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Ava Jean Finelli - Journal

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Posted 2018-02-23T02:27:13Z

“Only the strongest little girls get surgery on their birthdays”

Ava had surgery this morning to have a gastrostomy tube placed in her belly. This gtube replaces her nasal feeding tube and is how she will receive feeds from now on. She handled surgery, intubation and recovery like a champ. She is staying overnight in the PICU for observation but should return to Children’s Specialized tomorrow. We are hoping that with the nasal tube gone she will be more comfortable swallowing and her speech therapists can eventually get her back to eating by mouth. It should also have a positive impact on her respiratory-wise; without the tube there’s less airway restriction.[...]

Posted 2018-02-16T21:34:00Z

Just Fun

No medical news in this post just a few photos! Ava’s still going strong and had a fun week! She celebrated her first Valentine’s Day with crafts and balloons with her new friend Gigi and even had a surprise visit from Dad! She got all dressed up to meet Miss America and was featured in an article about the visit. She got to go outside on the swing and continued pool and car time. [...]

Posted 2018-02-09T02:35:04Z

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.[...]

Posted 2018-02-03T15:26:00Z

“Therapy Dream”


Ava’s continuing to make great progress at Children’s. This week an occupational therapist working with her in the pool commented that she’s a “therapy dream” because she is so motivated to learn and tolerant of trying new moves and positions to make her stronger.[...]