Going For Gold

In the spirit of competition, Cole has decided that he wants to be the first in line and the best at everything. Even if that includes things like requiring his mother to call 911 and not get any more than 5 hours of sleep per night.

He is a champion, a warrior, much like the athletes in the Olympics. His story is more like those that qualify and are just happy to have the chance to be there. Not expecting to make the podium, but reveling in the experience.

We have kind of been like the gymnast that falls on their behind. Get up, wave and smile...and do it again.

This year has been wild, but the summer has just taken it to a whole new level. This child has needed rescue meds, every day. Even if I try to hold off and let the myoclonics just work themselves out, there is a tonic-clonic, or a complex-partial. Even though some of these facial complex-partials are resolving before I can get there with the meds, the "aftershocks" last for hours. Cole is always trying to be different. His brain is always trying to be the star. Seizures will leave you more exhausted than any workout.

Last week, I called 911 twice in 3 days. That has not happened in I don't know how long.For the sake of record keeping, which has totally fallen by the wayside: Cole went to the ER, after a 30 minute non-convulsive status seizure, with a 103.5 temp, even on Tylenol. He had been having fevers for a couple of days, but for him...that's normal! There were no other signs of illness. It is so hard to tell if Cole is sick, because he does not feel pain the way we do and he never complains. I have no idea if he is hurt, I just have to guess. The doctor said he MIGHT have an ear infection, but with a temp that high, ears just naturally turn red. They put him on amoxicillin, which he has had before and sent us home after his fever went down. That was technically Sunday morning.Warning:don't become friends with us unless you can handle an emergency phone call at 2:00 in the morning :) Thanks, S!

Monday, he broke out in a rash and it spread head to toe. It was not an allergic reaction, but a summer stomach virus. Had nothing to do with the anti-biotic. His ears are fine. Fun! Now the virus has taken up residence in his g-tube site and is causing all sorts of drama.

I have not been keeping score because honestly I would just be sitting with a notebook all day making tally marks. Statistics are dismal right now. SO-record keeping over.

There are times when I think that Cole is trying to make seizing an Olympic sport and he wants to stand on the top of the podium, proving he is the best at it. So many types! So many lengths! Different times, world records! He is a star :) I would hold him up there, but honestly this is not an event anyone should have to medal in.

However, we still have our champion of our hearts and his winning smile.and that is better than any gold medal.