Wednesday

Dr. Appt.

Do you ever feel overwhelmed with information that you feel overstimulated? That is how I felt today after leaving C's nero appt. His nero retired so a new one took over his case he has been a nero for 25 years and he was very knowledgeable,kind and a lil geeky.

He came into the room and before I even sat down he told me I know what is going on..This Dr. then said with 100% that it is not CP/two other Dr. have said yes he does,but he does have dystonia and he believes its the L Dopa version, and then he said he has hyperexplexia. Hpx is a rare genetic disorder that both parents have to be a carrier of. It was another big word that scared me. "but to say it in a normal persons terms its not scary"..Its a mutation of 5 genes that doesn't get worse with time or change. The worst part from what I have read is SIDs is common but he is past that age.

The L Dopa I kinda already knew I don't like the idea of him having to take drugs for the rest of his life and he still might not have to, God has done amazing thing and will continue to amaze people by this lil guys life.

On my way home from the doc my husband was talking to me and telling me how this doesn't change our son. We know who he is and what he is capable of. But what it did do is tell us for sure we are done having kids if we are both carriers and it was only passed down to one of our three kids Praise God..

1 comment:

  1. I'm so happy to hear that you finally got some answers! I know how hard it is to hear those answers and how overwhelming it can feel, but atleast you can figure out how to move forward now! I'll keep you guys in my prayers :)

    ReplyDelete