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April 13th, 2009, 05:48 AM
Join Date: Sep 2007
She has Cerebral Palsy, seizures, and defects that effect her larynx, trachea, epiglottis, palate, tongue, and skeletal system. Some of these defects obstruct her airway (severe Laryngomalacia and tracheomalacia). She will eventually need airway reconstruction. She has some GI issues that include reflux and bleeding. She has feeding concerns as well. It seems every time she sees a Dr, we find more wrong. Medically fragile, turns blue, passes out, etc.. She is a sweetheart with a cute personality. I love her so much.
(update 1/10) Ava was diagnosed with a metabolic disorder and has had her first airway surgery.
UPDATE 2/11 --- Ava's muscle biopsy came back positive for Mitochondrial disease (ETC1). She also has Eosinophilic Esophagitis, dumping syndrome and severe hypoglycemia. She is on continuous GJ feeds for her unstable glucose and feeding intolorance. She remains on oxygen for OSA and central apnea, when needed.
Thank you, tasha_mae, for my siggy!
Last edited by Ditzzy; February 20th, 2011 at
. Reason: Edited to update
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