Choices

I probably shouldn't be blogging today.  I'm having one of those days were the negative thoughts are outweighing the positive.  Beware as you read.  If you chose to judge me for my message, that is your choice.

Yesterday, I had the glucose testing doctor's appointment where you drink the sugary drink and wait an hour.  Bloodwork was done along with a doctor visit and all is well.
Trouble in my mind occurred during the hour wait time. 

I love to read and was actually looking forward to this hour of just simply sitting and reading.  I brought with me my Parents magazine, my latest novel for fun, and my Teaching Motor Skills to Children with Cerebral Palsy and Other Movement Disorders book.  Being in the "let me learn" mode, I chose the therapy reading.

I have had this book for months and reference to it for ideas and facts about CP, but this day, I started from the beginning and read all the chapters that apply to where Roa is right now.  It was hard reading.  Scary thinking of the "your child may NOT"... phrases that occur.  Scary to see the pictures of babies working on skills that Roa has a difficult time mastering such as complete head control, remaining on his tummy while at play and actually using his arms and hands while being on his tummy, finally working through that ATNR reflexive pattern that stops him from bring his hands to midline together to play.
This book is great and very informative,...don't get me wrong.  But, along with reading it comes the internal drive to FIX these defects in my boy.  The drive to follow through with all the listed exercises in the book to strengthen muscles and inhibit negative reflexes. 
So this morning, I did my best to go through the "work out".  I may have limited abilities myself to bend at the waist and lift and turn with my pregnant belly, but as God as my witness,... Roa was going to complete the routine (at least two times a day, the book suggests)!!
Problem is, my Roa doesn't smile and giggle through the "Happy Baby" exercises like the toddlers pictured in the book.  Roa yells, complains, and fusses.  He arches and tightens and resists.  Two exercises into the routine and we both were sweaty, mad and in tears.

That has been life with King Roa since day one.  Cute, smiley and babbling away when left to lay on his back and kick at the ground and swing his beads or grab at a balloon string. Of course, with the unfaltering attention of the caregiver at hand. Happy to be positioned in to his "comfort zone" positions and be entertained by you, but the minute we turn to "work",... it gets down right ugly.  And as his mommy, I break down and stop the work. 
I don't want to be that person.  I don't want to have my baby boy cry and look at me with those sad eyes and pouty lip.  It breaks my heart to have him cry and fuss with the therapists, but at least he can come back to Mom for comfort.  I don't want to be the "bad guy".  Call me a whimpy parent.  Call me soft.  But if you have never had to deal exercises for your baby, workouts that you MUST perform according to doctors and therapists, while your child fusses, struggles and cries,... can you really judge?

Lite Gait training for Rojo

We attempted a new therapy technique at Courage Center with Roa that gives us great hope for proper training of Roa's gait for independent walking.  Roa is young for this kind of technique, but handled it like a champ yesterday with Andrea!  We were VERY happy and excited.
Check out this video attached.

http://www.youtube.com/watch?v=wqG2iPePy28&feature=related

Roa's photo session

Check out Roa on Amber's blog:

http://alaflutter.blogspot.com/

Conductive Education Family

On Saturday, we had a fund raising family gathering for Roa's conductive education at the Plus Center.  Since Roa has one on one sessions with Ors and his Auntie Ellen drives him to the sessions now, I have never had the pleasure of meeting the other CE families.  Boy, was it a joy to finally get a chance to chat and compare notes with others!
Roa is one of the youngest children attending the center, so I got a chance to hear the stories of other children older than Roa. Each parent I chatted with had nothing but great things to say of Ors and his Conductive Education program.  Some of the children have been coming to CE for 10-12 years!  Peter, age 5, first walked on his own at the center when he was 4 and has walked on his own ever since.  His mother said they owe it to conductive ed!
It was a wonderful experience for the Thayers. It made us feel part of a group, part of a family of hopeful parents.  It gave us promise of bright things to come.  We really needed that!  Now, we ponder how we will get Roa to attend more sessions of conductive ed.  It is a distance and with the new baby on the way...but "where there is a will, there is a way".

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 Gillette...it 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?