Hello everyone!

It has been quite some time since we have sent an Oscar-Go update. Please know you have certainly been on our minds. We thought we could wait until all the painting projects were finished and we had art hanging on the walls to send an update that would include photos of the new house, but clearly that’s going to take more time than we expected! We don’t want to keep you in the dark any longer. So, finally we’ve posted a few photos of the house (and of Oscar!) on the gallery page. We are thankful every day for this house and everything you all did to help make our move possible.

Oscar continues to do well. He recently had his routine 6-month follow up with both the neurologist & pulmonologist: he is in good health. He continues to work hard in PT and OT. And he continues to be a stubborn two-year-old who often attempts to talk his way out of the activities he doesn’t want to do! He recently acquired his own mobile stander, which allows him to propel himself while in a standing position. Soon he’ll also have his own gait trainer, which will allow his body to go through the mechanics of walking while being fully supported. Two other new acquisitions for Oscar are a potty chair and “big boy” bed (a mattress on the floor, for now). He has made good use of both so far and we will continue working toward full-time use of each!

Transition is on the horizon! Oscar will be starting preschool in the fall, 5 mornings a week. We are not ready, though we suspect that he’ll do just fine. We’ll be leaving Early Intervention (the county-based organization that has been providing his services), and Daystar (daycare for medically fragile babies where Oscar has been attending two days a week) kicking and screaming. Oscar, and our whole family, has been taken such good care of. Oscar will be attending Rochester Childfirst Network for preschool and they, along with Brighton Central Schools (our home school district), and SKIP of NY (our service coordination agency) will manage all his services. Our interactions with RCN, so far, have been nothing short of wonderful, so we are feeling confident that Oscar will continue to be well-taken care of.

In May, we traveled to the Baltimore/DC area for a great week away visiting family and friends. While in DC, we attended the Fight SMA conference, a much smaller conference than the Families of SMA conference we attended in CA last year, but equally as valuable. Many of the same researchers were there and it was wonderful for Oscar to meet some other friends in “Go-gahs” (Oscar’s word for “wheelchair”). We reminisced about how fearfully we approached the foreign land of last year’s conference and marveled at how much more at home we feel within the SMA community now (indeed, it is a community). Nonetheless, we are still adjusting to this new normal we are living. It can be pretty exhausting keeping up with Oscar’s appointments and therapy schedule. We often feel like we’re behind the eight-ball, trying to incorporate all we learn from PT & OT into Oscar’s daily schedule. There never seems to be enough time for everything. Yet, Oscar is thriving.

We are excited to say that we’ll be participating in the 8th Annual SMArt Walk for a Cure, a benefit for the western New York chapter of FSMA on August 6 at Beaver Island State Park, just outside of Buffalo, NY. We’d like to invite you to be part of Team Oscar-Go and walk with us. To register, visit our walk-n-roll home page http://www.fsma.org/LWC/teamoscargo and click on the “Join My Team” link at the bottom of the page. If you’re not able to join us on August 6, and you’d like to make a donation, you can do so through the above-mentioned link or by contacting us directly, as well.

Please don’t hesitate to contact us regarding the walk-n-roll, or anything else, at info@oscar-go.org. We hope this finds you all well and we thank you again for being part of our amazing community.

All best,
David, Sally, & Oscar

We feel so blessed by the incredible community we have here in Rochester, and our extended community that reaches out beyond city, state, and even national borders. Although we are both writers, it is incredibly difficult to find the words to match our gratitude. We feel buoyed by the love and support of all of you.

The goal of the fundraising part of this event was to gather funds toward a down payment on an accessible home for Oscar. That goal has certainly been met! And, as the universe would have it, we think we have found that home. We had been anticipating a move next spring, but just 5 days after the Oscar-Go benefit, we looked at a house in Brighton that is fully accessible, already. We will keep you updated!

We would like to be able to thank each one of you individually, and we hope, that over time we will be able to do so. The sheer number of thank yous, paired with the recent developments on the house front, may delay our ability to get to everyone. There are over 170 identified individual donors (not to mention countless anonymous donors). In addition there were over 50 businesses and individuals who donated items for the silent auction and raffle, over 20 volunteers helping with the event and there were over a dozen people/establishments who donated food and beverage for the night of the event.

We would like to extend a special thank you to the six individuals who became known as the Oscar Ensemble. They donated countless hours and valuable skills toward the planning, promotion, and execution of this event. They are: Donna Kowal, Tom Kowal, Joe Tunis, Alexa Scott-Flaherty, Jon Itkin, and Garrett Rubin.

Oscar really enjoyed his party! Although the crowd was overwhelming for him at times, he marveled at the “O” t-shirts that all the volunteers were wearing and he was thrilled to see so many of his favorite people all in one room. We have a very happy little boy and we thank all of you for being a part of his life, a part of our community and of our support network. Our gratitude is immense.

With big hearts,
David & Sally

To view more photos from the event, please see the Gallery page!