Leaps and Bounds

Sunday, September 21, 2008

Today Kennedy had tons of visitors; Nana, Mimi, Grandma, Jen, Auntie Ashley, & David. She is a busy little girl. We finally got our very first "5 Generation" picture. Plus, Auntie got to hold her Kennedy for the first time - she claims that Kennedy likes to be held by her better then me, but I am not so sure about that!!!

(Above: Nana, Mimi, Grandma, Mommy, and Kennedy - 5 generations)

(Above: Auntie and Kennedy - together at last)

Kennedy is improving daily. She is now on nasal CPAP and all her sats are excellent. From what we are hearing from the nurses and doctors, they will be switching her over to nasal cannula tonight or tomorrow morning. If this is the case, she will be on the lowest level of oxygen support she could be on. Kennedy also got out one of her PICC lines and her arterial line in her foot. I am thinking they will be taking out the other PICC line soon since she is no longer on any intravenous medication. Her blood pressure medicine and anti-seizure medication are all being administered orally. She is also off all her TPN and Lipids. With all these lines gone I am finally able to dress her!!!! She can wear anything as long as it does not go over her head.

Kennedy is now on full feeds. She is currently up to 40 cc's every 3 hours. We are nippling her 15 cc's once a shift. According to the doctor we spoke to tonight, they might increase the amount she is nippling to every feeding. She has really mastered the sucking, breathing, and swallowing. She does not have any d-sats during nippling, which is such a positive sign that she will soon be able to nipple ALL her feedings.

I am so amazed by all her progress. We are still waiting for the tests regarding the Luekodystrophy. I am praying that these tests come back negative. It is so hard to stay level headed about everything. She is doing so well and excelling by leaps and bounds that I don't want to get over excited. I mean she still has a long road ahead of her, but it appears that she is letting nothing get in her way.

(Above: Kennedy and Grandma's first picture together)

(Above: Daddy and his little peanut)

(Above: Kennedy wants these tubes out - here she is trying to pull out her breathing and feeding tubes)

(Above: Taking time to stretch out)

(Above: I don't know what it is about this picture, but I love it!!)