Well, we're back from Chicago! Every 6 months we head to Rush University Medical Center in downtown Chicago to participate in a Natural History Study for Rett Syndrome. We've gone and stayed a night before, stay the weekend with all 3 kids (and an aunt and uncle for extra hands) but this time we decided to stay on a strict budget and drive there and back in 1 day! Needless to say we were less than thrilled to head out this time but we did anyways. The trip started out a little rocky when we remembered that our AC didn't work and temperatures were going into the 80's! We spent 2 hot hours on the road when we decided to turn off and grab some fast food for lunch. We pulled into BK just as a storm hit - before we could even order the power went out - sooooo back on the road. At this point things started looking up, the storm was cooling off the temperatures so we were a bit more comfortable in the car. That is until we hit downtown Chicago with stop and go traffic and the sun came back out in full force. We rolled into Rush just about 30 minutes late and dripping with sweat! We had a change of clothes for Annie so we got her all cooled down and changed! After our less than comfortable 5 hour drive into Chicago we were thrilled to get up to the clinic and find Kelly and Brooklyn!! We have been following their blog for awhile and have become friends over the Internet, it was so wonderful to meet them in person!! Thanks Kelly for sticking around for us!! Brooklyn was even more adorable in person! We got just a few quick minutes to chat and then we ready to see the dietitian and get Annie's consult rolling. All went well. We were so thrilled to see Dr. Percy and Jane! Annie was all smiles and giggles and was showing off how strong she is by standing up for almost the entire visit (which was probably nice after the long ride in). Dr. Percy put our minds at ease by checking out our EKG and confirming that it was normal - no Long QT!!!! We do, however, have some work to do with beefing up our tiny Annie (ugg, even with the g-tube she's too tiny!) and pumping more calcium and Vitamin D into her fragile little bones - we've been on Calcium and Vit. D supps for about a year and Annie's bones are still showing signs of thinning. All in all we had a wonderful time and are so happy that we made the trip. We got home at about midnight - Annie did amazing!! She's always so excited when it's just her and her parents - like an only child. She got to choose all the movies on the way up and back and she slept like a champ!
Brooklyn and Annie - you can tell Annie is holding her breath and Brooklyn is hyperventilating! Little angels!
Annie with Dr. Percy!
Annie with Miss Jane!
So sleepy on the way home!