Although we weren't able to attend the third annual trach conference there was a video put together. If you look really close you will find a picture of me right towards the end (8:10). I'm a star!
Today I met my feeding therapist, Karen for the first time. She took a medical history on me from my Mommy and then she wanted to see me eat some baby food. I don't know if we can really call it eating - since the surgery I don't really open my mouth anymore. My parents aren't sure if it is painful or if there is a problem with the joint. Despite not opening my mouth, it was clear to everyone that I wanted to eat because I kept reaching for the spoon and would smack my lips when I got some of the peaches. Karen says I am a complicated case due to my trach, cleft palate, recent jaw surgery and ankyolsis. She wants my parents to give me a little baby food each day now to encourage me to eat. She doesn't have much concern about aspiration pneumonia because I take such small quantities.
By chance, Mommy saw an email from another mommy who had a child with a trach and a g tube. They were 100% g tube fed and most feeding therapists had given up on the child ever eating orally. That mommy discovered an intensive six week outpatient feeding clinic in Richmond, Virginia and when the child left he was 100% orally fed. They have a lot of success with kids like me. Mommy knows it is a little too soon for such a program but it is nice to know there is an option available.
Tomorrow is my follow up appointment in Palo Alto. Since Daddy can't leave work it will be my Mommy and Lucille going. Mommy has always been in the back seat taking care of me, so she is a little nervous to drive all that way but Daddy says she will be just fine.
Mommy needs to call anesthesiology at Shriner's tomorrow. They want to see me next week and give me the green light before the surgeon will schedule my hand surgery. Welcome to mi vida loca - my crazy life!
Peyton Nicole Smith
You are a star, too bad there wasn't room for more pics of you sweet girl, the video would have been even better than it was!
ReplyDeleteGlad that your appointment yesterday went well, and can't wait to find out when your hand surgery will be so I know if your mommy is coming to visit me. I've really been missing her the past few weeks with the arrival of my little one. Crazy how much you can love someone so far away (that goes for you and your mommy - and your wonderful daddy too, of course!).
Hope that your appointment goes well today, half the hurdle will be mommy's long drive!
Love you!
Aunt Kristin