Trip to St. Louis

Graycen had her appointment with Dr. Brunstrom (neurologist) at Children's in St. Louis today. This was a follow-up appointment, since we had not seen her since Graycen had her surgery. She is always encouraging, and has lots of ideas and advice. Today was no different. My biggest frustration has been getting Graycen motivated to walk. She would rather crawl, as it takes less effort. Due to the fact that she is 3, it is hard to MAKE her do anything without a major meltdown. So now I have some new ideas, and Dr's permission to use any form of bribery that works! I will have to be pulling out all the stops.

Friday's photo shoot got postponed. Eliana's mama was sick, so we are going to reschedule soon. I took the day off from Graycen's therapy, and had a nice morning at home. I was going to try and go down to 2 days a week going to therapy, but Dr. Brunstrom thinks we need to actually move back up to 4 times a week. I guess I just need to accept being permanently in my van for a few more months. I do know that this time will pass, so I should to look to the fact that this is for Graycen's future...a future that includes walking independently someday.

As I type this I am in a hotel room in St. Louis. Gavin, Graycen & I came up Sunday afternoon so we would be here for our 9:15am appointment this morning. It was a good thing we did that because we got hit with an unexpected ice storm at our house overnight/this morning. We would not have made it if we'd left this morning. We decided to stay put for tonight, too, hoping that the freezing rain will stop and the roads will be okay tomorrow by checkout time.

Last night we had the opportunity to meet up with 2 families that came to St. Louis to see Dr. Park that did Graycen's selective dorsal rhizotomy surgery. One family from Seattle was here with their 8 year old daughter to have the surgery tomorrow at noon. The other is from near San Francisco to meet Dr. Park for an evaluation to see if it is something they want to pursue for their 4 year old daughter. We all met online through a CP yahoo group, and all "happened" to be having appointments today at St. Louis Children's Hospital. It was great to meet them in person and let them see how Graycen is after the surgery. I hope I was able to calm some of their fears and encourage them with Graycen's success. I have met so many people that I would never have come into contact without Graycen and her CP. It is kind of neat to see how this is all working out.

Hope to be home tomorrow night and have access to some pictures to post.