Home Sweet Home!

Hard to believe we have been home for two months already! Ava’s been so busy we haven’t had a chance to give a journal update. She is doing really well, going back to Children’s Specialized three times a week for Physical, Occupational and Speech therapy. She’s slowly improving as they see more strength in her muscles and quicker movements with arms and legs. Her biggest goals are to get more abdominal / trunk support to help her breath and hold her head up steadily on her own. She’s gotten some cool new equipment already including her GoBabyGo Car and a stander which helps her weight bear through her legs while being supported in an upright position. Children’s Specialized rehab technology is also working on an activity chair for her so she can sit up and play wherever she goes. She is not eating by mouth yet but we should be able to do another swallow study in the next few months and hope to see good results. Ava will receive her next dose of Spinraza on May 15.

Ava got to celebrate her first birthday with family and friends, and attend a few friends’ / cousins’ birthday parties too! We’re so happy  she is outside of the hospital and back with us (and Dempsey) in Hoboken.

Thank you for the support of Ava’s fight against SMA through the bracelet donation! We are so proud to see those purple bracelets as you help spread awareness!

We hope to see everyone soon now that this cold/flu season is behind us!!