I've been so busy lately wearing so many "hats" that I feel I don't get the time to reflect on everything going on with Jayen. Like the rest of our life right now I have no idea which way is up anymore. Jayen was supposed to be presented at surgical conference for a couple weeks now, but every time I call he either wasn't presented or they are still discussing him. We are still having seizures every three to five days. (And yes I say we because these things affect all of us) Our last conversation with the nurse we were told Dr. Dunn and Dr. Frost are comparing notes. She kept sharing that she feels that is even better than surgical conference but she can't tell me if they are done comparing, if they have figured anything out, or when I will know more. There isn't an end date in sight! Life is in such limbo right now. How are we going to make my baby better?
Last night I learned that Matt's first cousin died. He had a few medical issues but seizures was one of them. When I was talking to Matt the thought crossed my mind but came out of Matt's mouth first; could this be Jayen's fate. Could seizures cause the death of my baby? We need to get things figure out with him. We need to be on a better path. We need to help him!
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