Less than 1 pecent is better than O

So the story goes like this...

Background info you should know is that Christian has been on the ketogenic diet (which somewhat controls his seizures) for 3 yrs, has kidney stones as a side effect, could develop kidney probs if on diet too long. ok so keep that info in the back of your mind as you read along. We tried to wean down off the diet and he started having more seizures so obviously it helps and we stopped weaning. Also in Christian's life he has tried 7 seizure meds none of which have ever helped.

6 month neurology check up is what we had today. Appointment goes like this...Basically give updates of number of seizures and types, anything new happening, making any progress in any areas..blah blah blah.
Me: So doctor what is the plan. How long can he stay on this diet? At what point will you say he has to come off of it?
Dr: Well sense he is not completely seizure free I would take him off of the diet if he has large kidney stones requiring surgical removal (ps readers he had this last july and after the procedure developed a high fever, had a one and half hour seizure which landed us in the e.r and hospital for 7 days) or we see any developing kidney damage.
Me: "thinking to myself" uhhh yeah don't need to add kidney damage to the list of diagnosis.
Me: ok and if he goes off the diet then what? Because isn't it likely that none will help due to his past history with meds.??

This is where it takes an awkward/tissue moment/turn for the worst! This is wear you don't want to be a fly on this wall:)

Dr: The likelihood of him responding to medicine for seizure's is less than 1 percent. (this does not shock me because I've always known this) However when said out loud from your doctor it results in this......

At this point the water starts pooling in my eyes..inner dialogue "don't cry, don't cry. this will get awkward then I won't be able to talk or stop crying.  repeat nice words in your head..jesus, rainbows, Bible, kitty cats:))). hmmm not working . ...oh yup here it comes.. the blink..then the water spills over. There's no going back. the doctor obviously knows i'm crying. When the water sat at the brim of my eyeballs as I stared at him while he spewed statistics I figured he didn't know I was about to cry on him. :).  At this point he awkwardly says sorry and hands me a tissue box and I say "it's ok". who's kidding who..it's not ok. Oh but wait there's good news (said sarcastically)...

Dr: But it's not like he has a 0 percent chance of meds helping. Kinda like winning the lottery. It's not a zero percent chance but slim.

WOW. It may have been the stream of momma tears that led him to find something positive to say. And that's ok with me. Bless him...he was trying. My doctor is super kind and one of those great neurologist that listens and shoots ya straight.

The bit of crying stopped as quickly as it started and I suppressed it for the rest of the visit. However the fun didn't end there. It is typical that he checks Christian's reflexes during the visit. I've never really asked what he's looking for so this time I did...in a somewhat joking manner I say "what does it mean if there foot doesn't move"? (he runs the metal thing up the bottom of his foot and Christian's foot moves). He says it's more on what their toes do.
Me: oh  so when there toes move up?(because that's what Christian's did and I thought that was a good thing).
Dr: actually they should curl down..
Insert couple seconds of silence
Inner dialogue: really why did I even ask.
Me: hmm well guess that's not a good thing then..probably shouldn't have bothered asking..
He chuckled and said well it's typical of kids with CP.

O boy. This post is not meant to make anyone feel sorry for us. It's one of those moments I thought I'd share and if nothing else maybe you will find a little humor in it and keep it in your back pocket for you next doctors cry session.