Hi everyone - we had a very successful trip to Chicago. We arrived at the airport Monday morning and found our flight delayed 75 minutes. Sarah actually did better with waiting it gave her time to unwind. Her first plane trip was awesome. She sat by the window and looked out. We were a bit worried that we would have to circle Chicago because President Obama was arriving at the same time but fortunately we beat them in by 5 minutes. Our next adventure was collecting the luggage and getting a cab. Our first cab was a completely handicapped accessible van so I didn't have to take the wheelchair apart and fold it. It was one of the best cab rides I have ever had. We arrived at the Westin Hotel and Sarah found out that I had booked an American Girl "Package" which included a bed for her doll with turn down service, a viewing of the Kit movie, a recorded bedtime story and a sundae for her and her doll. Yvonne - the woman who checked us in - found the ideal room that overlooked the American Girl Place. Sarah was so happy she cried and cried. Right away we went to American Girl - we had lunch at the Cafe and Sarah's doll had a spa treatment. Of course there was shopping. We walked to Lake Michigan and had dinner at Cheesecake factory and then relaxed and watched a movie. The next morning it was early in the cab and off to Children's Memorial for the testing. Sarah did extremely well - she was very cooperative and we were able to complete everything earlier than scheduled. I think it helped that almost all of the medical records had made it there and were reviewed. Sarah didn't care for the blood work but still did great! Afterward we retuned to the hotel for some rest (after another stop at the American Girl store). We headed to Rainforest Cafe for dinner and then early to bed. Wednesday we were up early had breakfast and headed to the Sears tower. Our friend Father Steve was in Chicago for a few hours on a train layover and met us there. We toured the tower. Unfortunately the visibility was poor. After that we walked around Chicago, had pizza for lunch, said goodbye to Father Steve and headed back to the hotel to check out and head to the airport. We arrived at the airport 4 hours early and tried to fly stand by to get home earlier - that didn't work out so we relaxed, read and had snacks. The flight home was also good - a little bit more turbulence due to rain storms. Since we waited so long I think everyone on the flight knew that Sarah wanted to see her daddy. It was exciting to get off the plane and see Daddy and Amanda and they brought us flowers. We made it home for a late homecooked dinner and crashed to bed early! This morning Sarah has a dentist appointment which she totally didn't look forward to but all in all we have had a great few days and hope that our time spent in Chicago will help Biomarin (the drug company) to develop the medication needed to treat Morquio. Thanks for the continued thoughts and prayers, much love, Ruth