January 7-Sprints!

Thank you all for the follows and kind words! We are lucky to have such an encouraging group of friends and family following Ava’s journey.
Ava had a great few days and yesterday worked on sprinting (breathing without her ventilator support) for 30 minute increments. She was able to maintain good oxygen levels during the sprints so over the next few days the doctors will combine sprinting with weaning the support settings on the machine. Ideally Ava will get back to not needing any breathing support at home or just needing it at night for the time being.
Dan and I were able to take a tour of Children’s Specialized Rehab facility in New Brunswick yesterday. Potentially we can discharge from the PICU directly there where Ava can receive physical, occupational and respiratory therapies daily. We are optimistic that between the Spinraza dose and daily therapies Ava will get strong enough to fight through respiratory season and move more and more.
More positive updates to come 😀