Rochester Trip 2009

What a whirlwind trip to NY! We left Thursday evening flying directly into Rochester arriving around 10pm. Friday morning we visited Strong Memorial Hospital for follow up with Dr Kwon, Dr Adams and Amy Vierhile, RN who are involved in different studies for Batten Disease. After lunch we visited with Dr. David Pearce and Amanda Getty at his research lab. Amanda was so patient with the boys as they asked their usual hundreds of questions. We saw many different fascinating things, but the boys were intrigued by the empty test tubes that Amanda provided……never mind the microscopes providing pictures of neurons and individual cells, the sterile hood where the mouse cells are worked with or the chamber that stores said mouse cells at 98.6 degrees F!!!!!! I guess it’s all a matter of perspective. Finally we visited the Eastman Theatre(if you are ever in Rochester this place is amazing) where we took in the boys first ever concert. The Rochester Philharmonic Orchestra hosted Don Potter headlined by Wynonna Judd. We were also fortunate enough to get passes to meet Wynonna after the show. She is such an inspiration to us and we really appreciated her taking the time to talk with us for a few minutes. Brandon and Jeremy each colored a picture for her and Mrs. Bunn helped type out a sentence in Braille on each of the pictures. The boys had a GREAT time and really enjoyed the show, each agreed that their favorite song was Wy’s version of “Burning Love.” Her rendition of “Ava Maria” gave me goosebumps, still does just typing it. The trip home on Saturday was interesting. We got to the airport early to eat breakfast there but when we checked in our flight to Washington was going to be delayed by several hours due to weather, the agent checked and there was a flight leaving in a few minutes through Philadelphia that would connect to Charlotte. So we made a mad dash, until we got to the security checkpoint. Seems like someone in front of us in the line that I picked(Wendy was mad because she wanted to go to a different line) lost their boarding pass in the X-ray machine so we finally made it to the gate just as they were about to close the door. Turns out this was a little puddle jumper and we actually had to go down the steps to the concrete and board from outside rather than across the jetway like Brandon is used to. He did well and we were on our way. As we get to Philadelphia we realize that we are landing in Concourse F and we have about 25 minutes to make it to Concourse B for the next flight. Keep in mind that it is now lunchtime and we haven’t eaten breakfast yet so Wendy takes her boarding pass and says go ahead and board and she stopped to get us something to eat on the plane. She ends up getting pretzels and milkshakes for us and the boys dig in as the crew is making their final preparations for departure. I look across the aisle just in time to see Jeremy accidentally knock over Wendy’s large milkshake onto the floor or should I say her leg, wool jacket, purse and the floor. Needless to say Wendy was happy to get home after that morning!!!!
We did get home about 3 hours earlier than we were supposed to arrive, but it was struggle. Despite the travel woes going home it was a fantastic trip.


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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