Friday, January 6, 2012

Mean Mommy

You know what gets me giddy with excitement these days? It's not Louboutin heels, large diamonds, or even a fancy date night. I think I coveted those things in my old life. Not any more.

Today one of Maggie's doctors gave me his email address and I seriously felt like the happiest girl in the world for having such access to one of her doctors. And tonight Justin and I are celebrating our ninth anniversary by going to a movie. I'm looking forward to watching previews and sipping on a super large diet coke. [Note:It's okay if you think I am totally pathetic.]

I didn't intend for this to happen because I certainly like the finer things in life (and Justin if you read this: one day when things are going better for us I would happily accept diamonds of any sort). But I guess you can only go so long having a child with medical problems before your heart stops being wooed by material things. And I've definitely hit that point. And, I have to say, it's really freeing.

* * *

On another note, I have resorted to manipulating my poor child to hold her head straight. I threaten to turn the TV off or refuse to flip a page in a book unless she tries. Unfortunately, Maggie is too smart for me. I paused the Snoopy DVD with the remote control and told her "I wasn't turning it back on until she held her head straight." Without skipping a beat, she looked at me and then stomped over to the DVD player and pressed the play button. How in the world does she know how to do that???

The reason I'm giving my child a horrible complex - that she'll surely have to go to therapy for as an adult - is because Maggie is probably getting a "halo"in a few months. A halo is a metal ring that is screwed into the skull in 6 places and cannot be taken off. It's often used when someone breaks their back or neck during a car accident; it' not normal treatment for torticollis, but this is not normal torticollis. And if the halo doesn't work, they the next step is a spinal fusion. Both awful and both mean in a two year old. And I'm trying to avoid both at all costs by being, well, kind of mean.

It's so incredibly frustrating because she can hold her head up for a few seconds, so we know she physically able to do it. But we can't wait much longer to see if she'll start doing it permanently because her tilted position is causing permanent damage to her spine and that will only get worse with time. So we have to act sooner rather than later.

It's heartbreaking and maddening. I wish she was 7 years old and she would understand that if she doesn't hold her head up she will have screws drilled into her head and have to wear hot furry vest that can never be taken off. She will have to relearn to walk (if she even can - a halo weighs 6 pounds!) and it will be miserable. And bonus: there is no guarantee that it will work. Most likely it won't, but Justin and I feel like we need to try it before we agree to do the most permanent and final option, which is a spinal fusion in which she will probably have to wear another halo for several months. This is a major and painful surgery associated with high risks. With it she will never again be able to turn her head left or right, although it will be straight. She won't get made fun of in middle school for that....

We would truly appreciate prayers for miraculous healing (once again!)in the next few months. That she will hold her head up and we can avoid all these major procedures.

1 comment:

  1. Happy Anniversary, I hope you guys enjoy the movie! Maggie is going to read these posts, Lee, and recognize the amazing job you have done being her mom and her advocate for the past two years.