Lyla was born at 31 weeks with Gastroschisis, her intestines outside of her body. She now suffering with short bowel syndrome, with only 20% bowel. She also has dysmotility, gastroparesis, anemia, liver disease & Anemia. Lylas had 18 blood transfusions, & under anesthesia a total of 13 times, 7 were intestinal surgeries. Lyla has multiple doctors, & is often in the hospital.
Tuesday, October 16, 2012
OCH feeding program
Lyla's been admitted for a Week now at Baylor's Our Children's House in Dallas, 4 more weeks to go in the intense feeding program. Lyla is doing pretty good, taking bites and drinks of nectar thick pedialyte. She gets mashed potatoes & avocado for lunch and dinner, gagging a lot while eating, but tonight she took 7g of avocado. So she's doing pretty good. She has 4 feeding sessions a day, along with OT & Speech sessions during the week. So far we've found out her tongue frenulum, cheeks, & lips are really tight. We've started doing face & mouth stretches/exercises to help. She had a swallow study yesterday, that showed she is at risk of aspirating, and will possibly need vital stim therapy (external electrical stimulation of her throat muscles), while she eats. We have a care conference tomorrow afternoon to talk about what will be best for her.
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