Swallow Study

This week we experienced a minor setback in Ava’s progress. She had a swallow study to confirm whether or not she was aspirating while eating - getting food or drink into the lungs / respiratory tract when swallowing. Ava ate and drank foods of different consistencies under X-ray so the doctors could see exactly where the food went when swallowed. Unfortunately it was determined that part of most things swallowed was going into her lungs as her swallow muscles are not yet strong enough to control where food / milk is going.
Speech therapy will continue to work on strengthening these muscles but for now she will not eat by mouth unless under their supervision. All feeds will go through the nasal feeding tube instead. Hopefully with the Spinraza, these muscles will get stronger and she can go back to enjoying all of her favorites over time.

Ava has still been doing fantastic with her physical and occupational therapies and the progress she’s making there shouldn’t be overshadowed by the feeding news. We are so excited about the increased movement and the joy she’s getting out of these new sensations and experiences. She plays peek a boo like a pro and is working on waving / blowing kisses. She’s also mastering her GoBabyGo car! And if you come for a visit you’ll be sure to hear her loud vocal range as she sings, chats...or whines from her room 😊

♥️Laura and Danny