The Meds Begin

For months and months, as we visit each of a million new doctors, we have been asked, "What meds does Connor take for SMA?" My answer was always, "Nothing." We've never been given anything and we've never been told to take anything. But each time I was asked that, something (very paranoid) inside me was yelling, "SHOULD I BE?? WHAT DO YOU KNOW THAT I DON'T? ARE OTHER SMA KIDS TAKING SOMETHING? IS THERE SOMETHING OUT THERE THAT CAN HELP HIM THAT HE'S NOT TAKING??"

And the truth is, there is nothing. Nothing that cures this or can take it away from us. Nothing to make the progression stop. Yes, there are some things that some families feel makes it slow down in their kids, but most have yucky side effects that could make some kids worse. That just seems so backwards to the way things should be. There is always something you can do...if you get an infection, you take an antibiotic...if you have a sore throat, you can use that yucky spray...if you get really sick, you go into the hospital and get some major drugs, are maybe hooked up to a machine or two for a few days, and then you start to get better. But my child has this horrible illness that took away his walking and makes him fall all the time with the simplest tasks, and makes me scared to death of the common cold, and will only get worse...and yup, we're taking nothing.

But today, we have something! This morning Connor took his first dose of Carnitor. It is supposed to help him use energy more efficiently. (And judging by the look on his face that is some pretty nasty stuff. I think we'll hide it in some juice tonight.) In four weeks we start the Co Q-10, an over-the-counter supplement that helps the mitochondria in his cells with protein coding blah blah blah biology I don't remember from college.

So, since our life has now become backward, I guess I get a free pass...a free pass to be excited about taking some meds that in the back of my mind I know really aren't doing much...but hooray for SOMETHING!

Mr. Independent's Halloween

This year was the first year Connor really got into Halloween. And of course we did all the usual stuff, which Mr. Independent had to be a part of but in his own way. Before Adam went out of town, we (finally!) carved our pumpkins from Gallrein Farms. Guess whose is whose!

Mr. Independent is very into knives. Don't ask me why--I promise we aren't violent people. He insists on having a knife at every meal...so we have some kid knives and cheeseball knives that are solely his. But instead of letting him anywhere near the sharp knives this time, we went the marker route.

Next, we went to our Storytime Halloween Party. Elsie (aka SuperGirl, aka Connor's cousin) is in our group as was as cute as always. They had tons of "pupcakes" there, and I tried to feed Mr. Independent his in hopes of preserving the costume. But alas, he would have none of it and insisted on holding it himself to eat. He did get frosting on his giraffe leg, but I think the spots hid it pretty well.

And finally, on Friday night, we went trick-or-treating. Mr. Independent was adamant the he ring each doorbell himself, and also that he needed to choose a piece of candy from the bowl instead of waiting for it to be placed in his "pumptin." (He got away with it because he is little and cute, but we're going to work on that for next year.) And when all was said and done, his favorite thing was not the tasty chocolate or yummy candies he got--nope, he just wanted to go home and eat the peanut butter crackers.

Mrs. Palin

http://www.youtube.com/watch?v=XR9V_aOCga0

No matter who you're voting for, this is hillarious.

The Lab

Today I decided to brave the Kosair Children's Hospital lab once again...and on my own with Connor for the first time. I am trying really hard to make all this stuff we have to do for his SMA a part of our normal life, and I finally decided I was strong enough to do this...and I was (!) despite us having trouble there once again. I don't even know how many times we've been there, but our most recent experience before today hadn't been the greatest...we had to do blood and urine labs (urine from a barely 2 year-old...that was fun) as well as an X-ray, and for some reason the lab couldn' t read the doctor's orders for the bloodwork (I could...and I don't work in a lab everyday...hmmmm), so we were told to get a new order and drive all the way back there again another day. So, today I decided to venture out and give it a shot. This is Connor in his carseat--he was so happy I decided to take a picture...but little did he know the fate that awaited him. We ended up staying in the lab waiting room for a little over 2 hours, while the lab people tried to get ahold of our neurologist and see if she really wanted him to have the same labs done as he had in February. (Hello--my son has a progressive disease so things are going to change. But no one listens to me. I'm just the mom.) They had a big "No Food or Drink" sign posted, but after two hours I just gave up and decided if they were going to kick me out for giving my child a cracker when it was an hour and a half past lunch then they could go ahead and do it because we were ready to go. Finally, we got to go back and have the blood draw and finger stick, and my sweet boy didn't even cry a tear...probably because he was staring the whole time at the big jar of suckers he was going to have two of when we were through. I just pray the results actually get back to the doctor in Cincinnati.

Then I got home and saw this picture I had forgotten about, and laughed out loud, and my whole day changed for the better. Adam has been out of town at his grandmother's memorial, and it will be good to have him home.