well seen the neuro dr. yesterday. The first thing out of his mouth is your son is a mystery child and me and the genetics dr. are just stumped on what to do next, we have done soo much w/ no answers. when the truth not a whole lot at least from neuro part has been done. Come to find out, which we kind of new, he thinks the same way our old GI dr. thinks, whats the reason to find out whats going on b/c a high chance he has something that he will have to live w/ as long as he lives. Again we had to explain we know we may never find out whats wrong, or we may find out and it will have no cure or medicine, but for our son's sake we need to try our best to find out b/c if we don't try and it ends up being something that can take medicine to help him either get better or more comfortable then we want to know that so we can help him, if it ends up being something for life than we will face that road when we know for sure.
The neuro dr. is going to have the surgeon take a muscle biobsy to see if he has mito or not. and then the neuro dr. himself is going to slip in while he is in surgery to try and get some spinal fluid to test. So, maybe we will get some answers, maybe it will say no he don't have something which will be great or maybe it will say something else. Just trying to do the best we can for our son, hard to know exactly what to do everytime, thats why on some desicions we have actually waited awhile on, did research to find out what the best option is for our little man.
No comments:
Post a Comment