nvts Travis has had facial droop since his last stroke at 18 which had us determined to find out the "why" of it that led to discovering the polycythemia. Neuro was certain it was stroke related. No MRI can really confirm it due to the stroke and brain damage he suffered at birth. This droop is now more profound, and easy child has noticed him dragging his left leg a bit which is new, plus we're seeing it in his motor skills. Neuro's theory for a lifetime of neuro regression after long periods of progression or "normalcy" was that unknown to us Travis has had a series of strokes throughout his childhood. The brain damage already present made it hard to spot.
Marcie I've been putting off getting him on disability due to Travis' pride. I raised the boy to be proud, regardless of his dxes and disabilities. I think I did too well a job. But in the past couple of weeks he's been asking about it. So I think he's having such a hard time right now he is open to the idea. This also tells me something of his condition.
The guilt is getting to me this morning. I know I can't change the past. Maybe it's that I'm going to have to explain to the oncologist why Travis hasn't been in treatment for the past 3 yrs. Not that I didn't try, but now I don't feel like I pushed him hard enough, or made it clear enough as to the seriousness of the polycythemia. But then I did the same with the neuro he also hasn't seen in 3 yrs, and couldn't get him to go even though he's has alot of trouble with the seizures. I think Travis had reached the point that he was sick of docs, sick of testing, sick of treatment. And when he decides to be stubborn it's impossible to get him to budge.
But I'm the one who is always "on top of things" with Travis because there has never been a period in his life where it wasn't necessary. I dropped that ball. I'm trained as an LPN. It's not like I don't know what to look for. I know this child better than anyone. I always pick up on even the littlest changes even when others don't. And yet since last winter I didn't see what was going on right in front of me. The long severe illnesses with a boy who doesn't get sick, the utter exhaustion with a boy who has always had too much energy and trouble sleeping, the severe headaches, the weight loss...... I could go on. And while I noticed it, it didn't seem to register. Only when I saw the blood pooling in his hands and feet did the red flags go up and all the symptoms started screaming at me.
I know I'm also dealing with school and Nichole and mother in law. I know easy child a trained RN also missed it. I know that in my head. I do, really. But in my heart I dropped the ball in the worst way. I know with the nature of this disease, and with Travis' symptoms that it is very possible it has progressed into leukemia. I feel like I let him down when he needed me most to be paying attention.
And for me, that is unforgivable.
Thank you for the good thoughts, prayers, and support. We so need it. I'll post as soon as we get back from the doctor. I know blood tests will be done, but I don't know how long we'll have to wait for the results. If she stats the order we could know right away. I hope she stats it. If I have to wait, it's going to eat at me until they're in.
(((hugs)))