Is it to much to ask for answers???

Friday, November 7, 2008
Why does it seem that all of Kennedy's doctors are completely retarded? I am so sick and tired of not knowing what is wrong with my baby. Come on already.....Kennedy is over 12 weeks old and we are still no closer to a diagnosis then we were the day she was born. Every day that passes shows me more and more that there is something wrong with Kennedy - but what??

This week we had our appointment for our swallowing study, however, it was nothing like we thought it would be. We thought we were taking Kennedy in for a barium study, however, we just had a speech pathologist listen to her throat and chest with the stethoscope while I gave Kennedy her bottle. She said that it did not sound like Kennedy was aspirating, however, wanted us to get a barium study. She is not sure what is going on - what a surprise!!

Next week we have an appointment with Nephrology and Kennedy gets her second RSV shot. I also am going to take her back into her pediatrician because she keeps throwing up after her 8:00 am and 8:00 pm feeding. I think that one of her mediccations is messing with her stomach, but I am not sure which one. It could be either her multivitamin, iron, or phenobarbital - who knows.

Also, the genetic doctor at Loma Linda is driving me cuckoo!! I have called 5 times and left three messages to see what the results of Kennedy's Mitochondrial tests were. Do you think I have heard back from them - nope!! I was told that the test results would take two to three weeks. It has been over four weeks now and we have still heard nothing. I just want to know if it was positive or negative. If it is positive I want to try to get Kennedy some sort of treatment ASAP to prevent the disease from progressing and if it is negative I want to keep searching for answers.

Anyways, enough with my complaining!!! I am just frustrated that is seems like nothing is being done for Kennedy. It seems like all these other people have answers and are able to work towards improvement for their babies and we are just stuck - why????