Tuesday, June 29, 2010

Party Thank You!

Roa's party went well.  Bryan and I, of course, felt like we were running with our heads cut off, but Roa seemed to enjoy the company of family, the birthday cupcake, and especially the pool time fun with loved ones!
I wanted to give a big thanks to the family that made the journey and took time from your busy summer schedules to partake in the festivities for Little Roa.  It meant alot to the Thayer's to have support of family.  THANK YOU!

Wednesday, June 23, 2010


The Thayer's had family photos taken on Saturday.  Roa also got his individual 2 year shots.  Picture time has never been fun with Rojo.  We tried the cheap route, visiting Sears and JC Penney's but were not happy with the results.  Actually, with JCP, I contacted the manager and complained.
 Every appointment I make, I call ahead and let them know that Roa has CP.  I explain that he doesn't sit on his own and will need positioning aids, a quick camera to catch him when he is able to hold a position independentlly for a minute, and an experienced photographer with alot of patience!
The last visit to JCP was when Roa was turning 1.  The first red flag that this wasn't the dream session we would have liked was the fact that the photographer who checked us in said, "Oh, he has cerebral palsy."  Can I look at him first?"
What was she expecting to see? A scary monster in our stroller?
When she came over and met Rojo, she said with surprise, "OH, he is Cute?!"
Again,...scary monster expectations??
The photographer taking the photos was nervous and very hurried.  I think we got one good shot and he wasn't even smiling, just looking towards the camera.

I know it is not easy snapping shots of Roa.  Trying to catch the moment while positioning and distracting is difficult.  That terrible session made me research Special Needs Photography online.  Guess what?  No where to be found. What a great business venture THAT would be!! 

Throwing it out there into the universe.......

Amber from A la Flutter photography is now our official family photographer and she is GREAT!  So kind and patient, giving King Roa the time and attention he deserves.  Check her work out at: http://alaflutter.blogspot.com/

What are you other Special parent's experiences with photographers?  I'd love to hear!

Friday, June 18, 2010

Happy Father's Day!

A Different Kind of Daddy
by J. Thayer

Some dads are only fathers.

A buddy on which to call,

To tie an occasional shoe

Or toss around a ball.

It takes a different kind of Daddy

To be a Dad to me.

You’re there for me in many ways,

Most dads could never be.

You help me see the world

In ways my body won’t allow.

To help me walk across the lawn,

You gladly take a bow.

You hold me up to touch a tree,

I help you cut the grass.

You gently position my little hands

As I drink from your big glass.

You always know to play peek-a-boo

While I’m waiting in my chair.

At bedtime you carefully arrange

My blanket and my bear.

What other dads take for granted,

You patiently wait to see.

You never push or expect too much

But always encourage me.

You’re a different kind of Daddy,

As you can clearly see.

You are my feet. You are my voice.

You mean the world to me!

Happy Father’s Day!


Friday, June 11, 2010

Birthday Wishes

Roa's big birthday is coming up on June 24th.  I can't believe our little guy will be two!!  Actually, by the amount and temperature of his latest tantrums and meltdowns, I guess I can tell we are hitting that dreaded second year!

We are having a small family pool time at the Courage Center in honor of his special day.  I am excited for our family to see where Roa spends part of his therapy time in a place he loves so much.  We are hoping that maybe our families will feel a bit more comfortable with asking questions about cerebral palsy, therapies and Roa's life after taking a "step in our world" for a couple hours.

I am not a birthday party for tots kind of person.  I think that parties at such a young age are only for the benefit of the parents and extended family and that kids usually just get overstimulated, cranky and off -schedule.  When kids are older and have little friends, birthdays actual mean so much more to them. 
So, Bryan and I thought this pool idea would go right with Roa's routine, only he will be swimming with familiar faces! :)

We have had a few people ask about present ideas for Roa.  PLEASE, everyone, do not feel that you have to buy him anything.  Many of you have donated to his Hyperbarics, Conductive Ed., and other therapies and equipment, and we appreciate your thoughtfulness.  The gift of a monetary donation towards Roa's future progress is a HUGE gift that goes on giving for the Thayer's for years to come.

As the toy and book collector that I am, I have already bought a few presents for Roa's big day.
If  you want to give him a small gift to unwrap, small pool or bath tub toys, fidgety toys like koosh balls, wind-up toys, etc are GREAT for therapy times!  Roa also loves balls of ANY style size or kind. Toys that are entertaining and easy to activate- like remote control cars, etc are great as well.

Once again, thanks for all the support in the first two years of Rojos life.  Remember that the gift of a friendly ear to hear about his progress, an interested voice asking questions about our life, or a visit with The King himself is the greatest gift you can give.

Wednesday, June 9, 2010

Craniosacral and ABM Team

Roa had a therapy session yesterday that was pretty exciting!
 I asked if Kim, Craniosacral, and Neue, Anat Baniel Method, could work together with Roa as I really feel that they could compliment each other.  Yesterday was the first official combined therapy time and it went great!!
Roa was on the floor on his back and with some gentle guidance, rolled to his tummy and righted his arms independently to push up on his forearms.  He did this WITHOUT complaint!! It was wonderful!  

During the session he also bent his arms independently (usually they are straight out when attempting motor tasks) and he moved up onto his knees while on his tummy.   All such little things, but to us THEY MEAN THE WORLD!
Roa had many "in the zone" moments while Kim and Neue worked.  It was exciting to see the joy in his face and a sense of accomplishment. 

That night, Roa was a sommersaulting maniac (I DEFINITELY have to get that on video and post for you to see) and he also was kicking at toys while sitting in his rocker... WITH purpose...and alot of laughter! 

Some great brain connection were made yesterday.  Let's hope this progress continues!

Tuesday, June 8, 2010

King Roa Demands

Got a new stander to try out for the summer delivered today.  It is a "Sit to Stand" and Roa has been in it a couple times while at school and doesn't seem to mind being in it.  Standers are used with children diagnosed with CP to help them bear weight and work on hip alignment.  It is not always a fun choice of activity, especially for a kid like Roa who likes to go go go!  But, we battle through it.

Stander time was thought to give me some relief from "Roa entertaining".  Put him in the stander and you can clean or cook while he plays, the therapists say.   Yeah, Right!  Not with our boy.  King Roa is possibly the most impatient, demanding child ever!  I can not leave the room without an outburst from the King.  Stander time is "Momma, sit right beside me and juggle time".

People say, let him cry and he will learn.  Tell him you will be right back.  Give him something to entertain him while you are gone. 
I have tried it all and then some..... King Roa still cries, yells and demands.  It is just who he is.  Drives me INSANE at times, but it is life with Roa.

So, we work diligently at helping him increase the control of his hands and work on positioning in standers, chairs and floor.  We look for toys he can easily activiate that also cognitively challenge him.  Roa's brightness is a curse at times.  His brain know what it wants to do and learn and explore.  His little body holds him back.

So, Momma keeps juggling to keep the King happy.  Housework and even bathroom time sometimes has to wait when King Roa demands.

Friday, June 4, 2010

CP Dreamin'

Once upon a time, there was a land, a beautiful land called Cerebral Palsy. 

And in that great land, there was a place to take your child diagnosed with CP.  A place where they would read the crystal ball and say, "Here are the therapies that will help,  Here are the ones to skip." 

"Want to give that bright little mind a chance to communicate on his own?  We got the perfect oral motor activities to get him talking!  Think he needs a communication board.  Let us find the perfect one that doesn't take a lot of coordination to reach or strength to activate!"

This wonderful place also has a center where they actually WATCH your child move and play.  They, then say, "Here is the walker we will build for him- custom-made to support him in areas he needs it but allows him to move in his own unique way."

The sleep specialists come to your house and actually attempt to help you through the wee hours of morning crying sessions.  They devise a plan and help you implement the perfect mix of natural supplements, massage, and postioning aids.

The helpful staff at CP land also looks at your everyday, life needs and says,  "Here is a bath seat to make bathing easier." 
 "Have trouble with a restaurant highchair?  Here you go!  Voila!  A perfect insert!"
"Want to take the little guy grocery shopping, but have trouble managing him and the cart?  Just put this gadget in the cart and he is fully supported!"

And the most BEAUTIFUL part of CP land is that these wonderful aids that make life easier for the family with cerebral palsy (because we ALL live it, not just the child)  DO NOT cost an arm and a leg or require a prescription from a doctor in order for insurance to cover. 

You are free, as a family, to LIVE life just like everyone else.... having fun with your child, celebrating milestones, and dreaming big dreams of bright futures... just like everyone else.

Oh, what a wonderful dream.

Mom and Me

Mom and Me