Share. Connect. Love.

Ava Jean Finelli - Journal

Read Entries & Updates

 

Posted 2018-05-21T13:13:37Z

Speed Bump

Ava was scheduled to get her Spinraza injection on Tuesday May 15 but, unfortunately we had a small setback and she did not get her fifth dose yet. Ava woke up a bit congested that morning and as we were waiting for her turn to see the doctor the congestion got much worse and she spiked a 104 degree fever. We were already at Morristown Medical Center so went right down the hall to the ER. Ava tested positive for rhino enterovirus, another respiratory infection that presents as a common cold for adults, but can be seriously compromising for an SMA patient. An x-ray also revealed pneumonia in her right lung. She was admitted to the Pediatric Intensive Care Unit again and is under the care of the same doctors as in the fall / winter. Over the last few days she has made tremendous improvement and has been fever free since Thursday. Her spirits are back up and she is playful and chatty again. She is not 100% better yet but she should be back to normal soon, much quicker than last time. The recovery speeds is indicative of how strong she’s getting! Once she’s well she will be able to get Spinraza and get back to her therapies.[...]

Posted 2018-05-08T12:39:00Z

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.[...]