UPDATED: June 09
Ava's main diagnosises/problems are Cerebral Palsy, Laryngomalacia, Tracheomalacia, Petit Mal seizures, Macrocephaly, Hypotonia, repeated Cyanosis, Syndactyly, Ataxia, Reflux, breath holding spells and some other anatomical airway defects. It seems like we're finding more things wrong with her at each appt.
We recently switched medical teams so that she could be treated by the Aerodigestive Team in Cincinnati. Ava will have airway reconstruction later this Summer. She'll see the Feeding team, as she still cannot eat most purees or solids and she hasn't gained weight in over 3 months. Genetic testing will be done also since it is believed she has a syndrome.
Ava has PT, OT, and will have ST for feeding. She cannot support weight on her arms or legs. We're working hard on learning to crawl. She was casted for her DAFOs and will get knee extensions for them too.
1. Airway reconstruction goes well and is a success
2. That she quits turning blue and passing out
3. No more seizures
4. Her muscles get stronger
5. We can get her off steroids
1. Her Tracheomalacia is looking better as of her last bronchoscopy
2. She has no intellectual delays
3. She's a very happy baby
4. As of now, she does not need a Nissen