Thursday, October 16, 2008
Wednesday, October 15th, 2008
Another day another therapy appointment. Today it was feeding therapy with Karen (yes, another Karen). She hasn't seen me since before my jaw distraction removal so she was very surprised to hear that I don't have a cleft palate. Mommy is waiting for UC Davis to call with an appointment for my modified swallow study. Karen provided her with a list of things to bring as well as a list of questions to have answered from the results of the test. I ate a little bit of flavored apple sauce and was very interested in feeding myself rather then having Mommy feed me. It was fun but got to be a little messy and I got bored pretty quickly. Karen is hopeful that I will be able to get enough good swallows in to get some results back so we have a better idea of how to move forwarding with the feeding therapy.
Daddy got a call from Stanford Genetics today letting him know that the chromosone breakage test that was done was negative for any chromosomal issues. My parents and the geneticists weren't expecting to find anything so it wasn't a surprise to them. At this point, the genticists will send a final summary based on their exam and the two tests that were performed.
After the advice of other mommies - Mommy ran out and got the Butt Paste diaper rash ointment tonight and instructed Marianne to start using it right away. Here's hoping the diaper rash gets better! Mommy let me take a rest yesterday from using my speaking valve and the bleeding stopped. So from now on my parents will watch it closely and start giving me some rest times during the day from the valve and adding some saline to my trach if I sound dry. Other trach mommies said this has happened to their kids as well and not to be alarmed.
Peyton Nicole Smith