Wednesday, August 4, 2010

Rate Your Fears and Dreams... on a Scale of 1-5.

I  opened Doctor Gormley's follow-up report from Roa's last visit to was a bit hard to read.

 Overall, a good report that states some very positive things about our boys progress, describing Roa as alert, pleasant, and cooperative.  It speaks of his achievement with his gait trainer and frustrations with floor play and movement limations.

The report is similar to ones in the past, however, this time the doctor used the dreaded Gross Motor Functional Classification System. This rating scale is used by doctors and therapists to give a general projection of future motor skill development of kids with cerebral palsy including independent movement and adaptations with assistive tech.  It is a scale of 1 to 5.  1 being the least severe impairment.  5 being high limitations on independent mobility.
 I've known of this scale and have been happy that we haven't yet had to face an actual rating for Roa from anyone based upon it.  I don't want that kind of crystal ball prediction.  I don't want that kind pressure for the future of doctoring and therapies.
Well, this report gave us the number.  The grade. The dreaded digit.  Roa is a GMFCS IV.  Not the most severe, but the next step to it.  My heart skips a beat and my eyes well as I type it.

Really?  My bright, giggly toddler who cruises down our street in his gait trainer with happy confidence?  My little jokester who has taken to spitting out his food, sticking out his tongue, and laughing at our reaction?  A level 4?

At level 4, this scale predicts some independent floor movement in the form of rolling or various degrees of crawling between the ages of 2 and 4.  It predicts assisted sitting into 6 to 10 years of age.  It predicts the use of a power chair for mobility throughout the age ranges, with some use of a walker for shorter distances and flat ground somewhere around 6 to 10 years.

The scale guidelines warn parents that the predictions are general as development is different for every child.  Each child makes different accomplishments at various ages dependent on abilities and therapuetic support.  For example, Roa shouldn't be moving in a gait trainer at his age according to the scale.

However, it is still there.  Haunting my every thought.  Bringing tears of fear to my eyes as I ponder, What's next? What else can I do from my precious boy who wants to get up and go so bad?

This simple number given to us, makes me flash back to that fateful day, when I was pregnant with Roa and trapped in that mangled car. It was the scariest, most life altering day of my life.  I can't believe how it has altered his life as well.   It was truly a miracle that we both survived and I feel blessed to be alive each day.  But, why does my boy have to pay for my pregnancy difficulties?  Why is he simply put on a Scale from 1-5 that now is a constant reminder of my worst nightmare re-lived?

1 comment:

  1. It's just a number....that is all. There is only "ONE" who knows where Roa will go and what great accomplishments he will have. Day by day, keep on the path!!!


    E, B, M & A


Mom and Me

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