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.

A lot has happened!

Ok so it's been a really really long time since I blogged. A lot had happened in these past 7 1/2 months.  Quick summery of the past months, the whole eating by month thing didn't go well at all, had another central line infection begining of March, Then vacation to California, then admitted the day of her birthday party for RSV, Started to refuse bottles, learned to crawl, walk, talk... All that good stuff. had a endoscopy & colonoscopy for blood in stool, turned out to be just stomach irritation. She has turned into quite the little model & Stayed out of the hospital for 4 whole months, minus the million of ER visits.  Now that I fast forwarded to the present here is our resent update :)

Lyla is doing good. 18 months old now, but advanced for her age. She had her OT re-eval and she scored higher than her age in every category, highest score being 34 months in grasping. She is running, talking like crazy, her vocab is over 50 word, including Gastroschisis, 3 word sentences, 6 hand signs, and she will attempt to repeat anything you say. She is potty trained, well there wasn't any training involved, she just knew what to do, she went 8 times the first day she sat on her potty, and hasn't stopped since. She is doing awesome physical and mental wise. Health wise is ok, spent all of August and the first half of Sept in the hospital for dehydration, vomiting,  central line infection and new line surgery. She was only a week away from getting off tpn, but had a huge set back in her tube feeds and tpn during her admissions. She has done well with drinking from her cup, but still having problems eating by mouth, so on Monday she will be admitted into Our Children's House at Baylor, Dallas for a 5 week intense inpatient feeding program. Hopefully this will help use get closer to weaning TPN. Then the plan is reverse her ileostomy within the next couple of months. It's been a busy past 2 months and will be busy the next couple of months as well, but we will get through it, just as we always do.

We hope you all are doing well

<3 Courtney & Lyla