"Lyla take your bite"

Lyla is doing great in the feeding program. 4 weeks in & She now eats (all blended) potatoes, carrots, avocado, green bean, ravioli, chicken & dumplings, chicken & rice, chicken & noodle, turkey, beef, beef stew, oatmeal, pancakes & she drinks Elecare vanilla formula. Butter is added to everything for extra calories. She is taking in over 200 calories by mouth a day. We have been able to decrease her tube feeds to 17 hours, she gets 1 hour & 45 mins off her feeds for each meal, so she has more room in her stomach for her meals. And we were able to cut her tpn back down to 10 hours. 

I started out just observing from a one way mirror, watching and learning the protocol. "Lyla take your bite, and you can play the toy" Lyla takes her bite, then the toy is given to her for reinforcement, then after a few seconds of playing, the toy is taken away and Lyla is asked to take her bite. Its all about the cues, voice tone, praise, patience, consistence, ignoring behaviors, & time. Each feeding session is 20 minutes long & no matter how well Lyla does through  out her meal, if she is asked to take her bite or drink, refuses then the timer goes off, shes told for example "Lyla your meal is over, you did not take your bite, you may not play, you can try again next time"  If she had just took a bite, then the timer goes off, shes told for example " Lyla, Your meal is over, Good eating and drinking, you may play while I clean up".

On Oct 24th I was re-introduced into the room, while the tech fed Lyla. I had to ignore her refusals and praise her eating & drinking. Then after just 2 days of watching from inside the room, I started feeding Lyla while a tech sat in the room.  Lyla does great and understands if she takes her bite she can play with the toy. There has been meals of refusals, our longest stand off was 18 minutes, but I was patient & consistent,  she broke and took her drink just before the timer went off. I continue to feed her all 4 meals everyday, and its going great. Today I sat in with Miss Kayla during speech therapy, and learned to introduce a new food. During speech, she gets facial stretches, nuk brushes on her cheeks and tongue, and is introduced new foods, everything is introduced in speech, before added to her menu. If she doesn't do well with it in speech, then they wont add it to a menu.

She also gets to play with Miss Aubrie, her OT, almost every day. Lyla loves Aubrie, she says it herself, and Aubrie just loves Lyla. They start out in the gym, working Lyla's core, its really fun for her. Then she sits the the high chair for facial stretches, food play, and chewing practice. Miss Aubrie makes it all fun. And Lyla is learning so much new stuff. and with all the facial stretches, I do them with Lyla too, she is getting more loose, especially her upper lip and left cheek.

Playing in the gym with Miss Aubrie

Lyla and I have made so many friends, its sad when someone goes home, but we are happy for them. Out of the feeding kids, Lyla has been here the longest, we have even seen so come and go. Since Lyla is so medically dependent she is staying longer than the normal 30 day feeding kid.  So far in our 4 weeks we have had a lot of fun.


Child Life has daily crafts and all the kids play together in the play room or out in the court yard. They have therapy dogs come visit. One night hey had a Halloween party in the therapy gym , then Halloween morning all the kids at Our Children's House walked over to big Baylor for trick or treating.  Jacie came into town from Georgia and stayed with us for a few days. & we used Lyla's 6 hour therapeutic day pass to leave on Halloween. We went to Paige's and hung out, played with mister Lyrik.  Amber came over and we took Tutu Turtle (Lyla), Yoda (Titan), Darth (Marley), & Mario (Ben) trick or treating. Then out for some dinner at Chilis before we had to be back at OCH. 

I customized her Halloween costume...It was a butterfly, I cut off the wings and antennas, added a bow and a shell...inside the shell is her feeding pump ;)

 free from her back pack for a while

Everyone here loves Lyla and cant believe she can say big words like Gastroschisis :)  She is getting so big, so fast. She is a little copy cat and repeats everything. She says sentences, sings song...she is so smart, I will hum just the first few words of a song, just a hum, and she starts singing it. she knows sooo much.