I will be the first to admit that my husband is the go-getter, get stuff done one of the family. A few months ago I called him on my lunch break and he was talking a mile a minute. He had found a video clip of Robotics Therapy being used for children with Cerebral Palsy through MIT. He couldn't stop talking about how excited he was (he is a big Sci Fi nerd, so this was right up his alley). Pretty soon I had the fever too! The next day he decided to write Hermano Igo Krebs who was the head of robotics therapy research. I thought he was bold and would never hear back from him. Well we learned that day to NEVER feel like you are being too bold. He got back to him RIGHT AWAY. Literally the SAME day! He told us that Chicago did not currently have the robotics therapy program, but he had colleagues in Indianapolis who teamed up with Riley's and Methodist and they opened a new facility in September 2012. Riley's is only bout 2 hours away from us. This could not be better news! The only hiccup was he needed to be 4. My husband contacted them anyway and spoke with Ryan Cardin (Kreb's colleague) and he learned more about the program. They took our information and we waited. A few weeks before his 4th birthday they called us and reminded us that we were wanting to come in. They told us to get a prescription from our pediatrician. We called her and they faxed to Indy without question. We really have an amazing pediatrician, Dr. Nancy Pudlo, love her! They called us back and made an appointment for the middle of July. (We just got back)
We decided to go the night before because our appointment was bright and early at 8:30 am. We booked a hotel just south of the city, Comfort Inn and Suites. Ummm... I would NOT recommend this place! We got there and it seemed great. The front desk lady was really nice and got us checked in at an absurdly fast rate. We got into our room and it was HUGE! The kids were so happy to be out of the car and they were all over the room. We sat down on the floor on a towel and ate Subway and life was good. We had been telling Gavin that we would go swimming when we got to the hotel. He was ready, so after dinner we started getting dressed. I was standing at the side of the bed and I looked down and was getting ready to yell at my husband for throwing a broken nail on the floor, but when I looked around they were ALL over!!!! I was DISGUSTED and wanted to VOMIT immediately. We hurried up and got into our swimsuits and Rick went straight to the front desk. They went up and vacuumed immediately, but I was already mortified and couldn't get that picture out of my mind. We played in the pool and the kids had a great time anyway. Night came and I could hardly sleep, but I fought away my disgusted fears and got a few hours. The next morning came and I was ready to pack us up and get OUT of there. We finally got on the road. Finding the facility was very easy. Since it was early there was very little wait time. We got into the room where the evaluation would happen to see if Gavin would qualify. We met a very knowledgeable PT, Angie. She chatted with us and was great with both of our kids. She finally got to the part where she needed to measure Gavin to see if he would fit in the robot. The kids need to be 21 cm from hip to knee. He was 19 cm on one side and 20 cm on the other. What a bummer! Even the slighted centimeter can cause problems. So they told us we need to wait 6 months to a year for him to grow and THEN we can get on the waiting list for the lower extremity robot. She then told us he would be a great candidate for the upper extremity arm robot. So we got on the waiting list and will probably begin in August! It is a 9 week program, 2 days a week. Unfortunately the days are not consecutive. So the nurse did some checking and Ronald McDonald house would be available to us!
We are so excited for this cutting edge technology. There are no negative side effects to this therapy. He can only get stronger, so we are feeling HOPEFUL! I will keep you posted and hopefully have some great pics to share. In the meantime, check out the video above that turned us on to this amazing therapy!
~Stacey
