Tuesday, July 27, 2010

The Tingle to Teach...

Yesterday, Roa and I had a nice visit from his Aunt Chrissy and Cousins Jay, Jon, and Bret.  It was great for Roa to get to hang out with these big boys and watch them in action!  He was unbelievable quiet and wide eyed, taking it all in!  Too cute!
Bret, the oldest of the group at 8 years, is great with Roa.  He plays with him and talks with him.  So nice.  The boys brought their bikes and rode up and down our street with Roa giggling behind in his gait trainer.
He was exhausted when they left, but of course didn't nap- just vegged out to a little Winnie the Pooh.

It was nice for me to have a little time with Aunt Chrissy for some get to know you talk.  We only get to see each other at holidays or special occasions with the whole clan, so it was nice to have some one on one chat time. 

During their visit, I really got that ache to teach again.  I had planned to do daycare in our home after resigning from my teaching job, but with all Roa's needs, it just never happened.  I thought maybe I would start out this coming fall with a couple children around Roa's age, but now we are blessed with a baby on the way at Thanksgiving. 
Yesterday, watching the boys play in my "classroom" in our basement.  The ol teacher feeling came back.  I know I teach my Roa everyday, but the biggest part of my job in Early Childhood Special Needs was to teach parents how to best meet the goals of their children.  I also taught workshops on play and brain development to parents of typical toddlers in our community.  Chatting with Chrissy and sharing homemade playdough recipes, locations of where to find cool learning toys, etc.  made me want that connection with other parents again.
 It honestly has been difficult at times, not jumping in with advice at family events, at church, our doctor's appointments, or while grocery shopping about parenting skills and child development. It has always been my passion since first babysitting at 12 years of age.  Now that I am a mother, I feel I know even more and could really share!
But at the present time, I don't get paid to give my advice like during my 12 year teaching gig.  Giving out advice freely is considered pushy, rude, and judgemental.
So,  if you ever have a question on development, behavioral issues, feeding, literacy, communication skills, potty training, discipline.......  I'm first in line with an ear and a helpful opinion!  :)

Wednesday, July 21, 2010

And the Little One said, "ROLL OVER!"

We have purchased a new computer and cannot wait for it to arrive!  Such issues we have with speed and bugs- time for an updated model.  Once that computer arrives,  I PROMISE to post a few new pictures and videos of our Rojo!  I also want to get back into my regular posting of Roa's day to day journey.

Roa is on the verge of rolling over to his tummy.  Side to side he goes and almost makes it with the lower half of his body, but gets caught up with his darn arms.  So frustrating for him and us.  Neue, ABM practioner and Kim, Cranio, worked so hard at yesterday's session to decrease his frustration.  We were ALL sweaty and over-worked by the end. 
I can't even describe to you how much I ACHE to have Roa move with some independence on the floor.  I love him so much and his constant struggle to gain control over his body is heartbreaking to a mother.  I watch other children move and think about the ease of their movements versus the daily battle with sweat and tears that my Roa undergoes.
 What we face in life only makes us stronger.  I know..., however, I pray each day for even a minor victory on that blasted floor!!

The gait trainer is another story.  He is running down our street each morning for our daily walk.  Giddy he is as we move along talking about the birds, squirrels, flowers we see along the way.  Today, our neighbor, Don, joined us for the last stretch and Roa acted so proud, walking along with Don!  Our neighbors are so sweet and take such interest in Roa's development.

Roa had his 2 year doctor appointment and all was well.  He hasn't gained much for weight, at 24 lbs now, he actually is down a pound since his last visit.  Dr. Colwell is not concerned, however, due to his 2 inch height increase and his very active lifestyle!   I get out of breath just thinking about all our "on the go" time!
Last week, Momma pushed it a bit too hard working with Roa with the increased size of my growing womb and my back went out.  God bless Doctor John, our chiropractor!  After a few days rest and a great adjustment, I was back at it.  Bryan has given me strict orders to take it a bit more easy each day.  Difficult for this over-achiever mom, but I am trying.

Thursday, July 15, 2010

Someone to Watch Over Me

When Roa was tiny and in the bassinet along our bed side, he used to look up and gaze with a smile on his little face at the crucifix hanging on our bedroom wall.  Roa was a cranky baby, but during those moments, he looked so peaceful.  Bryan said it freaked him out a bit.  I, on the other hand, thought that maybe Jesus was speaking to our boy- helping him through his difficulty time with reflux and muscle cramps.

We've moved our bedroom around in preparation for the new baby's nursery and to make some room for the return of the bassinet. Maybe this new arrangement brought Roa's attention again to that cross for when lying on our bed with me today, once again, Roa gazed over at that cross and smiled knowingly.  It warmed my heart.
Wouldn't it be great to know what he is thinking?  Or hearing from our Lord?
Miracles can happen.... we are patiently waiting for Roa's.

Friday, July 9, 2010

Update on King Roa

Computer issues.... it has been awhile since I wrote.  I missed my blogging therapy!!

There is not a whole lot new in the world for Rojo.  No miracles, no amazing milestones met.  But, our boy keeps working hard at walking in that gait trainer and going through his therapy routine at home with Mama.  We have had a short break in our therapy schedule due to the Birth to 2 staff summer vacations, and... I have to say it has been very nice.  Less people to answer to, less people to clean my house for! ;) 
We picked up a few more sessions at Courage Center with Andrea, PT and continue with our Conductive Ed and ABM/Craniosacral routine.  Bryan even gets Roa in the HBOT chamber 2-3 times a week.

Little things are happening for Roa that we are happy about.  1) He is liking a "roll over" game that we started with him last weekend.  Rolling over across the floor is much more exciting when Daddy, Elmo, and his puppy stuffed toy roll too! 
2) He is moving and shaking in the gait trainer!  He has taken a liking to walking down the driveway and out on to the street with Momma and continues for almost a block.... laughing and walking!  So awesome.
3) He is babbling more and has said, "Kitty", "Mow"(mowing the lawn with Daddy, his favorite task).  We think the HBOT really has alot to do with the increased vocalizations.
4) He is sleeping better!!!!!!!!!  Still wakes once in the night, and gets up at the crack of dawn for the day around 5:00am, but overall seems more comfortable at night.   Sad to say, we think it is the break from Birth to 2 therapy that has made this change.  Time to chat with the Laurie and Mary...

Roa has a great 4th of July with Bryan's side of the family in Grand Rapids, MN.  It was really nice to see him interacting with his active boy cousins and watch them play ball and run.  He wanted to get right out there with them!!  They did a nice job of including him and playing with him. 
It also was great that Bryan's family got to see Roa in his true form.  Giggly, on the go,.... typical 2 year old except for his motor delays.  We got many comments on how happy he is and how his temperment has changed.    It is hard for some people to get past the gait trainer, AFOs, etc and see that there is a little boy ready to play and explore in there!  He just needs some help getting to the toys or moving from spot to sopt.  This past weekend opened some eyes, we hope,  maybe erased some negative preceptions of Cerebral Palsy and subsided some fears. 

My belly is getting much bigger!  20 weeks now and life with Roa is getting a bit more difficult.  Thank goodness he likes moving in the gait trainer so much!  Momma can not bend over like I used to.  We are currently shopping for a Big Boy Bed for Roa and want to start that transition well before Baby T2 arrives.  We are also shopping around for a fish tank for the boy's bedside.  We hope that might make the jump to a regular bed go a bit smoother.  Our guy loves fish!

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

Say CHEESE!

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!


 

Mom and Me

Mom and Me