Negative

Saturday, September 28, 2008
So we got some good news this week. On Tuesday, Brian and I received a visit from one of the Neurologists at Loma Linda. He told us that Kennedy's Team wanted to re-order the Luekodystrophy tests, however, he said that Kennedy did not have Luekodystrophy and there was no reason for the test to be re-ordered!!!! He said that he and couple colleagues reviewed her MRI and noted that the myelin (the white matter in the brain) was normal. However, he and the geneticist wanted to order a couple more tests because they thought that Kennedy might have a Congenital Disorder of Glycosylation Type 1A (CDG-1A). I do not know to much about this disease, because i don't want to look to much into it until it is confirmed via blood test. The most I know is that this disease affects most body systems especially the nervous system and liver function. I don't think it is terminal like Luekodystrophy, however, I don't think that this is a really good disease to possibly have either. According to the Neurologist if this test comes back negative he said that Kennedy most likely does not have a gentic disorder. The only thing wrong with her would be her underdevloped cerebullum. So we will keep on praying and hope that is all that is wrong with Kennedy.

Kennedy had her hearing test on Monday and she had to be referred because she failed her first test. So the very next day she had a more advanced hearing test which had a wider tone range. The tech told our nurse that she could hear, however, she does show signs of having hearing problems. She also had a vision test. The tech said she could see, however, she did not have great vision either. Kennedy's liver has also become enlarged. We were told that her liver could be blocked and that could be the reason for the bilirubin not being able to escape her body and for her continued yellow coloring. She had an ultrasound on Tuesday, I should get the results today.

On the positive side, Kennedy is doing great on her nippling. She is up to 56 cc's per feeding (which is 4 cc's from 2 ounces). Last night she nippled 47 cc's at her 8:00 pm feeding (the most she has ever taken from the bottle). When I spoke with her nurse this morning she told me that she nippled an entire feeding last night!!! This is such a good sign because this is one of the last big hurdles Kennedy needs to overcome in order to go home. Kennedy also got a big girl crib. This means she is able to regulate her own body temperature and no longer needs the beds with heat lamps. Things are going good. I am just so happy that she is making improvements and she is becoming stronger and stronger everyday. Brian and I were very patient and are so excited to be able to hold our baby whenever we want and for as long as we want. It is such a great reward.

(Above: Kennedy loves keeping her hands up by her face)

(Above: Peanut asleep with her Daddy)

(Above: Kennedy was not to thrilled about this family picture. She was mad that Daddy had to wake her up)

(Above: Daddy feeding Kennedy - she is such a good eater.)

(Above: "Get this tube out of my nose" Kennedy loves to grab and pull on her feeding tube)

(Above: She is so beautiful - she loves pink, can you tell?)

(Above: Kennedy's first bath in her bathtub. She didn't like it at first but then she really seemed to enjoy it once she was in the water for a few)

(Above: Grandpa and Kennedy)

(Above: Kennedy in her big girl crib with her new mobile)