Jailynn is really taking off. Each day she becomes more and more the Jailynn we know and love. Today I was so happy to come to Kennedy Kreiger after my math class and see her progress. I was so excited when I laid her in her crib and she layed down and turned and went to sleep the same way she did at home pre-surgery. So strange to some but so special to me as her mom. Her little personality and mannerisms are all coming back. She did awesome handling all her therapies today for the first time. She had the rest of her staples removed today and all sutures except 1. when her grandma came to pick her daddy up Jailynn lit up. She srtaring laughing, clapping, smiling and her smile changed to a full smile insteada lopsided half smile. She said nani daddy and yay! I am so pleased with how far she is coming all on her own even.
jason and me kinda had it out with a nutritionist, she wouldnt listen to jason at all and for my husband to speak up it must be something important on his mind. she totally blew off what he was saying like she didnt believe him. She doesnt want to reduce jailynns tube feeds, which are 22 hours a day until jailynn eats more by mouth but they are pumping her so full she doesnt build too much of an appetite. we wanted to change the feeds to be after meal times to supplement. tomorrow things should change though. I talked to the pediatrician and we worked it out.
i also figured out why jailynn has been throwing up, hopkins had her on too high of a dose of depakote/ valporic acid. Her dose was raised in november and then lowered because her stomach could not handle the higher dose. her neuro had never changed the dose back down in her medical record, but now it is straightened out.