When Baileyanne was three, we were in the process of trying to get a diagnosis. The doctors kept telling us that she was a late bloomer and that she would catch up. Well, in the process of diagnosing her, we were determined to try anything and everything to help us figure out what was "wrong" with our little girl. They thought that she might have fragile X syndrome which is an abnormality on her X chromosome. The doctors gave us the option of having numerous tests done to help determine if this is what she had. Our main option was the MRI... this would tell us if she indeed did have Fragile X.
We showed up at the hospital bright and early and they gave Bailey some orange liquid which would make her woozy and eventually fall asleep. Dan took the morning off of work and my mother in law also was there to help out. Noah was at home with a friend. He was about 3 months old if I remember correctly. The first attempt in getting her to take the medicine was a nightmare. She fought us tooth and nail and got so upset and threw up the medicine all over my poor mother in law. To this day, she will not let me forget about that detail of the morning. She calmed down and we then were able to get her to take the second dose. They then put us in a hospital room and told us to watch her while she would become sleepy and eventually fall asleep... that never happened. We were instructed the night before that she could have NOTHING to eat or drink the day of the scan. Well, while waiting in the room for the medicine to kick in, Baileyanne found a TINY piece of graham cracker on the floor and of course... it went in her mouth! She was three, didn't know better and was hungry, that poor kid. I was SO upset! There was NO way they could do the scan because if she were to choke, she could aspirate the cracker and become very sick. In tears (well, maybe more than that), I went out to the nurses station and started becoming very loud, asking for the manager of that floor and wondered who was in charge of maintenance and why the room was not clean and why was there food on the floor in a hospital room?!? I WAS MAD! Needless to say, we went home and rescheduled the MRI for another day. This was only the beginning...
2 comments:
I'm disappointed that you felt that you had to have numerous tests to get a fragile x diagnosis. Fragile x can be detected by a very simple DNA test. Just a cheek swab. An MRI doesn't tell anything. I'm so sorry and I haven't even heard the rest of your story. :(
I just got your comment on my blog :). Thanks for visiting.
I hope you don't feel in any way that I blamed you. I was disappointed in your docs at that time... and a lot of time they just don't know either.
We had an MRI done on Matty too. We found a little bit of fluid on his brain but not enough to cause the problems that he was having. And his doc initially did the wrong test for the fragile x too. Matt was his learning kid.
I'm glad that you did find answers irregardless of how you got there :).
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