We returned Monday night from our incredible vacation. To be honest this past week we have spent absorbing the events of the week before. When we left Ohio we could not have imagined anything comparing to that experience but Wisconsin was so amazing in it’s own right. So many things have changed for Sophia. Just last year we took the same trip to see Dr Schroth in Madison. We had to break up the drive and stop every 5 hours or so because it was tough on Sophia. We would see her become irritable and needed a treatment so we would just grab the nearest hotel for the night. This trip however, since the tracheostomy, Sophia seems to tolerate so much more. We drove 10 hours from Columbus Ohio to Lancaster Wisconsin and Sophia did well the entire time. I think Jackson was following the lead of his big sister and did not complain once. We arrived in Wisconsin around 8 PM Monday night and Katy Pitzen came over to greet us at the hotel. I was so thankful to see her and we started to catch up on things as she was grabbing bags and helping us to unpack. We called in a Pizza delivery for dinner (huge mistake for a New Yorker lol) and settled in for the Night. Katy invited us over her house the next day so Avery and Sophia could see each other. Avery would have her physical therapist there and she was interested in meeting Sophia.
Tuesday afternoon we took the drive over to Katy’s house and the girls were reunited! Sophia and Avery were so excited to see one another. Avery was in her leg slings and showing off for Sophia. We watched her therapist work with Avery and learned new things to try with Sophia and shared some ideas with her of what our therapist does for Sophia back home. Katy brought over a red pipe cleaner shaped into a heart and put it on Sophia’s finger. Immediately Sophia started waving her finger in excitement. Avery was so nice to lend Sophia her leg slings and Sophia had to show off her leg movement as well. Right away Catherine and I could tell that Sophia was extremely motivated to interact in the presence of Avery. As the girls were playing……. we were able to catch up on things. A couple of hours later the doorbell rang and it was Miss Kendra with her parents Kristin and Chris. It became a party right away for the girls and Kendra was so interested in the “baby” Jackson. It was so cute to watch her share with Jackson. Avery’s dad Steve came home from work and we all had such a good time. Chris cooked up some great kebabs and it just felt like we were all one big family. The girls hung out and played for a couple of hours before they all started to get tired. Avery finally fell asleep and we all said our goodbyes. Later on Katy called me to say that when Avery woke up she was not happy……….she was upset the girls had left!
Wednesday Sophia was absolutely pooped. Since leaving for our trip we had taken her out every day and she just needed a day to rest. Catherine, Sophia and Jackson stayed at the hotel and I got to the fairgrounds late to help Katy, Kristin and the family set up for Saturday’s event. They really needed no help from me and had everything under control. The place looked great and everything was extremely organized.
Thursday there was a festival in town and the Pitzen’s had set up a booth for Saturday’s event. On the way to the festival we ran into beautiful Arianah and her parents Keith and Cassandra Martin and as we were getting ready to say hello, Miss Stella Bella from Pella pulled in. It was so nice to see Stella and her family again. Sarah, Travis, Treyton and Sayer all hopped out from their van. We had not seen the Turnbull family since 2009 which is way too long! We were all so happy to see each other……the girls were so excited and could not wait to hang out. The Martin family and ours went up to the festival while the Turnbull family unpacked and got situated. The festival was so nice….there was a live quartet playing classical music with various booths and stands set up along the perimeter. There were rows of seats set up for all of the residents in the middle. We went over to Avery’s booth and I saw Katy in the distance…….she was at another booth and Sophia wanted to go see Avery. We went over and Katy introduced me to my first “Walking Taco”! As Sophia and Avery were saying hello I had to try this concoction. It was essentially a bag of corn chips with seasoned taco meat with lettuce, tomato, cheese and hot sauce. They were a new item at this years festival and Katy informed me they would be having them at Avery’s Race. After the festival we all went to Dolittles a local restaurant were all the kids had a chance to hang out and the parents were able to talk. The Turnbull family met up with us there and said Stella was so upset Sophia and Ari had left! The girls were inseparable. There was so much excitement about the Gene Therapy Program. The parents had so many good questions and I tried to answer to the best of my abilities. We all had fun and I had a chance to try a Spotted Cow….A local brew that came highly recommended from friends back home in NY. It was hard but I managed to stick to just 1.
Friday: This was a very busy day so many families were coming in to the hotel. Katy had made baskets for each family with all sorts of goodies which included cheese curds. While Katy was setting up for the family swap meet I was gaining access to all of the family hotel rooms to place their baskets on the right beds. It was just one of the many fine details Katy had thought of and was such a nice touch. We headed up to the swap meet and met all of the families, took so many pictures and had so many great conversations. I really enjoyed talking to families both who had recently became part of the community and those who had been around for years. There were a total of 19 SMA families there and Sophia was just loving it all. After the supply exchange the Pitzen family had set up a dinner for the families which included lots of yummy desserts!
After the meet and greet we headed back to the hotel. Dr. Kaspar was just getting in to the hotel and was so nice to come down to the lobby to meet all of the families. We headed back up to Dolittles and a few of the families came out. For me this was a treat…….the families were able to meet Dr Kaspar on a personal level and could answer many of the questions the families had on this exciting program. The questions came in one after the other as I tried to stick to my rule of 1. I had known Dr. Kaspar for sometime but for many of these families it was their first chance to meet him. At the end of the night so many of the families were impressed at how genuine this researcher was. He was fielding many many questions and there was no pause. There was no thinking about the answers, they just flowed as easy as the questions. I know that night many of the parents felt honored to have someone like Dr. Kaspar working on a potential therapy for our kids.
Saturday we headed up to Avery’s Race. As we pulled up we saw Katy had reserved spots at the front for each and every family. Each family had a sign personalized with their child’s names. As we were unloading you could see the outdoor carnival. There were games of chance for the kids and couple of bouncy houses set up. There was a face painting booth and the kids had a chance to design their own lip gloss! The activities were endless.
We moved indoors to the air conditioned area where there were tons of raffle items, auction items on display and a food stand. Dr. Kaspar was in attendance as well as Dr. Schroth. While we were eating, Sophia and Stella parked next to each other and Stella shared her movie with Sophia. The two girls would not stop cooing at each other…..it was precious. Shortly after lunch we all left for the walk. It was about a mile journey to where the duck race was. We all lined up along the bank of the stream and the local fire department helped out. Sophia was really into the duck race. Over 900 ducks were involved and she really loved to watch them go! The winners were pulled and Avery kept them hidden from everyone as we made our way back up to the fair grounds. When we got back there was a pie eating contest for the kids and then the winners were announced. There were some speeches given about SMA. It was really nice to see so many families but to also see an entire town come out in support of our kids. The auction started and I knew I was in trouble……Catherine fell in love with a chest and told me I had to get it for Sophia. The name of the item was a “Hope Chest” and I knew there were no options. After some excitement Sophia had her present and I had to find a way to get this chest home Thankfully Keith Martin figured out how to get the rear bench to lay flat in our van.
After the event Katy invited all the families back to the fairgrounds that night for another dinner. By the time we arrived all of the families had formed a seated circle around Dr. Kaspar and Dr Schroth. It was so great to see the interaction. At this event Dr. Schroth and Dr Kaspar really got to know each other. They had met briefly prior to this event but never had a good chance to get to know one another. Many of the parents were hopefully for a collaboration in the future for these 2 highly regarded members of the SMA community. These parents were able to get answers to their questions and we all felt a renewed sense of optimism for the coming year. We all had dinner and dessert and the bean toss competition began. I had to reserve my arm for next time…..the competition was stiff! We hung out pretty late and were sad to say our goodbyes. We would be heading home the next day. It was such an incredible trip for us and we had such a great time being surrounded by good people. This was a great experience for Sophia hanging out with so many kids just like her. We have noticed such a huge change in Sophia since returning home. She has become so talkative and we know she misses her friends. We are looking forward to next year and cannot wait to see everyone again! This years event raised $20,000 towards The 200 commitments and Dr Kaspar’s Gene Therapy Program! We would like to thank all of the families for coming and a huge thank you to the Pitzen family for putting on such an amazing event!