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Ava Jean Finelli - Journal

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Posted 2018-01-07T18:39:02Z

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 😀[...]

Posted 2018-01-03T20:57:02Z

Background

Hi everyone,

Dan and I wanted to create a space where we could provide regular updates to friends and family who want to check in and find out about Ava's progress. It is difficult for us to remember to share (and repeat) Ava's struggles and care with everyone, and even to remember what details we've shared last so we know where to continue. We appreciate everyone's concern, and want to make sure everyone has a chance to hear what is happening with Ava. To bring everyone up to speed, I'll start at the beginning.[...]