Surprise, surprise! My mommy and daddy are still trying to figure out what to do about my treatment. My daddy has been so busy at work, but he still takes time out of his busy day to call all kinds of doctors to try and figure out the best treatment plan for me. He's called all over the country: Baltimore to Omaha (wherever those places are!), and what he found out is that all of these different hospitals aren't even really talking to one another about this kind of treatment. Now, isn't that a silly thing to be doing? Hmmm, my mommy and daddy were confused about it too, but I'm used to the confusion by now.....
It seems that my mommy and daddy need to learn all they can about this because every doctor has a different treatment plan, and it doesn't seem like any of them are sharing their findings with one another.
There is a special doctor in Baltimore who wants to do more about this though. He is calling around all of the other doctors to see how they do their treatment. I hope he helps everyone try to find one way of doing this because it is frustrating for people who are just trying to help their kids. My mommy and daddy aren't doctors, but they really have learned a lot and have to know as much or more than the doctors do. My mommy is also talking to some nice moms from this Yahoo! OI group she joined. She posted a question about treatment and two nice ladies wrote back about their stories. This makes my mama feel better because it's nice to talk to people who are going through the same things as us. They gave her good advice about gettin' schooled in all things OI because we have to be our best advocates.
I Found My Feet!:
Now let's get down to the most important topic...my feet!
The other day I was just hangin' out, like I usually do, looking for something to grab and stick in my mouth when, Eureka! I had found something interesting. I pulled and tugged, but it wouldn't come close enough to my mouth. My mom got all excited and up in my face, smiling her toothy grin and acting all happy, saying something about something (that's how it usually goes). I didn't really pay any attention to her until later on, when I did it again. I looked down and, holy Toledo! The thing I was grabbing was my own foot! You know, I have been trying for about two or three days now to get that tootsie in my mouth. It's close, but no success just yet. You'll be the first to know when I get it...well, after my mama and daddy, of course.
My mommy says she often puts her foot in her mouth too,
but I've never seen her do it. She confuses me sometimes!
JAMES BROWN!
Yesterday I sure was a crab-a-saurus, that's what my mama calls me when I get crabby as all get-out. I know, you didn't think it was possible that I could do anything but smile and be prefect, right? But I'm learning real quick how to do this thing called crying when I want something RIGHT NOW! And it seems to work real good.
Anyway, since I decided to stay awake as much as possible yesterday and I slept for oh, about 40 minutes all day long, I wanted to give my mom a break today so I slept and slept. When I woke up though the miracle that is James Brown and The Beach Boys was before me. My Papa always gives me music lessons each day that I see him, and I'm not talking about Elmo or lullabies (although I secretly love those too). I'm talking about The Beatles and the like. True musicians! I was dancing and singing today. My mom even took time out of working to come in to watch me go at it, although by that time I was a bit worn out. When I dance I throw my hands out and make my chair rock back and forth and I scream and make sounds. Everyone thinks it's quite a sight. I hope you can see me in action one day!
Jess,
ReplyDeleteEvery time I read your posts, i can hear your voice saying all these things !! I miss you friend !! and you crack me up with your stories about Maggie !:)
-Paola-