From Bad to Worse

Friday, September 5, 2008
Just when I thought things couldn't get any worse. Brian and I were patiently waiting the results from Kennedy's MRI/MRS. We were waiting by Kennedy's bed all morning for the doctors to make their rounds. I couldn't wait anymore because I had to go pump. I went out and got my mom to set in just in case the doctors came through as I was gone.

Go figure, I was gone for fifteen minutes and the doctors came by. Dr. Abriham (the fellow) came by with a team of other doctors. They informed Brian that the MRI/MRS didn't look so good. Kennedy had a small/underdeveloped Cerebellum. She gave Brian a printout of a neurological condition called Cerebellar Hypoplasia. However, this was just the condition she had, they still had no idea of what the underlying disorder she had that caused this condition. In an infant or young child, symptoms of a disorder that features cerebellar hypoplasia might include floppy muscle tone, developmental or speech delay, problems with walking and balance, seizures, mental retardation, and involuntary side to side movements of the eyes. In an older child, symptoms might include headache, dizzy spells, clumsiness, and hearing impairment.

When I came back into the room Brian told me the bad news. However, he had no further answers to any of my questions. I think both Brian and my Mom were in such shock that they did not ask the doctor anything. I wanted to know what this meant for Kennedy.....what she going to be able to walk, how severe was this, was she going to pull through this????

I had the nurse page the fellow because I had to talk to her myself. I apologized to her for making her come back, however, I had to have my questions answered. She told Brian and I that it didn't look good. I know she gave us the worst case scenarios, but she told us that they didn't know if Kennedy would ever be able to breath on her own. As she was talking I held back every tear. I made a rule from day one - there is no crying as Kennedy's bed. She does not need to hear or feel any of that. she is going through enough and what she needs from everyone is positivity. Babies can sense these things and I didn't want to stress her out any more then she already was.

After Dr. Abriham left Brian and I just stared at our little peanut. How could anything be wrong with her. She looked so perfect - I mean she did not look like a baby with neurological problems. I know it is not my fault but I can't help but think what could I have done to prevent this. The Neurologist came in about ten minutes later to talk with us. He said that his team was looking at a specific syndorme/disorder, however, he had to go home and do some research on it because there are only four documented cases in the whole world. WHAT - now she possibly has a problem that only four people in the world have. That does not sound too positive.

How could things get soooo bad. About a week ago Brian and I thought we were going to be taking Kennedy home in a couple of weeks and now we are being told that she might not even pull through!!! I had had enough. Brian and I walked out of Kennedy's room broken hearted. Enough was enough. Right when I got into the hallway I broke down. All I kept thinking was all the things I was going to miss out on. I would never be able to take Kennedy on vacation, I would never get to take her to softball practice, I might not even be able to take her home to see her custom room that her family spent so much time on etc....

We broke the news to my parents and all just sat in disbelief. My parents left right after and Brian and I had to get out of the hospital. We went down the street to get a bite to eat. We were gone for 45 minutes before we both wanted to get back and see peanut. We were able to sit and talk to her for about an hour before shift change (6:30 8:00). So we went down to the car to wait for 8:00. As we walked into the parking lot we saw a car with a bumper that was hanging off. Brian and I both looked at each other and said "NO" that couldn't be our car. Yep, it was!!!! Some inconsiderate A**HOLE hit my car and didn't even leave his/her name or number. I looked at Brian and told him that I was just about at my breaking point and I couldn't handle anymore. What was someone doing to me - I mean I can handle a lot but enough is enough.