RoomsOfJade.com if you are interested.


  2. Hello, I am Karen. A physical therapy student who is doing some research on GLH. I was just wondering what interventions your PT have been work on and if there was a way I can contact the PT for information. Thanks again.